Thank you for carrying and holding so tenderly and safely this vision (and reality!) of compassionate care for so many years — from your own experience with your loving grandmother during your own extreme process of “coming to be in this world” through supporting others in this process through I-Ward, through 30+ years of trying to infuse this support within the institutionalized walls of public mental health care…
I would suggest that Dick Price’s vision (and those his vision has and continues to attract) has more than lived on, it is growing. As all those who gather here continue to demonstrate.
Grateful to be reminded of this important work and its potential.
And thank you, always, for including families in your work and vision… We need healing and can be healers too. You are deeply appreciated Papa Bear!
“Can … we claim that our society can and must also be a constant source of an opposite kind of ceremony that we pursue doing status elevation ceremonies, identity valuation ceremonies?”
Michael, this is a wonderful question! I would love to see what that could/would look like! We do have institutions like marriage (now more open in many states), promotions, rights of passage like graduation ceremonies, but I’m curious what a “coming through the dark night of the soul” identity valuation ceremony might look like?
And, since that can be a constantly evolving process, when where and how do we celebrate it?
Thank you for inspiring me to think about a new kind of ceremony. I love Goffman and take seriously the impact of labeling, but love the invitation to co-opt labeling for good!
Faith, thank you for sharing this beautiful blog about some very ugly challenges we face as a community. I also appreciate your thoughts on how we can befriend ourselves. That is so important as there are many times when that is all we have, if only in the moment. Practicing this is so vital, because life can be so fragile, as the loss of your community member shows. That moment can hold great import if we don’t show up for ourselves.
I have found that mindfulness exercise of “what would a friend say/do” to be so helpful. Often, it is something very simple. Like “love yourself more.” Take a bath. Have a cup of tea. Lay in the sunshine. Friends can indeed be ephemeral and shapeshifting, showing up in our moments of need if we can pause long enough to recognize them.
You have been one of those friends, many times, for me and, I’m sure for the person who is no longer with us. I hope you can take comfort in knowing that.
mjk, just wanted to reach out an acknowledge your pain and the tremendous amount of strength and courage you are having to draw on in these moments. Your life does matter. I have appreciated all your insights on so many blogs.
I will say a metta prayer for you that you find freedom from suffering in life-giving ways if possible. We all deserve freedom from suffering, and friends to help us hold our suffering when we are having a hard time bearing it. I hope you can find both. You are worthy of love and support.
Dr. Nasrallah’s editorial and your blog seem oddly prescient given the recent NY Times article on involuntary outpatient treatment which enables the government to mandate ongoing medication with these “neurotoxic” medications.
Oddly prescient because the NY Times didn’t mention Dr. Nasrallah’s editorial at all.
Institutional efficiency aside, I do want to recognize the many caring professionals, like you Michael and many bloggers here on MIA, who have always led with their heart regardless of the systems they have found themselves in. The human spirit is hard to crush. Thank goodness!
Thank you for reminding us there are many humane, loving and respectful ways to support someone experiencing extreme distress. Ways that preserve human rights and dignity and safety for self and community.
Unfortunately these approaches take time and heart, which is perhaps why we find them seldom used in institutional approaches. Not terribly efficient in the short run. I suspect much more cost effective (and I do mean cost in every sense of the word) in the long run. Hard to measure in the aggregate, must be measured one person and one moment at a time.
It is also notable that the UN Study on Human Rights was not mentioned in the article. This issue is much more nuanced and controversial than the article would lead us to believe…
Thank you for sharing your insights and your sources of inspiration and understanding. I always appreciate your family systems “lens” whenever the causes of emotional distress are explored on this MIA blog forum.
What really strikes me is your emphasis on the necessity of movement to create spaces for healing. It is certainly necessary for individuation this movement from family of origin to family of choice or creation. No doubt that even the healthiest of families may have a hard time letting go to let grow – all the more so when someone is perceived as “too vulnerable” (which is certainly subjective).
I think, if we acknowledge that suffering is experienced in relationships, we have to make room for (and even encourage) safe movement away for healing. And that may not lead to movement back or re-establishing relationships within our families of origin. And maybe it can lead back sometimes too.
But where that path leads, away or to, should be led by the healer (the self-healer), don’t you think?
Another thing your reply reminds me of is how we tend to “water the seeds of suffering” from one generation to the next. I’m mixing Buddhist and Native American metaphors here, but I love the idea that we can break this chain of suffering for many generations, moving both forward and backward in time, through our own healing. That alone. By attending to ourselves with infinite compassion and making different choices than the patterns handed down to us. And that may lead us to join a diverse healing community or it may not. I think that’s okay. And, in the end, it doesn’t matter what I think anyway!
Thank you for sharing, David. I always take away something new from your words…
I want to thank you for continuing to bring evidence to the table for us to consider what really supports healing from extreme distress. I hope this new data and mounting evidence base do transform standards of care (for those who can access that care, another big issue) that improve mental health outcomes.
I also want to thank all of those on this site and elsewhere who continue to put “anecdotal” real-life evidence on the table for us to consider. There are an almost infinite number of ways to heal from distress, trauma, abuse, illness, grief… the vicissitudes life seems to throw us all in some measure.
I appreciate Maria’s injunction to consider that Soteria and Open Dialogue may not be gold standard either if we don’t take the time to consider each person’s unique circumstance. To listen for what may be needed. To look under a variety of stones, and not all of them in the mental health garden.
As always, something magical happens on this forum when so many perspectives are given voice.
Thank you all for stretching my limits of understanding in the service of healing.
Thank you for sharing Duane. I have really learned a lot from this vigorous exchange and appreciate everyone’s honesty and courage.
Kathy, I appreciate your willingness to question long-held beliefs and what sounds like your willingness to support your son in taking the lead in his recovery choices. As a fellow mom, I know that can be scary territory.
Good luck to you both in your family recovery journey!
Alex, thank you for sharing your film and a bit more about your healing journey.
I think we often forget that healing can come from so many places. And being or feeling like a career patient can really get in the way of healing and personal empowerment. Aligning with our heart and purpose, speaking our truth, standing in our power, finding and sharing our gifts, trusting our emotional guidance system, learning to set healthy boundaries… these are the qualities of a life well lived, aren’t they?
We are moving way beyond the concept of mental health recovery to real transformation and being-ness. Another reason it is so important to move beyond labels, we are all so much bigger than any of them!
Thank you again for expanding the dialogue and sharing from your Self.
Your story is heartbreaking. I wish it were more uncommon. The fabric of our families is so easily torn when any thread begins to unravel. We are all so interconnected, aren’t we? Recovery (or healing or individuating or… whatever word comes closest) can be challenging enough when we are looking at just ourselves. When we look at the whole family, it can unfold so differently for each family member. The problem is, as you point out, there aren’t enough people looking at and supporting the whole family. Or even including them when it might be helpful.
In our class, we have a recovery mapping exercise that is designed to show how everyone in a family moves at their own pace, sometimes in different directions, and with different (and many of the same) needs.
You are so wise to recognize that together or apart, everyone has to work on their own healing. I hope your family continues to move from half-ways to whole ways healing.
It sounds like you have been courageous and strong. I hope you are giving yourself as much compassion and care as you can. Do you and your family have any supports outside the mental health system?
Alex, I have been cutting and pasting your comments to respond to and realized it’s pretty futile. I would need to simply repost your post in its entirety. You have captured so beautifully our hope and understanding of how suffering can be shared in families and how it can be healed in family communities.
I want to carefully acknowledge the existence of both blatant and insidious abuse in families and also the unhelpful perpetuation of suffering that cannot be traced so easily. As family members, we hand it down, unwittingly, from generation to generation along with all of the love and other gifts of our ancestors. I think most families fall into the latter category (well, perhaps all do, and the gross abuses represent one end of a very broad spectrum).
I can’t resist quoting a few of your words below as they are still reverberating in my heart.
I believe that once we heal ourselves from the negatively skewed self-images that family abuse ignites within us, then our roles in the family shift from family victim to family healer/teacher.
It took a lot of patience on my part–with which I didn’t always connect, but to which I always eventually came back–and knowing when to engage and when to allow them space for their own process. But over the years, I learned how to navigate this with my heart…without sacrificing my own voice and process.
I learned that our individual healing can serve to spiral outward, like a radio signal, if we keep the fire of hope alive, even when it looks a pretty tenuous.
Alex, would you be willing to share your family’s story as a blog on our MotherBearCan.org website? I think it would be deeply healing for families to hear and it is important for us to share this perspective. If this resonates with you, please email me at [email protected] and we can talk more about how you might like to share.
Thank you for sharing more about the Truth and Reconciliation project, from which Justice Circles (here in the US and elsewhere) have also sprung. For any of these approaches to work, there does have to be a willingness for consideration of harm inflicted (intentionally or not) and a willingness to ask for forgiveness. There also has to be a great deal of safety built into the process, most especially for those who have been most harmed. And, I think, some period of time for personal healing to take root before venturing into this vulnerable and potentially re-traumatizing process.
Our online classes and in-person family support groups (currently being piloted) are strictly voluntary. No one is turned away nor coerced to come. So far, intact families who have joined either setting do have open, supportive relationships. In families with parents and children, when harm has come from treatment, and parents have been part of deciding on that treatment, they are painfully aware and grieving that their best efforts and/or trust in providers has led to additional harm. Another layer of trauma and shame.
Our organization is trying hard to offer families alternatives that so many have worked tirelessly to create.
What more often happens currently is that we serve families looking for better ways to support their relatives. And we have a smaller but vital minority of survivors (unrelated) who are able to offer a perspective of what hurts and what helps that is received so gratefully by overwhelmed family members who have been fumbling, often with little or no help, to figure this out.
In this way, perhaps we are functioning a bit like the Family Constellation or other family systems approaches. Instead of chairs or other symbolic representations of family members, we have living, breathing loving human beings who are all trying to find their way to healing.
There is no doubt that this is an ongoing experiment and only works when we all hold the highest regard for each other and our mutual well-being.
Emily, I can’t thank you enough for your presence and participation in our class. You were a constant source of inspiration for me, personally. Given the class discussion, I know I am not alone in this feeling of gratitude. You brought a lot of wisdom to our class.
I also wanted to share how much I resonate with being surprised by what I learned. Even though I’ve worked closely with this curriculum over the past year, I found myself continually marveling at new insights and approaches shared by class participants —family members and survivors alike. This truly is a shared and living journey, and we’ve all got a lot to learn and give.
CatNight, thank you for bringing this intergenerational dynamic into the discussion. How precious it is for your family to have your own experience and choices to learn from but also your respect for their right to make different choices. That is a profoundly healing space you are holding… And in the midst of it all, you ask for support and community for your children who witnessed your messy recovery/life journey (honestly, aren’t they all?)…
Your children would find welcome reception for their personal choices (and understanding yours) and their experiences in our classes and Mother Bear community. We, as a human race, seem to be very good at intergenerational trauma. Rather than a source of blame, I find this a great wellspring of compassion.
I once heard Vietnamese Zen monk Thich Nhat Hanh say that we all “water the seeds of suffering,” just as those who came before us, but that we can also choose to “water the seeds of happiness.” Something about that gave me great compassion for the mistakes made by my family and my own re-watering of these mistakes — but with recognition comes the possibility of making new choices.
It sounds to me like you have made choices that support your healing and that you are offering this same gift of choice to your children. This sounds simple, but as a parent myself, I recognize how courageous and loving this gift is. Thank you for sharing.
A humble and profound echo of gratitude for this MIA community and those who birthed it and who are working tirelessly to keep it going and vital. Bob, Kermit, Matthew—and every other beautiful, impassioned voice on here… Blessings.
David, I would be happy to do so. I will email you with on Monday more details. It is my understanding that NAMI chapters do not have latitude to change their curriculum. It must be presented “as is” and read verbatim (the Facilitator Guide is scripted).
Chrys, I wholeheartedy agree that we should all have the right to define who we are and to reject disempowering, stigmatizing and marginalizing labels. Thank you for stating that clearly.
HI David, they do have a Jani’s Foundation FB page, but if you visit it, I think you’ll find “dialogue” is in very short supply. There is a lot of pain and angry attacks expressed on the site. Very sad situation. As my grandaddy would say, “If I was a praying person, I’d pray on this one!”
Joanna, thank you for your lovely light. Honestly, there is so much wisdom being shared it would be hard not to honor it. It would certainly be a shame not to. A big part of my own healing and growth has been realizing I don’t know it all or even a fraction of it all. I’m grateful for the opportunity to learn from others. Thank you for your gift of appreciation. I’d like to give mine to you as well.
Sarah, with full appreciation for Joanna’s concern below, our hope with our organization and classes is that we do see that day. I’m not sure any of us is immune from trauma, fear, depression, dark nights of the soul, intentional and unintentional abuse.
Which is not to excuse or ignore our moral imperative to correct institutional abuse and neglect, where ever we find it (inside mental health systems or in any realm of human experience).
Healing seems to happen in those places where we share our vulnerabilities as humans.
Joanna, I always appreciate your voice and wouldn’t qualify it as a rant 😉 Jam packed with observations, critical questions and concerns, to be sure!
I hear you about the word “recovery”. Last fall I was honored to be in a discussion with many survivors (I realized I was more of one than I’d thought), and we acknowledged that pretty much any word we could use for crisis, healing, altered states, etc. etc. could be co-opted. Language is a label. It is imperfect. And it can and is misused to create or maintain power differentials. Deconstructionists like Foulcault, Derrida and others make these points very well.
Not surprisingly, after a week of looking at this, we weren’t able to come up with any good solutions or alternatives. Other than some kind of Nike “just do/be it” (whatever that is) in the moment. Just show up. For life.
But we seem pretty attached to our labels (whether we think they are helpful or harmful).
Another point you raise, which is incredibly important, I believe, is that the “recovery (success) story” can be a real trap and cause additional suffering.
Life is messy, nonlinear, hellish, joyous, maddening, sane, profound, meaningless. And that can all be before lunchtime! We say “that’s life” when we talk about those who don’t have psychiatric labels. We say, “that’s relapse!” when we talk about those who have been labeled or identified as having mental health challenges.
There is so much more in your reply, but I want to stop here because I have been really impacted by your observation. Thank you…
Chrys, Thank you so much. It sounds like you come from a long line of strong and devoted mothers. (certainly mother bears!).
I really love your beautifully worded observation about the need for mental health care providers to get alongside, support and keep families together.
I don’t think enough attention is given to the loss of parental rights that can occur with psychiatric labeling. As a generation of those labeled and parenting is now burgeoning, this is a critical issue. And a human rights one, as I know you are keenly aware.
Thank you for all the work you do to advocate for human rights, healing and diversity!
Rossa, thanks for making this important distinction. I think it can be helpful for family members to have the opportunity to practice new recovery skills and explore their own emotional needs without necessarily doing so as a whole family.
Recovery seems to be a dance of doing our own personal work, on our own, allowing family members to do the same in their own time and at their own pace (and in their own way), and then coming together and trying to make our relationships more supportive.
It was lovely, however, to see the wisdom, compassion and strength the survivor perspective brought to this family exploration…
I honor your answer. At the very core of it all, I believe how healing unfolds should be determined by the person whose process it is. Personal choice, self-determination, safety, personal empowerment are all so vital. At least they have been in my life and so many recovery stories I read. If these basic human needs are not available and supported in one’s family or origin or choice, then healing may not be possible together. But perhaps the concept of family or tribe is still important? Creating a community that can support these qualities?
That is what we are trying to do here in our online education and through Mother Bear. Create healing communities.
And perhaps families can learn and heal from other families’ survivors and vice versa. That seems to be what is happening in our classes.
Individual healing is always the starting point though. Together or apart. Thank you for sharing. It sounds like you know what supports your wellness and you are honoring it!
Francesca, you raise very valid concerns. As I mentioned in the reply above, that is the case in our classes too. We have a lot of new family combinations where family members can learn from each other across families.
The families we are seeing in our classes may have initially bought into the biochemical theory (the promise of a quick fix is awfully tempting to parents whose guts are being ripped out watching someone they love in pain). But there are no quick fixes, esp. if mental “illness” is not primarily or simply an illness in isolation, but a complex web of relationships and responses to circumstances.
If the biochemical theory were able to offer good, lasting healthy solutions I don’t think our collective state of mental health would be where it is today.
We also have many (most) families who come to us quite hopeless after hearing “my family member is fundamentally flawed” and “can never fully recover.” That is a real hope stealer for everyone involved.
You raise such an important point about the quality and impact of our relationships. In my opinion, this not a mental health question it is an essential human and universal question. But then, that’s precisely what does make it a mental health question!
Our whole course is essentially geared to this question of how can we make our relationships healthy? How do we set healthy, strong, respectful boundaries when they aren’t? We spend a whole week practicing Marshall Rosenberg’s NonViolent Communication skills (or Compassionate Communication as it is also called). Really, this approach takes a lifetime and is, unfortunately, quite new to most of us.
That clarity you refer to is achieved in the NVC approach by learning how to clearly articulate needs, (usually by recognizing feelings as they arise and then exploring possible needs), and to make requests based on those needs, with an expectation of mutuality and desire for both parties to get their essential human needs met.
When and if that can’t occur, boundaries may need to be established. I guess this is a diagnostic process of sorts, but it feels more like an inquiry and is self-focused and not applied to the other person.
There are certainly times when healthy boundaries require people leaving harmful relationships. I don’t suppose our divorce rates would be so high if that weren’t the case. And the natural pattern of children growing up and creating their own families also indicates a natural “moving away” process to some degree.
Thank you mjk, for your important observations. I want to really honor and reaffirm that healing in families may need to happen apart. In our classes, the family members and roles are across the board, but often, it is a mom learning from another family’s daughter, a sister learning from another family’s sister, etc. We are creating new families and practicing trying on other’s perspectives in a safe way…
Duane, I’m wondering if you would set up an automatic email so I can be reminded of this beautiful quote every week!
I think I’ve told you this before, but you are every bit a Papa Bear and we are deeply grateful for the space you have held for so many for so long. Really grateful you are active on Mad In America!
Thank you for raising these important questions regarding recovery. We are well aware of and support those who do not feel recovery is an appropriate word to describe moving through emotional crisis, distress, and/or unbearable circumstances and life’s many double-binds. Back in the fall we devoted a whole blog to this “recovery” dilemma by exploring “what are we recovering from?”
Often transformation, healing and growth seem more appropriate. But we respect the rights of anyone for whom “recovery” is a helpful concept (however they choose to define it for themselves).
In our family mental health education, we ask participants to explore what people may be “recovering” from and we include psychiatric labeling, disempowerment, loss of status and important roles, friends, treatment side effects, stigma. This exploration can be a real eye-opener. On the other hand, many the family members/supporters in our class feel the same way and are grieving that their relative did not receive the compassionate care they had hoped for when they started down the road of trying to relieve suffering. The whole family, in different ways, often grapples with a sense of betrayal, loss of voice, hopelessness.
We spend a lot of time speaking about alternatives, new ways of supporting each other, and also acknowledging there aren’t enough good alternatives right now when the family system is overwhelmed and when individuals need other supports (than family members) to help them become empowered and independent.
We don’t use psychiatric labels in our lessons. We recognize that most families arrive with one or more of them, but we focus on moving beyond labels and focusing on strengths and possibilities. We also look at mental health as a continuum along which we all travel, not discrete categories like pigeon holes or pot holes that we fall into and can never climb out.
And while we share a new paradigm for understanding emotional crisis and distress, what has been most inspiring, for me, is to see the wisdom and compassion that arises within and between our families and class participants. They bring as much to the course as anything we could bring.
I guess, in the end, our job is to create a hopeful, supportive and empowering space to figure out life’s challenges. And not to be afraid of pain, confusion, and mistakes. We are all learning how to be human…
Thank you, Jonah, for your support and encouragement. You truly are a survivor with so much healing to offer.
Thank you Steve. I always appreciate your perspective on so many of the blogs on Mad In America.
As for the real source of institutional change, I couldn’t agree with you more! “We” really are the change, aren’t we? Institutions, as constructs, tend to favor the status quo (from a purely functional viewpoint). I think we humans, on the other hand, are the real change agents. As long as we stick close to and honor what makes us vital and human. And, as you note, hopeful!
Thank you mad mom. We do still have a warm line, on Tuesdays and Thursdays (our hours are listed at http://www.motherbearcan.org). We’re finishing up our warm line training so we can expand our hours and days. Our staff is going to take Emotional-CPR training this fall and we’re excited to share this support with families. Our Hope Line, by the way, is open to “families” in the same way our education is- available to anyone in distress or in need of recovery resources, encouragement or just a compassionate listener.
Hi Rossa, Monica and Duane (who I always appreciate seeing on these blogs!), I would like to express my resonance with everyone’s mixed, hopeful, cautious and concerned responses.
While I’m certainly biased in that we’d love to see more NAMI families join Mother Bear, so Duane’s suggestion above sounds lovely and very unencumbered by past missteps, harms and questionable alliances, I also appreciate Robert Whitaker’s statement that we all share the purpose of wanting the best for those we love. It’s just how we go about doing that and is it the best? As I parent, I know I don’t always know the answer to that. When we don’t know these answers at the organizational level, and push for policies, perhaps the ramifications when we are misguided are writ large.
I do want to share that this blog’s author Claire, is a remarkable woman who is working for change not only in her current position at our local NAMI chapter, but in so many areas of reform. She is a peer, a wellness advocate, a brilliant young woman, and has a big healing vision.
We’re very glad that she is involved in the local NAM where Mother Bear is headquartered as it makes reaching out to like-minded families much easier.
Sera, I always appreciate your blogs and insights. This is a tricky dance and, I imagine, much easier to do with your shoes off sometimes. Which does, of course, risk getting your toes stepped on a lot more!
I’m grateful for all the work Western Mass RLC has and continues to accomplish. Definitely a beacon of hope for many. Thank you for showing up and moving bravely forward, day after day.
I appreciate you challenging/questioning all of us regarding our willingness to engage in concerted “on the ground” efforts to reform/reframe/revision the current mental health care paradigm in real and meaningful ways.
I thought it worth mentioning that Sandra serves on the Board of the Foundation for Excellence in Mental Health Care and is also training in the Open Dialogue model.
There are many on MIA who are taking action to transform mental health care. I would definitely count Dr. Steingard among them. And you.
Thank you for all the hard work you devoted to bringing this resource to life. I am excited to be able to share it with individuals and families through Mother Bear and other networks.
Thanks also for your reminder that there are many pathways to healing, including tapering. Though I think it is extremely helpful to have a strong support network during this process, because medication and tapering side effects can be so powerful (and unanticipated), I appreciate your reminder that many different kinds of people can be supportive through this process. No one gateway.
“Then we might agree to approach each other with genuine curiosity and humanness, values through which the opportunity for growth and understanding can exist.”
Thank you Sean. Reminds me of one of my favorite Rumi quotes,
Out beyond ideas of wrongdoing and rightdoing,
there is a field. I’ll meet you there.
When the soul lies down in that grass,
the world is too full to talk about.
Ideas, language, even the phrase “each other” doesn’t make any sense.
Thank you for approaching this divide with courage, vulnerability and, yes, curiosity. I think it is so easy to get stuck in chasm created by institutional “efficiency” that does not make much room for humanness in any gear in the cog.
Easier to vilify or dehumanize each other, rather than trying to reach a hand across and invite the soul to emerge in a safe space where “each other” doesn’t make any sense… That is the space where healing can happen. But lord knows, it takes hard work and patience to create it in the gaps and cracks. And too many never find it.
It can be all too easy to give up, when we start out disenfranchised and disempowered, but I am encouraged by those historic moments in which beautiful souls like Rosa Parks stand up in defense of humanity despite insurmountable odds.
We never know when we are in such a moment. But we can certainly increase our odds by standing up more often.
With much gratitude for your time traveling and bridge building and surviving,
Once again, I am humbled by your fearless honesty and your ability to not only navigate your pain, but to transcend it with insight and compassion and a deep understanding of the universal nature of this pain.
I have not met many people in my lifetime, including “sages,” who have this capacity, and it begs the question about who really is mentally healthy in this world (or perhaps, who is awake and honest).
I want to echo many who have shared how “normal”/common these feelings are , and also acknowledge the pervasive fear and potentially disastrous consequences of admitting these fears to the wrong people and in the wrong setting. The history and origins of much psychiatric abuse, isn’t it?
I can remember my grandmother saying to me before my daughter was born, “If you feel like locking your child in the refrigerator, that is normal. If you actually do it, that isn’t.” She was not exactly the paragon of motherhood, but that piece of advice has been more comforting than I would have guessed.
I experienced those fleeting feelings myself. And I heard other mom’s share them in La Leche League groups. Your blog reminds me how the same things that make us unwell at any stage of life—isolation, fear, judgment—are things very present for new parents. We need to build more safe communities where we can share openly and without fear.
Thank you for your willingness to speak truth to healing once again…
Cathy, thank you for adding another important layer to this discussion. I hear you, and know first hand, how debilitating a full-blown panic attack can be (and prolonged fight-or-flight anxiety).
I can’t remember where I first heard this phrase, “Something that is perceived as real is real in its impacts.” Perception is everything isn’t it? And, I think it is so important to start with the perception of someone who is suffering and acknowledging their very real pain. As I write this, as a mom, I know I am guilty of overlooking this. I’m making a silent vow to do better…
Thank you, thank you, for giving voice to this need we all have. To be validated in our pain (and celebrated in our joy and all the rest of the human experience).
I’m not sure this has gotten as much attention in this thread, but one challenge with CBT could be that when we are in survival mode, our thinking mind can shut off. What may be most helpful is to work on the traumatic feelings coming up in the present moment.
I hesitate to use the word “non rational” response, because when our body is is fight, flight, freeze or collapse, any number of extreme choices may “feel” entirely appropriate to our internal survival system (even anti-survival).
I believe Nijinksy mentioned earlier that gentler approaches may help lead us to a more hopeful set of choices and responses. Perhaps mindful breathing with a friend or reaching out, with permission, to offer a steadying hand, could help us move out of fearful or despairing reactivity and into a more grounded place where truer/more choice(s) can be possible.
Hi all, earlier in the blog responses an interesting discussion has been bubbling about choice and when it is informed, free, and restricted. One issue that came up, among many, is psychiatric medications and their impacts and influence on suicidal feelings/impulses/actions.
I mentioned that there is little information on the enhanced risk of suicidality with the medication “cocktails” that are frequently involved in those experiencing emotional distress.
I would like to offer one of the few resources I know that can help decipher those risks, Dr. David Healy’s Rxisk.org website. There is a link at the bottom of every MIA page, including on this blog page. There is a way to check side effect risks with multiple medications.
Of course, Rxisk.org focuses only to the medication risks (which are by no means insignificant).
Logic and intuition would encourage consideration of the manyfold factors that, in combination with medications, can limit rational choice-making around suicide (for more on the idea of “freely chosen” suicide, please review the comments above).
I would also like to encourage followers of this blog to at least skim through the comments (they are worthy of a full read, as many have contributed greatly to this discussion).
There have been a number of resources regarding suicide awareness, support, causality, rights, and more that have been shared throughout the comments section that you may wish to explore further.
We will try to incorporate many of them on our Mother Bear website, http://www.motherbearcan.org, in our resources section.
Amen, Joanna! We do need to address the roots of systemic abuse and neglect until we are all liberated. Every last one of us.
There is another teaching that I resonate with in Buddhism, the Bodhisattva’s promise to return to this world again and again until all beings are relieved of suffering.
I believe this concept is a part of every wisdom tradition and I feel it coursing through your veins. I am grateful for your warrior spirit!
aek, thank you for this link. It sounds like a rich set resources.
It is seems so painfully obvious, as in your dog training example, that the only effective and “sane” responses to expressions of suicidal feelings and attempts are love, compassion, unconditional acceptance and support finding life-giving options.
Honestly, does it take a PhD, an MD, and LCSW or an ER tech to figure this out? Does it take a whole branch of Sociology? Does it take death after death after death…?
Apparently so, to our disgrace.
Thank you for joining and enriching our conversation!
I want to offer support for what you are both saying. It seems to me that you actually are not so far apart, but that words are getting in the way of feeling that.
You both have been so helpful in deepening my understanding around this topic. I hope that comes through with the sincerity that I feel.
And Joanna, I had not seen your comment about catatrosphizing feeling pathologizing before I used that word choice in a response above.
I can’t speak for Jonah (who does a much better job of speaking for himself ;-), but I can explain that what I mean by that term, based on my own experience of terror, is a feeling that the world is coming down around me, that my very survival is threatened at a basic level, that extinction seems a very real possibility (and not by my hand). It involves a somewhat involuntary (or at least irresistible pull) to play out any number of “what if” scenarios, none of which end well. And, interestingly, the ability to stack multifold disaster scenarios to “cover my bases.” If one disaster doesn’t pan out, then surely the next one will.
The whole cognitive therapy behavioral approach, which does not have to be an approach or a therapist, simply a good friend or trusted advisor, is to untangle the “what if” knots, get out of the future, and breathe into and live in the present. It is all we have to work with anyway. I have found the only real choices I have are available in this present moment.
This may or may not be what Jonah was trying to convey in the situation specific to homelessness, but I’d like to share a particular scenario that played out in the height (or depth) of my grief and accompanying anxiety. I would definitely call this a catastrophizing scenario as that rings true to my experience.
Shortly after my grandmother died, I became convinced that I was going to lose all sources of income and ability to support myself.
I did not lose my grandmother (who was my first mother), until I was nearly 40 years old, and it was my first intimate experience of death (a blessing and a curse I guess, not a lot of practice).
My grandmother had occupied a large continent in my “the world is a safe place” cognitive map. With her death, there was a giant gaping hole in my world view.
Looking back, I can see that in losing her, I also lost my safe footing in this world (I hadn’t done the work of providing safe footing for myself, content to let her hold that for me). In my grief, I conflated my income and my home with the safety I was desperately looking for outside myself (where it had never been, even in my dear grandmother’s arms).
So, I would replay various scenarios of losing my livelihood, my house, my family, etc. There were many creative but disturbing ways that played out. I worked long and hard with a CBT practitioner to recognize how “unlikely” many of these scenarios were, however, the most helpful question, in the end, was this (and I’m not sure who asked it):
“Let’s assume you do lose everything, what now?”
The question I feared most, when asked out loud, was actually liberating. My mind was able to come up with lots of options and choices.
Okay, well, I know there is a shelter on such and such street. Oh, yes, well, there is a women’s shelter that takes children too. I could get a minimum wage job. No one wants those. If I got one in food service, I might get some food as well. Well, there is Section 8 housing. And Homeward Bound. Maybe I’d qualify for services. Maybe I could help others in the shelter. Do some empowerment circles.
Honestly, the creativity that question unleashed was shocking. All the sudden there were lots of options and choices. None of them what I would prefer, but, given a new reality, I could see that I could create new opportunities in the chaos. That was actually very empowering. And, because our system in the US stinks too, I used all those “what if’s” to create back up plans. Pretty good ones, I might add. Shelters gave way to living in tents in friends’ back yards. Looking for house sitting opportunities. etc.
None of this is shared to diminish the real pain, hopelessness and despair of losing your home, job, family and other traumas. They are traumatic. Deeply so. And no doubt they have led to untold suicides. Here in the US, during the Great Depression, many literally lept to their death after the stock market crashed.
But, perhaps, all hope is not lost when we lose these material things. And maybe we can share that with our friends (and a place to sleep and something to eat) if and when the unthinkable happens.
Which is not to say that we should not fight, tooth and nail, to provide stable housing, food and compassionate care for all of our citizens.
There is a Buddhist saying I once heard,
“We cannot build our happiness on the suffering of another.”
I believe this to be true.
Thank you, Joanna, for living and advocating for our collective happiness.
Your story has pierced my heart. Again. This. has. got. to. stop.
Even if we have the grace to acknowledge that perhaps all of these harms are done with the best of intentions, that systems and bureaucracies don’t need evil intention to commit evil, we are all complicit in crimes against humanity as long as we don’t speak up and out against them.
It sounds like your words have been strong and tireless but have fell on deaf ears. For your dear friend, I am so sorry that your words were not heard in time to save her life.
Perhaps it is some comfort that your precious friend heard them? Even in her time of intense suffering, to have you validate her life and rights? I hope so, Nijinsky. I do believe our words and hearts have the ability to heal beyond this lifetime. I hope I am right.
I am also glad you honored your boundaries. You are not the only one who has been in this exquisitely painful situation of foreseeing an outcome that you feel powerless to change, and trying to change it anyway. And having to say goodbye too soon. Unfortunately, so many on this website share this story. Too many.
Thank you for telling your friend’s story here. It is welcome. And heard.
I also want to acknowledge the inherent challenges in knowing when choice is truly choice.
As you and many others have shared, involuntary treatment, hospitalization and various forms of institutional neglect and abuse can engender and intensify suicidal feelings and desires and lead to completed acts. Under these circumstances, we may still be looking at a choice, but I would argue it is a forced one created by choices made on behalf of someone in distress that severely limits other choices.
So many of our psychiatric medications carry the risk of suicidality, and we have NO idea how much this risk is intensified in the drug cocktails that are so commonly prescribed to and taken by those in distress. And the suicidality risk that accompanies sudden or rapid withdrawal from psychiatric and other medications, withdrawal choices that are often attempts to reduce other life-diminishing side effects. Talk about a black box warning (that we are not heeding).
Catastrophizing limits our range of choices, sudden displacement from homes and jobs, trauma, abuse, death of a significant other, and other life-changing events may contribute to catastrophizing and limited or faulty choice making.
This issue of choice and free will is so important. Perhaps the best we can do is to always make as many life-giving choices available as possible, to encourage each of us to make our own choices with as much information, support and time as we can muster.
And to do our best, collectively and for the greatest good, to dismantle systems that rob us of our birthright to choose and determine the quality of our lives without robbing others of this same precious right.
I am grateful to be learning from all of you in how to accomplish this important work…
I most certainly welcome your opinion regarding choice! And what beautiful insights arose from your response. Thank you for being vulnerable and stretching further into this space.
I can see the importance of not stripping the dignity of someone for whom suicide is the most powerful choice they believe they can make. And, as we’ve acknowledged, we seem to be able to hold this respectful stance when we look at end-of-life issues where someone is ravaged by physical disease.
I know I just opened myself up here by bringing the D word in, but I mean only to make the point that we are better able to accept and honor end-of-life choices when we can “see” the pain in the form of some crippling physical deformity and/or severe functional limitation.
Lest we begin celebrating every suicidal act, I appreciate your equally important point that doing nothing, “wei wu wei,” is one of the most powerful ways we can support each other. I would add “wei wu wei *with*” (not sure how you Lao Tzu would say “being with friends of your choice”). Doing nothing when someone is in despair *and* isolation may not improve matters. Though it may still resolve these feelings as time alone can be a wonderful healer. But not always.
Essentially, when I was in my darkest despair, my friend did nothing but be with me. No more, no less. But no leaving. No turning away from my pain. This was and is a life-changing memory.
Thank you for bring what feels like very important medicine to this topic.
It is the very thing that was not given to several beautiful souls who have shared their experiences (or their friends’) here. I can’t imagine how many millions each day fail to receive this loving “doing by not doing” presence.
I am also grateful that you brought up CBT and catastrophizing in your response below.
I am not unfamiliar with this process and the flight-or-flight limbic responses that can accompany it. My grandmother’s death and my subsequent deep grieving process was a crash course in catatstrophizing, in fact.
I worked with a Mindfulness CBT practitioner to learn to recognize and work through this way of responding to overwhelming stress and fear.
Again, having a calm friend during these times was very helpful. Not to argue or contradict my perhaps unrealistic fears and predictions, but to hold a safe space until I can wend my way back from a future I can’t really know or predict without more information (and, even then, not really).
Jonah, you have enriched this discussion, I am grateful for your thoughtful and vocal presence. Jen
Dorothy, bless you in yours too. This pain is so very deep. I think it must either break your heart into pieces or break it open. Perhaps the first and then the latter. You and Paris both have taken this pain and used it to heal…
I am grateful for your questions and contributions here (and on so many blogs). I want to highlight a few of your comments for response because I find them so valuable..
A person on the brink of suicide is also highly alarmed and doesn’t need more alarming contributions,
This is incredibly important. And a point I was trying to make, but which may have been missed. Adding fear to fear results in predictable tragedies. As well-intentioned as the first responders were in this local suicide, I can’t imagine a worse response to someone in crisis. I can imagine an emotional seismograph registering mass fear in that situation (amplified by all those who were channeling it).
Similarly, sensational news accounts can and often do make matters worse. When I got my journalism degree, it was common knowledge “if it bleeds, it leads.” No bias there.
For my family’s own mental health, we long ago stopped watching the nightly news and taking the daily paper. I had to give up my daily dose of All Things Considered when the economy tanked.
Points well taken. Our media is biased (on the left and right) if for nothing else, commercial interest and to keep their own viability (as noted by magazines and newspapers folding left and right). Alarm sells. So do advertisers. And the ones taking out the biggest ads are often pharmaceutical companies…
Is it really wise to have the focus on why wasn’t this more in the news, rather than don’t buy into all of this alarm and you will be to relate to the person whose life you are trying to save?
Definitely not. The wildly disparate news coverage on that day was just an interesting (and sad) metaphor about what we will talk about as a society, ad nauseum, and what we won’t.
My concern was that there were so many people in our community who were personally witness to and connected to this tragedy. School children, hundreds of commuters, dozens of first responders and their families, not to mention the family and friends who now have a gaping hole left by this young man’s departure.
The lack of news coverage correlated with a lack of local community support. Everyone was left to “deal with it” (or not) on their own, in silence.
I have the opportunity to work with many local therapists and many were completely unaware that this ever happened.
I can also contrast this with a sudden death that occurred last year. My daughter’s piano teacher and my friend, Paul, died suddenly and unexpectedly. He was in his mid 40s. He ran our local music school. My daughter and I were in shock, and so were many other children and families. The community snapped into action, while there wasn’t a whole ton of press for Paul either, we had bereavement teams at the music school, trauma specialists volunteered their services, counseling centers offered to make sure people had support regardless of ability to pay, meal and visit calendars were created that fed and held Paul’s grieving partner for months.
At his funeral, the large church was filled to overflowing. My daughter and I attended on her birthday (Paul’s strange gift to us). And we celebrated a life well lived and much missed, out in the open, in the light of day.
The profound silence surrounding this suicide (a silence I believe to be common in many communities across the country) robs communities of the chance to grieve and heal together, to celebrate a human life together, to acknowledge every life has meaning, no matter how short, and to look at ways we might better relate to each other in that very personal, safe and compassionate way I think you are advocating.
I’m not sure we can move beyond alarm and fear if we can’t begin talking about death, and life, and suffering more openly without institutional overreaction. I do appreciate your suggestion that media coverage can most certainly be part of this overreaction.
Your friend’s story is so incomprehensibly sad. It is as if everything conspired to fail your friend in her greatest time of need. That it left no doubt in your mind what your life’s work would and should be does seem to be her parting gift to you.
That you have hope and resolve in spite of this personal loss inspires me as well. I am imagining you scooping her up, mid-leap, and jumping off a different cliff, this time, with a hang glider and your fearless piloting. Bless you in your work.
Irene, this is an excellent point. I think ideally we learn to have conversations about overwhelming and hopeless feelings, and good ways to support ourselves and others during those discussions (like breathing, pausing, grounding, resourcing, for those who can do these things).
When someone is at the point that ending their life is what is “up” for them, then gentle languaging like you suggest does sound helpful. It may be that validating the rawness and intensity of these desires may be helpful too. And the normalcy of them.
You are bringing up a good point, if I’m understanding you, about the vicarious trauma that people may experience when they talk about suicidal feelings or acts, especially if the person experiencing them is known to them.
I wonder if much could be learned by looking at cultures where death is a more open topic of discussion and is less encumbered by fear.
Joanna, I”m not sure about self harm. That is a good question. Whether or not one is admitted to or evaluated in the ER, and how helpful that is, is another good question. As others have shared, this can lead to more trauma. No easy answers here.
Our systems are broken in many ways. Which is why community-based, non-medical care is so attractive to so many reformers. We may need to create the care we need and not wait for lumbering, well-lobbied and misguided bureaucracies to create it for us.
Joanna, this is unconscionable. Thank goodness you are there to speak out. Are there any advocacy groups in the UK that are working to redress these issues? Any avenues outside the system for support? I had heard there was a movement to create a healing center there called Chy-Sawel (sp?) but I”m not sure this lifted off the ground.
Does the Hearing Voices Network there do advocacy around these issues?
I would love to hear you have support and a platform for your concerns. It sounds like you are shouting into the wind…
Steve, thank you for sharing your insights. As a mother of two school-aged children, I couldn’t agree with your recommendations more. In fact, our family mental health organization (Mother Bear: Families for Mental Health) has been going into middle schools to discuss and interact with children around labeling and bullying and the impact of “creating others” on the human spirit. It is not surprising that everyone has felt the sting and weight of a label, and has contributed to and been the victim of bullying. If mental health doesn’t start here, it certainly checks in…
I also appreciate your call to civility. I’m not sure we fully appreciate how much this is tied to our collective wellbeing. I really got a sense of this more deeply after recently completing a workshop with Parker Palmer, a Quaker educator, philosopher and author.
I would like to share five “habits of the heart” that Parker shared are vital for making true democracy possible. They are adapted from his excellent book, “Healing the Heart of Democracy: The Courage to Create a Politics Worthy of the Human Spirit”
I hope you will find them as resonant as I did.
1. An understanding that we are all in this together
2. An appreciation of the value of “otherness”
3. An ability to hold tension in life-giving ways
4. A sense of personal voice and agency
5. A capacity to create community
Interestingly, Parker has himself experienced three bouts with deep depression, which we writes eloquently about in his book, “Let Your Life Speak.”
It is a recognition of our common humanity and the supportive social environment that you advocate for, Steve, that were crucial for his healing among other things.
Thank you for your sharing your wisdom and heart. It has broadened the lens on this topic.
I also like the idea of critical mass and tipping points. It is easy to bully or marginalize someone in isolation from their support networks (there does seem to be a parallel here to our system of care), but, en mass, it is harder to ignore humanity’s call.
I’m thinking of that bridge in Selma, Alabama. Perhaps MIA and our alternative networks are similar to the churches in the South. A place to go, be reminded of human rights and our dignity, to become strong in our resolve. But, at some point, we have to walk out of those churches and engage in civil discourse, nonviolent protests, and the courageous heart-to-heart dialogues with those who hold different views.
But we don’t have to do it alone. Thank you, Paris, for taking the first few steps on this particular bridge. See you there!
Wow Paris! Disciplinary foster home? You are a master of self control and courageous risk taking. I can imagine two of your greatest gifts might have been at great risk of being extinguished had your family chosen to medicate your intensity.
Thank you for this invitation to join the NAMI discussion. I should like to invite them to explore Mother Bear for alternative approaches to understanding mental health challenges, how family members, friends and allies can support them and move toward real transformation and healing.
Sera, thank you for starting another courageous and important conversation with us and through your own beautiful body (and yes, it is, beautiful, and yes, I get how little my saying it means stacked against a lifetime of culturally approved self loathing).
Yet another thing we share, this journey. You are right, it is all too common. I trekked through years of starvation, binging, a graduate degree devoted to deconstructing the objectification of women, and decades of meditation trying to work this one out. Thought I had in some ways. Not so quick.
It was the gift of two beautiful girls that reminded me how far we have to go. That we ALL have to be liberated from this morbid obsession and fetishism with what is NOT beautiful (how crazy is that?!).
My feminist parenting checklist:
No women’s magazines allowed in house. Check.
(They still look every time we check out at the grocery store)
No discussion of weight in our house. Check.
(“Mom, am I fat?” My underweight 8 year old asks. What the hell?!)
No Barbies. Check.
(My oldest daughter is beginning to look like Skipper.)
No vanity/vacuous TV programming. Check.
(We watch Hulu to avoid the bulk of commercials. Helpful for avoiding pharma ads too.)
And still, I have two girls who are conscious about their weight. I still worry about their body image.
For me, I think I only began to heal a part of my own body politics when an extended bout of anxiety resulted in a dramatic weight loss that surpassed my high school eating disordered days. I was seriously considering the Ensure shakes (so was my family doc).
During this time, I went on a weeklong silent meditation retreat and realized, with my whole frail body, that I didn’t believe, at some core level, that I had the right to take up space.
This has become a new practice for me. Taking up space. Embodiment (uncomfortable, uncharted territory for someone used to living only in her head).
Do I still feel bad when I look in the mirror? Yes, sometimes. Do I still avoid the camera? (always!). Do I still worry about my girls’ self image? (big time, especially as high school looms near).
But I am committed to taking up more space, and feeling like I have a right to it. That we all have a right to inhabit our bodies and lives. A right to live our lives LARGE.
It’s a long road… I’m grateful to know you are in it with me.
Dear Dorothy, thank you for sharing Sean’s wonderful work and for connecting us. I look forward to learning from him and sharing with our local community and also our Mother Bear network of families. Western Mass RLC is such an amazing resource!
Irene, I always treasure your insights! Peter Levine’s Somatic Experiencing work is invaluable, and it was what I had in mind when I made the statement you quoted.
In fact, in our local Family Den support meetings, we are looking at the various ways distress can be understood and defined (or explored). We are looking at trauma as one of the ways to understand distress, and we have invited an SE Practitioner and Trauma Resource Institute master trainer to share practical ways individuals and families can resource and support ourselves in healing our individual and collective distress. Accessing our strengths and safety in community are great ways to do this.
Cathy, I am so sorry to hear of the silence surrounding your brother’s death, what sounds like the may have been institutional even if unintentional bullying from the mental health system when you spoke up about being bullied, and the reactions you received when you did have the courage to reach out and share your extreme distress in the women’s shelter, distress which, by the sounds of it, was an understandable response to a very challenging and chaotic time in your life.
I wonder how your healing would have unfolded if you had been met, each step of the way, with the genuine caring and understanding that you were seeking.
I think you are right, It really is that simple. But we need to support each other in giving and receiving this kind of care. And being fearless about it. I think the more of us speak up and out, the more space we create for this kind of heartfelt support and witnessing.
I am so grateful to those who have shared their experiences with suicidal feelings and actions in response to this blog. I was hopeful this might be an opportunity for a healing dialogue as well as to share what has been most helpful during these times in our lives.
While I have never tried to commit suicide, nor entertained or developed specific plans to end my life, there have been a few very painful times in my life where I have gone to bed wishing I would never wake up and have awakened for days on end regretting I that had (awakened), with no will to live much less get out of bed.
I can remember how vaguely disconcerting it was to realize I had lost the will to live, which felt decidedly different than the “please just make the pain stop whatever it takes” place I had occupied just prior, a place that although charged with destructive energy, still had some life in it.
I entered this soul-dead place for several months in my late 30s, about 6 months after my grandmother died (and 8 months after my mother-in-law passed on after losing a painful battle with cancer).
I had spent my first year of life with my grandmother, and she had always been my spiritual guide, my living archetype for unconditional love and my number one supporter regardless of what I thought of or did to myself. My grief over her loss was profound; however, since it did not hit me with its full force until 6 months later, it was labeled and treated as depression.
Inappropriately prescribed mood-destabilizing medications, grief, the stress of motherhood and community service landed me in bed, literally, unable and unwilling to get up. My life had become unbearable. And there I lay in the grey half-light, curtains tightly drawn, for several weeks.
Here is what helped during that time when almost nothing helped:
• Friends and family that came by and whisked my girls off on adventures that gave them the chance to access joy and normalcy when it was in short supply at home.
• My husband who let me rest. While it didn’t feel good or healthy at the time and worried many, perhaps, in the end, all that sleep wasn’t all bad either.
• My physician friends who knew what would happen if they took me to the hospital, and so, they didn’t, and made house calls instead.
And, perhaps most importantly, one dear friend who called every day just to check in, who didn’t require me to talk or to listen. Just to answer the phone. The same friend who sat on the edge of my bed on more than one occasion, in my darkened room, who just listened and sat vigil while I cried.
She did not try to tell me life would get better (though it did), or that the pain would recede (though it has waxed and waned), or that time would heal all wounds (though it has certainly helped).
She just sat with me. And had faith in me. And didn’t run away from my pain. Until I could be brave enough not to run away from my pain either.
I wish that kind of friend for us all. And I am grateful for my friends and family who helped hold it safe for me until I was able to hold it again.
Stephen, I’m so glad you insisted on talking about it! There is no small irony in your situation.
Joanna, it is not uncommon for any therapist or doctor in the US to follow this drill when working with a client who is very depressed and expresses any self harming ideas…. “Do you have a plan? Do you have the means?” If the answer is yes, involuntary hospitalizations often follow.
Unfortunately, or fortunately as the case may be, many people are aware of this possibility and thus do not disclose this information to care providers.
Dear Jonah, I really appreciate you bringing up this point. I have also been thinking about the clear parallels with movements such as the right to die with dignity and assisted suicide for terminally or chronically ill and severley disabled (and/or in pain) individuals.
This is a really, really important point and I would hope that we could be fearless in including it in our conversations as well.
Is suicide a choice? Is is a right? Can it be chemically induced? Can it be a response to ongoing trauma and abuse such as the repeated involuntary hospitalizations and treatments you recount (for which I wish you hadn’t experienced)? Can it be an act of passionate impulse? A long planned choice?
I’m guessing, if we’re honest, we could answer Yes. No. Or Sometimes in each case. But it would be nice to find out. And to then talk about what we do with those answers and insights, how they related to individual freedoms, and if we should do anything, and when, and how? All things that are probably best decided by those involved not top-down, depersonalized systems.
Thank you for asking us all to think about when suicides are tragedies and when they might be something else. A very good question. I, for one, would like to prevent the tragedies. Life is so precious and fleeting, if hope can be restored, I’m all for it. (At least, that’s what I’d want you to remind me if I find myself in that dark place again…)
Thank you for bringing up the connection between socio-economic conditions and suicidality and emotional distress.
We all need safe and reliable housing, food, clothing and healthy human connection, not only for our mental health, but for our very survival as a species. There is no doubt that a lack in any of these areas can create despair and hopelessness that can manifest in all sorts of tragedies, including suicide.
I would love to see more non-medical sanctuaries such as you suggest, where people who are suffering can be nurtured with respect, dignity and compassion and free from fear.
Even more so, I would love to see us all be able to reach out and talk openly about these feelings and impulses without fear of involuntary treatment or hospitalization so that we can get support without necessarily needing a sanctuary, or perhaps by making sanctuaries in our homes, places of worship and other safe places where people gather to connect and share that can help normalize the experience and the experiencer.
Dear Monica, thank you. I look forward to reading your blog on this topic. I love your blog but had missed this one.
Thank you for speaking to the need for supporters who can bring calm loving presence, not fear, to the vigil. I agree, this is vital. In fact, it was probably what was most absent that hour on the bridge before the jump. Our collective fear. The lack of news coverage and general silence speak to our ever present and deeply entrenched fear of death.
As a young meditator, I was horrified at the instruction to meditate on my own death. After 20 years and the loss of so many friends and loved ones, I think I finally get it. Perhaps we all need to meditate on this and then speak openly and often about what it means to be human and vulnerable and to suffer.
Monica, we have some lovely friends in common, so I have been aware we are neighbors, and I would love to join you in your garden when that feels good. I’ll send you a note with my contact info via Beyond Meds.
I am not surprised you didn’t know about the suicide. Most of the practitioners in our local mental health community are still unaware. Another irony. Susan Reinhardt ran a Sunday feature on it a week later but she ended up focusing more on Mother Bear. We can’t seem to stay present with the pain…
Thank you, Steve. I agree that excruciating emotional and physical pain (often a whole body experience) coupled with loss of hope and isolation are soul killing and often lead to predictable tragedies.
It is not hard to understand why someone would want to end unbearable pain that they have no hope of relieving. Not hard to understand, but there is so much we can do to restore the spark of hope. Pain is such much more bearable when it is shared with others who genuinely care about our wellbeing, who can help us hold this pain without adding their own fear, who can remind us dark nights of the soul are universal and normal, who can simply be with our pain until we can find our way out or at least imagine the possibility of a way out.
I would love to hear your thoughts about ways we can become more caring, supportive and civil around suffering.
Duane, thank you for sharing John Donne’s beautiful line. We are all diminished by these losses.
And thank you for inspiring our work at Mother Bear. We adopted you into our clan long ago, brother bear! Thank you also for saving lives by promoting possibilities for discovery (love this!), transformation and recovery.
Lucy, thank you for speaking up and out to support alternative and humanizing perspectives on emotional distress and mental health challenges. I am encouraged by the DCP’s move. And the press it is garnering. We have professional groups in the US trying the challenge the medical model as well, but their voices seem to get lost in the din and the dazzle of new frontiers of brain research.
Thank you Duane. Agree about the big tent. The conservative issue just came up at Peter Breggin’s conference last month. He made the point that there had been many times, including recently, when more liberal-leaning press were not as supportive as conservative press. People are concerned across the spectrum, and not concerned across the spectrum too. And harm is done on both sides of the political aisle.
Thank you for pointing out the very real dilemma individuals, families and providers in a “system of care” are facing. Truly, a “can’t-win-for-losing” dilemma that encourages individuals to ask for and accept diagnostic labels for insurance coverage, encourages parents to “disown” their adult children in acute distress so they can qualify for public aid, and encourages parents of young children to seek diagnoses to get learning accommodations in school settings.
With regard to parents of young children and classification systems, I recently witnessed a disturbing exchange during a presentation on supporting families with “children with severe mental illness.”
In response to the parent educators’ insistence that children need to be diagnosed early to get much-needed treatment and access to services, a parent and peer family worker shared that it was much better to get an autism diagnosis than a severe emotional disturbance diagnosis, because the latter has resulted in institutional discrimination for her daughter, who is no longer allowed to participate in after school activities, clubs, sports, etc.
Despite this discrimination and limiting of her child’s social opportunities, she had no overarching concern about labeling her child, just about picking the wrong label, as if we could pick and choose (well…).
I was stupefied as other parents then asked about which diagnoses were best for accessing services. There was no question, save in my mind, that the diagnoses themselves were a problem. Or that there might be another way to support our children’s divergent emotional and learning needs. My audible question to this effect met with blank stares. As did my question about using WRAP for Kids or acknowledging the role of trauma, resilience and developmental and attachment issues.
Brain disorders and diagnoses were far more interesting and, certainly, grease the wheels of insurance coding, office reimbursement and benefit payouts much more efficiently. A process we are all complicit in, as this exchange proved.
I’m not sure I have a better answer than your “safety net” insurance idea (which is not bad, by the way), but I guess I do fall back on the belief that we should avoid diagnoses altogether, if at all possible, especially when talking about children under 18 who do not have their own agency or sovereignity and for whom the effects of diagnosing can be catastrophic.
I really feel for the position you are in. So many people who so desperately need care and have to work within an imperfect system to get it. I appreciate you hanging in there and trying to make a real difference.
If you have followed any of Dr. David Healy’s recent posts, you might be inclined to leave the scientifically tested treatments behind too. These are not without their own biases, observer error and misapplications of the scientific method, a method which philosophers and quantum physicists don’t necessarily embrace in part or whole either.
I appreciate Laura’s concern and desire to start with our individual human attempts to make meaning from and negotiate our suffering, and to work patiently, lovingly and respectfully from there.
Laura, I also appreciate your compassion for those for whom diagnoses, labels, and potentially harmful treatments are still part of their meaning making process.
It is a tangled web we have woven and it may take quite some time for the unravelling.
Like you, I worry that NIMH’s new direction, brain mapping and other wildly expensive “brain science” research may be the birth of even more powerful spinnerets whose entrapment may extend well beyond that of the current DSM or, at the very least, keep us stuck in a web of diseases and despair.
Thanks Matthew for your determination to keep the site and all its valuable resources secure. I’m not sure why the Lone Gunman are coming to mind, but then I did name my first-born Gillian 😉
And on a very practical note, bless you for bringing up the issue around exercise. It is a double damn with psych meds. Maybe an exponential damn, which includes
* Unhealthy weight gain that accompanies many of of these medications
* Side effects that can steal the will to exercise and make it very uncomfortable during exercise (dizziness, deep fatigue, hot flashes, nausea, etc.)
* The frustration of trying to work with a new body that doesn’t seem to be working with you
* Discouraging research that shows little improvement in mood for those on anti-depressants who exercise (the exercise only, or exercise and talk therapy approaches showing the best outcomes)
Metabolic disorders and weight gain are so common with some of these medications, that exercise should still be a goal, but I have tremendous compassion for the mountain that must be climbed to do so. Too bad that doesn’t burn calories.
Monica, I am in tears reading your love story of your healing, which goes beyond your beautiful life to include, as you said, everything. I feel you sparkling in this web of life.
I have been following (and recommending) your blog, BeyondMeds, for almost two years now, and I remember when you didn’t have hope (or perhaps that was me) that you could find relief from the debilitating pain caused by long-term psychiatric drug use.
Your journey and insights are deeply inspiring. So many of us, myself included, are working on healing deep pain and embracing the lives we have been given – messy, painful, traumatic, boring, exciting, mysterious, and joyful – all of it without exception. But the state of grace you describe takes a warrior to find and a gentle soul to embrace.
I hope our paths cross some day. I appreciate your life and celebrate your healing!
Thank you again, Douglas. I know community has been really important for maintaining any mindfulness practice (which helps me work with my own challenging emotions). I think it is even more important to have good friends and supports to keep us connected to our will to live and our meaning and purpose in life.
I’ll look forward to your post and appreciate your willingness to share so intimately from your life. These feelings are do common, but so few of us will talk about them.
Thank you for normalizing suicidal feelings and for showing up us ways to work with them that are life giving.
Thank you for sharing this important technique for working with deep distress. I have used mindfulness practices for more than 20 years and there have been times when mindful breathing was the only way to get through the next moment, and the next, and the next.
I wanted to recommend another resource that I have found very helpful. Philip Moffit’s book, “Dancing With Life: Buddhist insights for finding meaning and joy in the face of suffering.” I have read this book twice with my sangha (faith community) and have found it invaluable for developing specific practices and attitudes toward our own and other’s suffering. Philip talks at length about how to bear up under pain and how to transform it with mindfulness.
I would like to point out how important it was that I did this mindfulness work in community (no need for a spiritual community, it could even be just a few friends practicing together). Sometimes we need to share our pain, to unburden, long enough to take a collective healing breath. Alone, it can be hard to “get on the cushion” and also easy to get trapped there.
Being able to bear pain is greatly enhanced by having supportive friends who can help bear witness to our pain, as in the relationship you have with your MBSR friend and practitioner. I think, often, this need for witnessing is part of public suicide attempts. We need others to understand the depth of our pain, not just learn to breathe through it. But breathing through it can keep us alive, no doubt.
I am so glad that you found this practice and your friend at a critical time, and appreciate your sharing it for others’ benefit.
For those who are interested, here is a link to the book I recommended and a website with exercises and reflections:
Thank you Will for raising this topic over and over again. There is still far too much silence and shame on this subject.
I have recently come to realize just how much double binds and unbearable dilemmas play into hopelessness and despair, and how rational death can seem as a way out of seemingly “no way out” situations that our culture seems to foster and multiply.
It really does matter that we have safe spaces to confide our innermost pain. To lay it out openly, look at the pieces and implications, and have the time and fearless support to make meaning of our darkest emotions.
I do find some irony in the role context plays.
Buddhist monks and acolytes are often instructed to spend a good deal of time contemplating their death. When possible, to meditate in charnel grounds. To be with the very intimate experience of dying in the flesh. It is believed that only by fully embracing one’s death can we hope to embrace life (and choose wisely how to live it).
Natural childbirth and indigenous rites of passage and vision quests often involve a metaphoric death of one life to enable rebirth in a new form.
And, perhaps most simply, in our culture where we are told to buck up and “suck it up,” we create a false “do or die” dilemma that can make a suicide attempt the first legitimate bid for help, love and support, a bid that becomes can become its own double bind and self fulfilling prophesy.
That you for creating an in between space for calling our greatest humanness forward.
I would like to echo Louisa in haring my gratitude for your clarity with regard to the harm wrought by accepting the mental illness paradigm and your compassion regarding the millions of us who have bought into this paradigm, seeking healing and relief from intense psychic pain. I think the survivor and anti psychiatry movements can inadvertently heap shame upon shame for those who have already suffered greatly.
I also appreciate your recognition of the tremendous resilience of the human spirit. Linda’s story is a beautifully written triumph of the spirit (and the abiding love of her family, another unexplored theme). That she could reclaim her eloquent voice and a growing sense of self in the face of such extensive trauma and toxic over medication is nothing short of miraculous.
And Linda has “come back” with eyes still wide open to the fact that life does present seemingly irresolvable deep dilemmas. We are born to die. We will leave our children parent less. They may well leave us childless (particularly as we medicate them at earlier ages and given our increasingly unhealthy culture). We will suffer losses big and small throughout our lives. Sometimes these losses will feel unbearable, particularly if we lack robust social support.
An entire world religion emerged 3,000 years ago (perhaps all religions stem from this dilemma) to address this profound fact: suffering is an intrinsic part of life. But so is joy, and love, and meaning, and connection, and transformation and growth. If we try to numb one, we risk numbing all.
It strikes me as a bit audacious and, yes, deluded, that in a little more than half a century, we have come to believe that medicine can eradicate suffering. A rabbit hole harder to escape than denial and distraction, our previous “go to” drugs of choice.
But even then, we can slip the gauntlet, as Linda’s remarkable story shows. Ours is the work of ensuring all of us can slip it, because far too many don’t under our current diseased paradigm.
Kelly, thank you for sharing this perspective on the transformative and healthy process of intense pain, in this case unmedicated natural childbirth, and the importance of have a “midwife,” someone who bears witness, gently guides, reminds mothers of their inner strength and the millennial “heroine’s journey” all the while remaining confident that all will be well no matter the fear or intensity of the process.
I would like to echo Steve as I feel it is really important to use the midwifery and childbirth metaphor when contemplating how we can support others going through other birthing processes, which extreme states can often signify.
We need more midwives and doulas in psychiatry, psychology and among our families and friends.
David, thank you for your elegant deconstruction of Bad Pharma”s central arguments and blind spots. Your analysis of Goldacre’s book reminds me, with some alarm, of colonial hegemony. To consider that EBM and RCT’s can be used to further chain us to a corrupt system, and that we are clamoring for it (with the best of intentions), is chilling. It is also a marketing and public relations coup d’état, one rarely achieved so brilliantly.
Sociologists and marketeers have long known that statistics can be manipulated to serve any argument. The former profession has long prized qualitative data, thick description and lived experience over contrived experimental studies. But, the Scientific Method and quantitative analysis have always trumped “the truth before us.” Which brings us back to hegemony and the power of science to disempower.
The challenge, once a lie is deconstructed, is what truth, with a little “t,” do we create? And how then do we hold on to it?
I really appreciate your thoughtful and ongoing commitment to challenging long-held cultural, scientific, linguistic and other assumptions, including your own.
As long as continue listening deeply and inviting dialogue, we have an opportunity to grow past out of all these ill-fitting, thread bare costumes we keep trying to dress each other up in.
Sera, thank you for speaking truth to power, and, as always, very eloquently and with an eye to the absurd, which might be said of Mr. Pies monologue.
There is a whole field within Sociology devoted to Labeling theory. A whole field within literature devoted to deconstructing language and its power to shape and misshape our reality. Not to mention the massive and ever-present business of marketing, which is all about how you label and sell things.
To dismiss the power of a label, a word, a voice, is to dismiss our humanity. Perhaps that is the greatest breach of “civil liberty” and what makes it possible for all the abuses you mention to follow.
Thank you Tina, and Maxima, for going to such great lengths and with such well-reasoned conviction and commitment to protecting human rights. You are giving voice to thousands and millions who haven’t been heard. I wish us all well in your efforts and the UN’s deliberations.
Thank you for publishing these letters. This is such an important public dialogue and once which needs even more air time as these “bibles” hit physicians’ and clinicians’ desks with resounding thuds – which are, I fear, the sounds of countless hopes and dreams being crushed.
Thanks for sharing your story with courage and self-compassion.
I, too, was really touched by Milt Greek’s presentation, in so many ways. As someone who has studied Buddhist and similar practices, I do believe I understand Milt’s concern that his desire to embrace and celebrate his unique gifts not be mistaken for false pride or egotism. I also sympathize with the Mad Pride movement which, perhaps, has not run its course as self- and other-directed stigma regarding mental health challenges and diversity is still so pervasive. Sometimes the pendulum has to swing wide to correct an imbalance and bring us all to center.
What impresses me about you both, Jen and Milt, is that you have used both your suffering and your gifts, to enrich other’s lives significantly.
We should all hope to live lives this full. Thank you both for sharing your hearts and lives.
Oryx, your perspective is revolutionary in its simplicity. These three approaches we can all do more/better/adopt. As a parent of school aged children, I’m trying. Need to try harder. We all do.
One thing that I loved discovering in children’s school, was the concept of Multiple Intelligences, an educational approach developed by Howard Gardner. It teaches that we all have unique intelligences, strengths, and that is is only by valuing, making room for, and including them all, that a community can be truly smart and healthy. This could be a blueprint, along with other wise views, for community and individual healing and “allophilia” in action.
Parker Palmer is another fantastic resource for developing community inclusion and healing, he has also been a revolutionary thinker in Educational theory and reform, bringing his Quaker principles to bear. His Circles of Trust process is noteworthy for community organizing, support and growth. http://www.couragerenewal.org/about/foundations
Interestingly, Parker Palmer has had his own struggles with debilitating depression.
As a parent of young children, you are in a wonderful place to discover some practices and philosophies that can really empower your three point plan!
Thank you for reminding me of these resources. I’m inspired to look again and see how we can bring them into our family support programs and my own home and community.
I appreciate your work and perspective so much, Oryx. Thank you.
Dear Philip, I appreciate your acknowledgement of the importance of the stories psychiatrists tell their patients. Also the gentle nudges from commenters that what may be most important is how skillfully supporters encourage the human being before them to tell their own story. To unfold it, perhaps by shining new more and less helpful perspectives on the story telling, maybe with a few “writers prompts.”
Ultimately, if psychiatrists, therapists, family, clergy, friends, can compassionately and patiently ask “Tell me your story,” perhaps that is the most important narrative of all.
I think that is what you were implying anyway.
I’d love to also add the concept of ethnography and thick description (Claude Levi-Strauss) which places highest value on those with lived experience,; postmodernism, which really helps explore the nonlinear nature of narratives and, I think, rightly challenges the implication that history follows a linear path or time conventions; and the wisdom of the East which allows us to drop stories when they are not helpful, regardless how how entrenched they seem (historically, generationally, culturally).
So many rich things to consider when we look at life as stories we tell ourselves and each other.
Dear Jacqui, thank you so much for speaking out and sharing alternatives that could have/could yet help Jani’s family. From what I can gather from their Foundation’s FB site, they are not in a place now to consider these options. Hopefully, one day soon, and perhaps with some very good trauma therapy as this situation has no doubt been traumatic for everyone in the family. From the sound of it, deeply traumatic.
Would it be possible to repost these 10 tips on our http://www.MotherBearcan.org website and FB page. We are very supporting of the Hearing Voices movement and would very much l like to share these insights with our families.
I am a bit saddened reading what feels like personal attacks in the comments. There is such potential for “survivors” and those with lived experience to help parents, family members and friends empower their loved ones and heal the whole relational dynamic. But we can’t do it by shaming and attacking. Nothing good comes from that place. Just more broken-heartedness.
Jacqui, I do appreciate the compassionate way you spoke your truth as a voice hearer and also as a parent. Thank you for building a bridge for us all to join you…
I am very grateful for ISEPP’s leadership and careful scrutiny of the concerns surrounding our overemphasis and over-reliance on medications, particularly with regard long-term use and use in vulnerable populations such as the elderly and children.
It is perplexing why known and FDA listed side effects of aggression, suicidality, among many others, are not part of the current national discussion on violence.
I hope ISEPP’S’s, PsychRights and others’ voices find a place this table.
Dear Sera, thank you for this insightful post. It reminds me of something my favorite professor used to tell students in our intro to Sociology classes. To understand human nature and culture you always need to start with one basic question, “Why is that?”
Questioning our assumptions, filters, language and labels is a gateway to freedom. I think we should be cautious and resistant to all labels, even seemingly positive or culturally valued ones. And especially ones used to disempower and marginalize. All labels ultimately segregate us from others and from other aspects of ourselves. Making artificially concrete that which is fluid and ever changing if we don’t cling (and even when we do).
Your blog reminds me of a passage from Richard Bach’s “Illusions,” which I’ll paraphrase as best as I can recall
“To define the Truth is to Limit it.” (or perhaps it was to destroy it).
Thank you for questioning the many illusions in mental health, and encouraging us to drop all labels in favor of our shared humanity. We could even take it a step further, we are more than human beings, we are divine. And that birthright connects us with all life human and not, sentient and not. *Stardust* as someone so beautifully pointed out.
I am grateful to know you are safeguarding all of our human rights.
Dear Michael,
Thank you for carrying and holding so tenderly and safely this vision (and reality!) of compassionate care for so many years — from your own experience with your loving grandmother during your own extreme process of “coming to be in this world” through supporting others in this process through I-Ward, through 30+ years of trying to infuse this support within the institutionalized walls of public mental health care…
I would suggest that Dick Price’s vision (and those his vision has and continues to attract) has more than lived on, it is growing. As all those who gather here continue to demonstrate.
Grateful to be reminded of this important work and its potential.
And thank you, always, for including families in your work and vision… We need healing and can be healers too. You are deeply appreciated Papa Bear!
Jen
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“Can … we claim that our society can and must also be a constant source of an opposite kind of ceremony that we pursue doing status elevation ceremonies, identity valuation ceremonies?”
Michael, this is a wonderful question! I would love to see what that could/would look like! We do have institutions like marriage (now more open in many states), promotions, rights of passage like graduation ceremonies, but I’m curious what a “coming through the dark night of the soul” identity valuation ceremony might look like?
And, since that can be a constantly evolving process, when where and how do we celebrate it?
Thank you for inspiring me to think about a new kind of ceremony. I love Goffman and take seriously the impact of labeling, but love the invitation to co-opt labeling for good!
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Faith, thank you for sharing this beautiful blog about some very ugly challenges we face as a community. I also appreciate your thoughts on how we can befriend ourselves. That is so important as there are many times when that is all we have, if only in the moment. Practicing this is so vital, because life can be so fragile, as the loss of your community member shows. That moment can hold great import if we don’t show up for ourselves.
I have found that mindfulness exercise of “what would a friend say/do” to be so helpful. Often, it is something very simple. Like “love yourself more.” Take a bath. Have a cup of tea. Lay in the sunshine. Friends can indeed be ephemeral and shapeshifting, showing up in our moments of need if we can pause long enough to recognize them.
You have been one of those friends, many times, for me and, I’m sure for the person who is no longer with us. I hope you can take comfort in knowing that.
Thank you, Faith, for your spirit and heart.
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mjk, just wanted to reach out an acknowledge your pain and the tremendous amount of strength and courage you are having to draw on in these moments. Your life does matter. I have appreciated all your insights on so many blogs.
I will say a metta prayer for you that you find freedom from suffering in life-giving ways if possible. We all deserve freedom from suffering, and friends to help us hold our suffering when we are having a hard time bearing it. I hope you can find both. You are worthy of love and support.
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Thank you for your thoughtful post, Sandra.
Dr. Nasrallah’s editorial and your blog seem oddly prescient given the recent NY Times article on involuntary outpatient treatment which enables the government to mandate ongoing medication with these “neurotoxic” medications.
Oddly prescient because the NY Times didn’t mention Dr. Nasrallah’s editorial at all.
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Institutional efficiency aside, I do want to recognize the many caring professionals, like you Michael and many bloggers here on MIA, who have always led with their heart regardless of the systems they have found themselves in. The human spirit is hard to crush. Thank goodness!
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Papa Bear,
Thank you for reminding us there are many humane, loving and respectful ways to support someone experiencing extreme distress. Ways that preserve human rights and dignity and safety for self and community.
Unfortunately these approaches take time and heart, which is perhaps why we find them seldom used in institutional approaches. Not terribly efficient in the short run. I suspect much more cost effective (and I do mean cost in every sense of the word) in the long run. Hard to measure in the aggregate, must be measured one person and one moment at a time.
It is also notable that the UN Study on Human Rights was not mentioned in the article. This issue is much more nuanced and controversial than the article would lead us to believe…
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David,
Thank you for sharing your insights and your sources of inspiration and understanding. I always appreciate your family systems “lens” whenever the causes of emotional distress are explored on this MIA blog forum.
What really strikes me is your emphasis on the necessity of movement to create spaces for healing. It is certainly necessary for individuation this movement from family of origin to family of choice or creation. No doubt that even the healthiest of families may have a hard time letting go to let grow – all the more so when someone is perceived as “too vulnerable” (which is certainly subjective).
I think, if we acknowledge that suffering is experienced in relationships, we have to make room for (and even encourage) safe movement away for healing. And that may not lead to movement back or re-establishing relationships within our families of origin. And maybe it can lead back sometimes too.
But where that path leads, away or to, should be led by the healer (the self-healer), don’t you think?
Another thing your reply reminds me of is how we tend to “water the seeds of suffering” from one generation to the next. I’m mixing Buddhist and Native American metaphors here, but I love the idea that we can break this chain of suffering for many generations, moving both forward and backward in time, through our own healing. That alone. By attending to ourselves with infinite compassion and making different choices than the patterns handed down to us. And that may lead us to join a diverse healing community or it may not. I think that’s okay. And, in the end, it doesn’t matter what I think anyway!
Thank you for sharing, David. I always take away something new from your words…
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Bob,
I want to thank you for continuing to bring evidence to the table for us to consider what really supports healing from extreme distress. I hope this new data and mounting evidence base do transform standards of care (for those who can access that care, another big issue) that improve mental health outcomes.
I also want to thank all of those on this site and elsewhere who continue to put “anecdotal” real-life evidence on the table for us to consider. There are an almost infinite number of ways to heal from distress, trauma, abuse, illness, grief… the vicissitudes life seems to throw us all in some measure.
I appreciate Maria’s injunction to consider that Soteria and Open Dialogue may not be gold standard either if we don’t take the time to consider each person’s unique circumstance. To listen for what may be needed. To look under a variety of stones, and not all of them in the mental health garden.
As always, something magical happens on this forum when so many perspectives are given voice.
Thank you all for stretching my limits of understanding in the service of healing.
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Thank you for sharing Duane. I have really learned a lot from this vigorous exchange and appreciate everyone’s honesty and courage.
Kathy, I appreciate your willingness to question long-held beliefs and what sounds like your willingness to support your son in taking the lead in his recovery choices. As a fellow mom, I know that can be scary territory.
Good luck to you both in your family recovery journey!
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Alex, thank you for sharing your film and a bit more about your healing journey.
I think we often forget that healing can come from so many places. And being or feeling like a career patient can really get in the way of healing and personal empowerment. Aligning with our heart and purpose, speaking our truth, standing in our power, finding and sharing our gifts, trusting our emotional guidance system, learning to set healthy boundaries… these are the qualities of a life well lived, aren’t they?
We are moving way beyond the concept of mental health recovery to real transformation and being-ness. Another reason it is so important to move beyond labels, we are all so much bigger than any of them!
Thank you again for expanding the dialogue and sharing from your Self.
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Alix,
Your story is heartbreaking. I wish it were more uncommon. The fabric of our families is so easily torn when any thread begins to unravel. We are all so interconnected, aren’t we? Recovery (or healing or individuating or… whatever word comes closest) can be challenging enough when we are looking at just ourselves. When we look at the whole family, it can unfold so differently for each family member. The problem is, as you point out, there aren’t enough people looking at and supporting the whole family. Or even including them when it might be helpful.
In our class, we have a recovery mapping exercise that is designed to show how everyone in a family moves at their own pace, sometimes in different directions, and with different (and many of the same) needs.
You are so wise to recognize that together or apart, everyone has to work on their own healing. I hope your family continues to move from half-ways to whole ways healing.
It sounds like you have been courageous and strong. I hope you are giving yourself as much compassion and care as you can. Do you and your family have any supports outside the mental health system?
Sending well wishes for everyone in your family.
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Alex, I have been cutting and pasting your comments to respond to and realized it’s pretty futile. I would need to simply repost your post in its entirety. You have captured so beautifully our hope and understanding of how suffering can be shared in families and how it can be healed in family communities.
I want to carefully acknowledge the existence of both blatant and insidious abuse in families and also the unhelpful perpetuation of suffering that cannot be traced so easily. As family members, we hand it down, unwittingly, from generation to generation along with all of the love and other gifts of our ancestors. I think most families fall into the latter category (well, perhaps all do, and the gross abuses represent one end of a very broad spectrum).
I can’t resist quoting a few of your words below as they are still reverberating in my heart.
I believe that once we heal ourselves from the negatively skewed self-images that family abuse ignites within us, then our roles in the family shift from family victim to family healer/teacher.
It took a lot of patience on my part–with which I didn’t always connect, but to which I always eventually came back–and knowing when to engage and when to allow them space for their own process. But over the years, I learned how to navigate this with my heart…without sacrificing my own voice and process.
I learned that our individual healing can serve to spiral outward, like a radio signal, if we keep the fire of hope alive, even when it looks a pretty tenuous.
Alex, would you be willing to share your family’s story as a blog on our MotherBearCan.org website? I think it would be deeply healing for families to hear and it is important for us to share this perspective. If this resonates with you, please email me at [email protected] and we can talk more about how you might like to share.
With gratitude, Jen
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Morias,
Thank you for sharing more about the Truth and Reconciliation project, from which Justice Circles (here in the US and elsewhere) have also sprung. For any of these approaches to work, there does have to be a willingness for consideration of harm inflicted (intentionally or not) and a willingness to ask for forgiveness. There also has to be a great deal of safety built into the process, most especially for those who have been most harmed. And, I think, some period of time for personal healing to take root before venturing into this vulnerable and potentially re-traumatizing process.
Our online classes and in-person family support groups (currently being piloted) are strictly voluntary. No one is turned away nor coerced to come. So far, intact families who have joined either setting do have open, supportive relationships. In families with parents and children, when harm has come from treatment, and parents have been part of deciding on that treatment, they are painfully aware and grieving that their best efforts and/or trust in providers has led to additional harm. Another layer of trauma and shame.
Our organization is trying hard to offer families alternatives that so many have worked tirelessly to create.
What more often happens currently is that we serve families looking for better ways to support their relatives. And we have a smaller but vital minority of survivors (unrelated) who are able to offer a perspective of what hurts and what helps that is received so gratefully by overwhelmed family members who have been fumbling, often with little or no help, to figure this out.
In this way, perhaps we are functioning a bit like the Family Constellation or other family systems approaches. Instead of chairs or other symbolic representations of family members, we have living, breathing loving human beings who are all trying to find their way to healing.
There is no doubt that this is an ongoing experiment and only works when we all hold the highest regard for each other and our mutual well-being.
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Emily, I can’t thank you enough for your presence and participation in our class. You were a constant source of inspiration for me, personally. Given the class discussion, I know I am not alone in this feeling of gratitude. You brought a lot of wisdom to our class.
I also wanted to share how much I resonate with being surprised by what I learned. Even though I’ve worked closely with this curriculum over the past year, I found myself continually marveling at new insights and approaches shared by class participants —family members and survivors alike. This truly is a shared and living journey, and we’ve all got a lot to learn and give.
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CatNight, thank you for bringing this intergenerational dynamic into the discussion. How precious it is for your family to have your own experience and choices to learn from but also your respect for their right to make different choices. That is a profoundly healing space you are holding… And in the midst of it all, you ask for support and community for your children who witnessed your messy recovery/life journey (honestly, aren’t they all?)…
Your children would find welcome reception for their personal choices (and understanding yours) and their experiences in our classes and Mother Bear community. We, as a human race, seem to be very good at intergenerational trauma. Rather than a source of blame, I find this a great wellspring of compassion.
I once heard Vietnamese Zen monk Thich Nhat Hanh say that we all “water the seeds of suffering,” just as those who came before us, but that we can also choose to “water the seeds of happiness.” Something about that gave me great compassion for the mistakes made by my family and my own re-watering of these mistakes — but with recognition comes the possibility of making new choices.
It sounds to me like you have made choices that support your healing and that you are offering this same gift of choice to your children. This sounds simple, but as a parent myself, I recognize how courageous and loving this gift is. Thank you for sharing.
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A humble and profound echo of gratitude for this MIA community and those who birthed it and who are working tirelessly to keep it going and vital. Bob, Kermit, Matthew—and every other beautiful, impassioned voice on here… Blessings.
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David, I would be happy to do so. I will email you with on Monday more details. It is my understanding that NAMI chapters do not have latitude to change their curriculum. It must be presented “as is” and read verbatim (the Facilitator Guide is scripted).
Thank you for considering our program!
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Chrys, I wholeheartedy agree that we should all have the right to define who we are and to reject disempowering, stigmatizing and marginalizing labels. Thank you for stating that clearly.
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HI David, they do have a Jani’s Foundation FB page, but if you visit it, I think you’ll find “dialogue” is in very short supply. There is a lot of pain and angry attacks expressed on the site. Very sad situation. As my grandaddy would say, “If I was a praying person, I’d pray on this one!”
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Joanna, thank you for your lovely light. Honestly, there is so much wisdom being shared it would be hard not to honor it. It would certainly be a shame not to. A big part of my own healing and growth has been realizing I don’t know it all or even a fraction of it all. I’m grateful for the opportunity to learn from others. Thank you for your gift of appreciation. I’d like to give mine to you as well.
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Sarah, with full appreciation for Joanna’s concern below, our hope with our organization and classes is that we do see that day. I’m not sure any of us is immune from trauma, fear, depression, dark nights of the soul, intentional and unintentional abuse.
Which is not to excuse or ignore our moral imperative to correct institutional abuse and neglect, where ever we find it (inside mental health systems or in any realm of human experience).
Healing seems to happen in those places where we share our vulnerabilities as humans.
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Joanna, I always appreciate your voice and wouldn’t qualify it as a rant 😉 Jam packed with observations, critical questions and concerns, to be sure!
I hear you about the word “recovery”. Last fall I was honored to be in a discussion with many survivors (I realized I was more of one than I’d thought), and we acknowledged that pretty much any word we could use for crisis, healing, altered states, etc. etc. could be co-opted. Language is a label. It is imperfect. And it can and is misused to create or maintain power differentials. Deconstructionists like Foulcault, Derrida and others make these points very well.
Not surprisingly, after a week of looking at this, we weren’t able to come up with any good solutions or alternatives. Other than some kind of Nike “just do/be it” (whatever that is) in the moment. Just show up. For life.
But we seem pretty attached to our labels (whether we think they are helpful or harmful).
Another point you raise, which is incredibly important, I believe, is that the “recovery (success) story” can be a real trap and cause additional suffering.
Life is messy, nonlinear, hellish, joyous, maddening, sane, profound, meaningless. And that can all be before lunchtime! We say “that’s life” when we talk about those who don’t have psychiatric labels. We say, “that’s relapse!” when we talk about those who have been labeled or identified as having mental health challenges.
There is so much more in your reply, but I want to stop here because I have been really impacted by your observation. Thank you…
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Chrys, Thank you so much. It sounds like you come from a long line of strong and devoted mothers. (certainly mother bears!).
I really love your beautifully worded observation about the need for mental health care providers to get alongside, support and keep families together.
I don’t think enough attention is given to the loss of parental rights that can occur with psychiatric labeling. As a generation of those labeled and parenting is now burgeoning, this is a critical issue. And a human rights one, as I know you are keenly aware.
Thank you for all the work you do to advocate for human rights, healing and diversity!
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Rossa, thanks for making this important distinction. I think it can be helpful for family members to have the opportunity to practice new recovery skills and explore their own emotional needs without necessarily doing so as a whole family.
Recovery seems to be a dance of doing our own personal work, on our own, allowing family members to do the same in their own time and at their own pace (and in their own way), and then coming together and trying to make our relationships more supportive.
It was lovely, however, to see the wisdom, compassion and strength the survivor perspective brought to this family exploration…
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Dear cannotsay,
I honor your answer. At the very core of it all, I believe how healing unfolds should be determined by the person whose process it is. Personal choice, self-determination, safety, personal empowerment are all so vital. At least they have been in my life and so many recovery stories I read. If these basic human needs are not available and supported in one’s family or origin or choice, then healing may not be possible together. But perhaps the concept of family or tribe is still important? Creating a community that can support these qualities?
That is what we are trying to do here in our online education and through Mother Bear. Create healing communities.
And perhaps families can learn and heal from other families’ survivors and vice versa. That seems to be what is happening in our classes.
Individual healing is always the starting point though. Together or apart. Thank you for sharing. It sounds like you know what supports your wellness and you are honoring it!
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Francesca, you raise very valid concerns. As I mentioned in the reply above, that is the case in our classes too. We have a lot of new family combinations where family members can learn from each other across families.
The families we are seeing in our classes may have initially bought into the biochemical theory (the promise of a quick fix is awfully tempting to parents whose guts are being ripped out watching someone they love in pain). But there are no quick fixes, esp. if mental “illness” is not primarily or simply an illness in isolation, but a complex web of relationships and responses to circumstances.
If the biochemical theory were able to offer good, lasting healthy solutions I don’t think our collective state of mental health would be where it is today.
We also have many (most) families who come to us quite hopeless after hearing “my family member is fundamentally flawed” and “can never fully recover.” That is a real hope stealer for everyone involved.
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mjk,
You raise such an important point about the quality and impact of our relationships. In my opinion, this not a mental health question it is an essential human and universal question. But then, that’s precisely what does make it a mental health question!
Our whole course is essentially geared to this question of how can we make our relationships healthy? How do we set healthy, strong, respectful boundaries when they aren’t? We spend a whole week practicing Marshall Rosenberg’s NonViolent Communication skills (or Compassionate Communication as it is also called). Really, this approach takes a lifetime and is, unfortunately, quite new to most of us.
That clarity you refer to is achieved in the NVC approach by learning how to clearly articulate needs, (usually by recognizing feelings as they arise and then exploring possible needs), and to make requests based on those needs, with an expectation of mutuality and desire for both parties to get their essential human needs met.
When and if that can’t occur, boundaries may need to be established. I guess this is a diagnostic process of sorts, but it feels more like an inquiry and is self-focused and not applied to the other person.
There are certainly times when healthy boundaries require people leaving harmful relationships. I don’t suppose our divorce rates would be so high if that weren’t the case. And the natural pattern of children growing up and creating their own families also indicates a natural “moving away” process to some degree.
Thank you mjk, for your important observations. I want to really honor and reaffirm that healing in families may need to happen apart. In our classes, the family members and roles are across the board, but often, it is a mom learning from another family’s daughter, a sister learning from another family’s sister, etc. We are creating new families and practicing trying on other’s perspectives in a safe way…
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Duane, I’m wondering if you would set up an automatic email so I can be reminded of this beautiful quote every week!
I think I’ve told you this before, but you are every bit a Papa Bear and we are deeply grateful for the space you have held for so many for so long. Really grateful you are active on Mad In America!
Jennifer
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Jonah,
Thank you for raising these important questions regarding recovery. We are well aware of and support those who do not feel recovery is an appropriate word to describe moving through emotional crisis, distress, and/or unbearable circumstances and life’s many double-binds. Back in the fall we devoted a whole blog to this “recovery” dilemma by exploring “what are we recovering from?”
Often transformation, healing and growth seem more appropriate. But we respect the rights of anyone for whom “recovery” is a helpful concept (however they choose to define it for themselves).
In our family mental health education, we ask participants to explore what people may be “recovering” from and we include psychiatric labeling, disempowerment, loss of status and important roles, friends, treatment side effects, stigma. This exploration can be a real eye-opener. On the other hand, many the family members/supporters in our class feel the same way and are grieving that their relative did not receive the compassionate care they had hoped for when they started down the road of trying to relieve suffering. The whole family, in different ways, often grapples with a sense of betrayal, loss of voice, hopelessness.
We spend a lot of time speaking about alternatives, new ways of supporting each other, and also acknowledging there aren’t enough good alternatives right now when the family system is overwhelmed and when individuals need other supports (than family members) to help them become empowered and independent.
We don’t use psychiatric labels in our lessons. We recognize that most families arrive with one or more of them, but we focus on moving beyond labels and focusing on strengths and possibilities. We also look at mental health as a continuum along which we all travel, not discrete categories like pigeon holes or pot holes that we fall into and can never climb out.
And while we share a new paradigm for understanding emotional crisis and distress, what has been most inspiring, for me, is to see the wisdom and compassion that arises within and between our families and class participants. They bring as much to the course as anything we could bring.
I guess, in the end, our job is to create a hopeful, supportive and empowering space to figure out life’s challenges. And not to be afraid of pain, confusion, and mistakes. We are all learning how to be human…
Thank you, Jonah, for your support and encouragement. You truly are a survivor with so much healing to offer.
With gratitude,
Jennifer
p.s. here’s a link to the blog I referenced earlier…. http://www.madinamerica.com/2012/10/what-are-we-recovering-from-making-a-case-for-recovery/
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Thank you Steve. I always appreciate your perspective on so many of the blogs on Mad In America.
As for the real source of institutional change, I couldn’t agree with you more! “We” really are the change, aren’t we? Institutions, as constructs, tend to favor the status quo (from a purely functional viewpoint). I think we humans, on the other hand, are the real change agents. As long as we stick close to and honor what makes us vital and human. And, as you note, hopeful!
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Thank you mad mom. We do still have a warm line, on Tuesdays and Thursdays (our hours are listed at http://www.motherbearcan.org). We’re finishing up our warm line training so we can expand our hours and days. Our staff is going to take Emotional-CPR training this fall and we’re excited to share this support with families. Our Hope Line, by the way, is open to “families” in the same way our education is- available to anyone in distress or in need of recovery resources, encouragement or just a compassionate listener.
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Hi Rossa, Monica and Duane (who I always appreciate seeing on these blogs!), I would like to express my resonance with everyone’s mixed, hopeful, cautious and concerned responses.
While I’m certainly biased in that we’d love to see more NAMI families join Mother Bear, so Duane’s suggestion above sounds lovely and very unencumbered by past missteps, harms and questionable alliances, I also appreciate Robert Whitaker’s statement that we all share the purpose of wanting the best for those we love. It’s just how we go about doing that and is it the best? As I parent, I know I don’t always know the answer to that. When we don’t know these answers at the organizational level, and push for policies, perhaps the ramifications when we are misguided are writ large.
I do want to share that this blog’s author Claire, is a remarkable woman who is working for change not only in her current position at our local NAMI chapter, but in so many areas of reform. She is a peer, a wellness advocate, a brilliant young woman, and has a big healing vision.
We’re very glad that she is involved in the local NAM where Mother Bear is headquartered as it makes reaching out to like-minded families much easier.
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Sera, I always appreciate your blogs and insights. This is a tricky dance and, I imagine, much easier to do with your shoes off sometimes. Which does, of course, risk getting your toes stepped on a lot more!
I’m grateful for all the work Western Mass RLC has and continues to accomplish. Definitely a beacon of hope for many. Thank you for showing up and moving bravely forward, day after day.
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Hi Richard,
I appreciate you challenging/questioning all of us regarding our willingness to engage in concerted “on the ground” efforts to reform/reframe/revision the current mental health care paradigm in real and meaningful ways.
I thought it worth mentioning that Sandra serves on the Board of the Foundation for Excellence in Mental Health Care and is also training in the Open Dialogue model.
There are many on MIA who are taking action to transform mental health care. I would definitely count Dr. Steingard among them. And you.
Very grateful for you both! Jen
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Dear Laura,
Thank you for all the hard work you devoted to bringing this resource to life. I am excited to be able to share it with individuals and families through Mother Bear and other networks.
Thanks also for your reminder that there are many pathways to healing, including tapering. Though I think it is extremely helpful to have a strong support network during this process, because medication and tapering side effects can be so powerful (and unanticipated), I appreciate your reminder that many different kinds of people can be supportive through this process. No one gateway.
Jennifer
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“Then we might agree to approach each other with genuine curiosity and humanness, values through which the opportunity for growth and understanding can exist.”
Thank you Sean. Reminds me of one of my favorite Rumi quotes,
Out beyond ideas of wrongdoing and rightdoing,
there is a field. I’ll meet you there.
When the soul lies down in that grass,
the world is too full to talk about.
Ideas, language, even the phrase “each other” doesn’t make any sense.
Thank you for approaching this divide with courage, vulnerability and, yes, curiosity. I think it is so easy to get stuck in chasm created by institutional “efficiency” that does not make much room for humanness in any gear in the cog.
Easier to vilify or dehumanize each other, rather than trying to reach a hand across and invite the soul to emerge in a safe space where “each other” doesn’t make any sense… That is the space where healing can happen. But lord knows, it takes hard work and patience to create it in the gaps and cracks. And too many never find it.
It can be all too easy to give up, when we start out disenfranchised and disempowered, but I am encouraged by those historic moments in which beautiful souls like Rosa Parks stand up in defense of humanity despite insurmountable odds.
We never know when we are in such a moment. But we can certainly increase our odds by standing up more often.
With much gratitude for your time traveling and bridge building and surviving,
Jen
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You are a good mom!
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Sera,
Once again, I am humbled by your fearless honesty and your ability to not only navigate your pain, but to transcend it with insight and compassion and a deep understanding of the universal nature of this pain.
I have not met many people in my lifetime, including “sages,” who have this capacity, and it begs the question about who really is mentally healthy in this world (or perhaps, who is awake and honest).
I want to echo many who have shared how “normal”/common these feelings are , and also acknowledge the pervasive fear and potentially disastrous consequences of admitting these fears to the wrong people and in the wrong setting. The history and origins of much psychiatric abuse, isn’t it?
I can remember my grandmother saying to me before my daughter was born, “If you feel like locking your child in the refrigerator, that is normal. If you actually do it, that isn’t.” She was not exactly the paragon of motherhood, but that piece of advice has been more comforting than I would have guessed.
I experienced those fleeting feelings myself. And I heard other mom’s share them in La Leche League groups. Your blog reminds me how the same things that make us unwell at any stage of life—isolation, fear, judgment—are things very present for new parents. We need to build more safe communities where we can share openly and without fear.
Thank you for your willingness to speak truth to healing once again…
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Cathy, thank you for adding another important layer to this discussion. I hear you, and know first hand, how debilitating a full-blown panic attack can be (and prolonged fight-or-flight anxiety).
I can’t remember where I first heard this phrase, “Something that is perceived as real is real in its impacts.” Perception is everything isn’t it? And, I think it is so important to start with the perception of someone who is suffering and acknowledging their very real pain. As I write this, as a mom, I know I am guilty of overlooking this. I’m making a silent vow to do better…
Thank you, thank you, for giving voice to this need we all have. To be validated in our pain (and celebrated in our joy and all the rest of the human experience).
I’m not sure this has gotten as much attention in this thread, but one challenge with CBT could be that when we are in survival mode, our thinking mind can shut off. What may be most helpful is to work on the traumatic feelings coming up in the present moment.
I hesitate to use the word “non rational” response, because when our body is is fight, flight, freeze or collapse, any number of extreme choices may “feel” entirely appropriate to our internal survival system (even anti-survival).
I believe Nijinksy mentioned earlier that gentler approaches may help lead us to a more hopeful set of choices and responses. Perhaps mindful breathing with a friend or reaching out, with permission, to offer a steadying hand, could help us move out of fearful or despairing reactivity and into a more grounded place where truer/more choice(s) can be possible.
We have to feel safe first.
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Hi all, earlier in the blog responses an interesting discussion has been bubbling about choice and when it is informed, free, and restricted. One issue that came up, among many, is psychiatric medications and their impacts and influence on suicidal feelings/impulses/actions.
I mentioned that there is little information on the enhanced risk of suicidality with the medication “cocktails” that are frequently involved in those experiencing emotional distress.
I would like to offer one of the few resources I know that can help decipher those risks, Dr. David Healy’s Rxisk.org website. There is a link at the bottom of every MIA page, including on this blog page. There is a way to check side effect risks with multiple medications.
Of course, Rxisk.org focuses only to the medication risks (which are by no means insignificant).
Logic and intuition would encourage consideration of the manyfold factors that, in combination with medications, can limit rational choice-making around suicide (for more on the idea of “freely chosen” suicide, please review the comments above).
I would also like to encourage followers of this blog to at least skim through the comments (they are worthy of a full read, as many have contributed greatly to this discussion).
There have been a number of resources regarding suicide awareness, support, causality, rights, and more that have been shared throughout the comments section that you may wish to explore further.
We will try to incorporate many of them on our Mother Bear website, http://www.motherbearcan.org, in our resources section.
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Amen, Joanna! We do need to address the roots of systemic abuse and neglect until we are all liberated. Every last one of us.
There is another teaching that I resonate with in Buddhism, the Bodhisattva’s promise to return to this world again and again until all beings are relieved of suffering.
I believe this concept is a part of every wisdom tradition and I feel it coursing through your veins. I am grateful for your warrior spirit!
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aek, thank you for this link. It sounds like a rich set resources.
It is seems so painfully obvious, as in your dog training example, that the only effective and “sane” responses to expressions of suicidal feelings and attempts are love, compassion, unconditional acceptance and support finding life-giving options.
Honestly, does it take a PhD, an MD, and LCSW or an ER tech to figure this out? Does it take a whole branch of Sociology? Does it take death after death after death…?
Apparently so, to our disgrace.
Thank you for joining and enriching our conversation!
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Joanna, I will look at ssnerch’s comments and Richard’s blog. Have been wanting to read more thoroughly.
I am so glad you feel heard. What you are trying to say is important!
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Dear Joanna and Jonah,
I want to offer support for what you are both saying. It seems to me that you actually are not so far apart, but that words are getting in the way of feeling that.
You both have been so helpful in deepening my understanding around this topic. I hope that comes through with the sincerity that I feel.
And Joanna, I had not seen your comment about catatrosphizing feeling pathologizing before I used that word choice in a response above.
I can’t speak for Jonah (who does a much better job of speaking for himself ;-), but I can explain that what I mean by that term, based on my own experience of terror, is a feeling that the world is coming down around me, that my very survival is threatened at a basic level, that extinction seems a very real possibility (and not by my hand). It involves a somewhat involuntary (or at least irresistible pull) to play out any number of “what if” scenarios, none of which end well. And, interestingly, the ability to stack multifold disaster scenarios to “cover my bases.” If one disaster doesn’t pan out, then surely the next one will.
The whole cognitive therapy behavioral approach, which does not have to be an approach or a therapist, simply a good friend or trusted advisor, is to untangle the “what if” knots, get out of the future, and breathe into and live in the present. It is all we have to work with anyway. I have found the only real choices I have are available in this present moment.
This may or may not be what Jonah was trying to convey in the situation specific to homelessness, but I’d like to share a particular scenario that played out in the height (or depth) of my grief and accompanying anxiety. I would definitely call this a catastrophizing scenario as that rings true to my experience.
Shortly after my grandmother died, I became convinced that I was going to lose all sources of income and ability to support myself.
I did not lose my grandmother (who was my first mother), until I was nearly 40 years old, and it was my first intimate experience of death (a blessing and a curse I guess, not a lot of practice).
My grandmother had occupied a large continent in my “the world is a safe place” cognitive map. With her death, there was a giant gaping hole in my world view.
Looking back, I can see that in losing her, I also lost my safe footing in this world (I hadn’t done the work of providing safe footing for myself, content to let her hold that for me). In my grief, I conflated my income and my home with the safety I was desperately looking for outside myself (where it had never been, even in my dear grandmother’s arms).
So, I would replay various scenarios of losing my livelihood, my house, my family, etc. There were many creative but disturbing ways that played out. I worked long and hard with a CBT practitioner to recognize how “unlikely” many of these scenarios were, however, the most helpful question, in the end, was this (and I’m not sure who asked it):
“Let’s assume you do lose everything, what now?”
The question I feared most, when asked out loud, was actually liberating. My mind was able to come up with lots of options and choices.
Okay, well, I know there is a shelter on such and such street. Oh, yes, well, there is a women’s shelter that takes children too. I could get a minimum wage job. No one wants those. If I got one in food service, I might get some food as well. Well, there is Section 8 housing. And Homeward Bound. Maybe I’d qualify for services. Maybe I could help others in the shelter. Do some empowerment circles.
Honestly, the creativity that question unleashed was shocking. All the sudden there were lots of options and choices. None of them what I would prefer, but, given a new reality, I could see that I could create new opportunities in the chaos. That was actually very empowering. And, because our system in the US stinks too, I used all those “what if’s” to create back up plans. Pretty good ones, I might add. Shelters gave way to living in tents in friends’ back yards. Looking for house sitting opportunities. etc.
None of this is shared to diminish the real pain, hopelessness and despair of losing your home, job, family and other traumas. They are traumatic. Deeply so. And no doubt they have led to untold suicides. Here in the US, during the Great Depression, many literally lept to their death after the stock market crashed.
But, perhaps, all hope is not lost when we lose these material things. And maybe we can share that with our friends (and a place to sleep and something to eat) if and when the unthinkable happens.
Which is not to say that we should not fight, tooth and nail, to provide stable housing, food and compassionate care for all of our citizens.
There is a Buddhist saying I once heard,
“We cannot build our happiness on the suffering of another.”
I believe this to be true.
Thank you, Joanna, for living and advocating for our collective happiness.
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Oh Nijinsky,
Your story has pierced my heart. Again. This. has. got. to. stop.
Even if we have the grace to acknowledge that perhaps all of these harms are done with the best of intentions, that systems and bureaucracies don’t need evil intention to commit evil, we are all complicit in crimes against humanity as long as we don’t speak up and out against them.
It sounds like your words have been strong and tireless but have fell on deaf ears. For your dear friend, I am so sorry that your words were not heard in time to save her life.
Perhaps it is some comfort that your precious friend heard them? Even in her time of intense suffering, to have you validate her life and rights? I hope so, Nijinsky. I do believe our words and hearts have the ability to heal beyond this lifetime. I hope I am right.
I am also glad you honored your boundaries. You are not the only one who has been in this exquisitely painful situation of foreseeing an outcome that you feel powerless to change, and trying to change it anyway. And having to say goodbye too soon. Unfortunately, so many on this website share this story. Too many.
Thank you for telling your friend’s story here. It is welcome. And heard.
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I wonder what would happen if you did scream that out? I should like to be there Joanne, with a candle (that might get me thrown off the line, eh?)
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I also want to acknowledge the inherent challenges in knowing when choice is truly choice.
As you and many others have shared, involuntary treatment, hospitalization and various forms of institutional neglect and abuse can engender and intensify suicidal feelings and desires and lead to completed acts. Under these circumstances, we may still be looking at a choice, but I would argue it is a forced one created by choices made on behalf of someone in distress that severely limits other choices.
So many of our psychiatric medications carry the risk of suicidality, and we have NO idea how much this risk is intensified in the drug cocktails that are so commonly prescribed to and taken by those in distress. And the suicidality risk that accompanies sudden or rapid withdrawal from psychiatric and other medications, withdrawal choices that are often attempts to reduce other life-diminishing side effects. Talk about a black box warning (that we are not heeding).
Catastrophizing limits our range of choices, sudden displacement from homes and jobs, trauma, abuse, death of a significant other, and other life-changing events may contribute to catastrophizing and limited or faulty choice making.
This issue of choice and free will is so important. Perhaps the best we can do is to always make as many life-giving choices available as possible, to encourage each of us to make our own choices with as much information, support and time as we can muster.
And to do our best, collectively and for the greatest good, to dismantle systems that rob us of our birthright to choose and determine the quality of our lives without robbing others of this same precious right.
I am grateful to be learning from all of you in how to accomplish this important work…
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Dear Jonah,
I most certainly welcome your opinion regarding choice! And what beautiful insights arose from your response. Thank you for being vulnerable and stretching further into this space.
I can see the importance of not stripping the dignity of someone for whom suicide is the most powerful choice they believe they can make. And, as we’ve acknowledged, we seem to be able to hold this respectful stance when we look at end-of-life issues where someone is ravaged by physical disease.
I know I just opened myself up here by bringing the D word in, but I mean only to make the point that we are better able to accept and honor end-of-life choices when we can “see” the pain in the form of some crippling physical deformity and/or severe functional limitation.
Lest we begin celebrating every suicidal act, I appreciate your equally important point that doing nothing, “wei wu wei,” is one of the most powerful ways we can support each other. I would add “wei wu wei *with*” (not sure how you Lao Tzu would say “being with friends of your choice”). Doing nothing when someone is in despair *and* isolation may not improve matters. Though it may still resolve these feelings as time alone can be a wonderful healer. But not always.
Essentially, when I was in my darkest despair, my friend did nothing but be with me. No more, no less. But no leaving. No turning away from my pain. This was and is a life-changing memory.
Thank you for bring what feels like very important medicine to this topic.
It is the very thing that was not given to several beautiful souls who have shared their experiences (or their friends’) here. I can’t imagine how many millions each day fail to receive this loving “doing by not doing” presence.
I am also grateful that you brought up CBT and catastrophizing in your response below.
I am not unfamiliar with this process and the flight-or-flight limbic responses that can accompany it. My grandmother’s death and my subsequent deep grieving process was a crash course in catatstrophizing, in fact.
I worked with a Mindfulness CBT practitioner to learn to recognize and work through this way of responding to overwhelming stress and fear.
Again, having a calm friend during these times was very helpful. Not to argue or contradict my perhaps unrealistic fears and predictions, but to hold a safe space until I can wend my way back from a future I can’t really know or predict without more information (and, even then, not really).
Jonah, you have enriched this discussion, I am grateful for your thoughtful and vocal presence. Jen
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Much more enjoyable traveling with dear friends and fellow warriors 😉
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Dorothy, bless you in yours too. This pain is so very deep. I think it must either break your heart into pieces or break it open. Perhaps the first and then the latter. You and Paris both have taken this pain and used it to heal…
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Dear Nijinsky,
I am grateful for your questions and contributions here (and on so many blogs). I want to highlight a few of your comments for response because I find them so valuable..
A person on the brink of suicide is also highly alarmed and doesn’t need more alarming contributions,
This is incredibly important. And a point I was trying to make, but which may have been missed. Adding fear to fear results in predictable tragedies. As well-intentioned as the first responders were in this local suicide, I can’t imagine a worse response to someone in crisis. I can imagine an emotional seismograph registering mass fear in that situation (amplified by all those who were channeling it).
Similarly, sensational news accounts can and often do make matters worse. When I got my journalism degree, it was common knowledge “if it bleeds, it leads.” No bias there.
For my family’s own mental health, we long ago stopped watching the nightly news and taking the daily paper. I had to give up my daily dose of All Things Considered when the economy tanked.
Points well taken. Our media is biased (on the left and right) if for nothing else, commercial interest and to keep their own viability (as noted by magazines and newspapers folding left and right). Alarm sells. So do advertisers. And the ones taking out the biggest ads are often pharmaceutical companies…
Is it really wise to have the focus on why wasn’t this more in the news, rather than don’t buy into all of this alarm and you will be to relate to the person whose life you are trying to save?
Definitely not. The wildly disparate news coverage on that day was just an interesting (and sad) metaphor about what we will talk about as a society, ad nauseum, and what we won’t.
My concern was that there were so many people in our community who were personally witness to and connected to this tragedy. School children, hundreds of commuters, dozens of first responders and their families, not to mention the family and friends who now have a gaping hole left by this young man’s departure.
The lack of news coverage correlated with a lack of local community support. Everyone was left to “deal with it” (or not) on their own, in silence.
I have the opportunity to work with many local therapists and many were completely unaware that this ever happened.
I can also contrast this with a sudden death that occurred last year. My daughter’s piano teacher and my friend, Paul, died suddenly and unexpectedly. He was in his mid 40s. He ran our local music school. My daughter and I were in shock, and so were many other children and families. The community snapped into action, while there wasn’t a whole ton of press for Paul either, we had bereavement teams at the music school, trauma specialists volunteered their services, counseling centers offered to make sure people had support regardless of ability to pay, meal and visit calendars were created that fed and held Paul’s grieving partner for months.
At his funeral, the large church was filled to overflowing. My daughter and I attended on her birthday (Paul’s strange gift to us). And we celebrated a life well lived and much missed, out in the open, in the light of day.
The profound silence surrounding this suicide (a silence I believe to be common in many communities across the country) robs communities of the chance to grieve and heal together, to celebrate a human life together, to acknowledge every life has meaning, no matter how short, and to look at ways we might better relate to each other in that very personal, safe and compassionate way I think you are advocating.
I’m not sure we can move beyond alarm and fear if we can’t begin talking about death, and life, and suffering more openly without institutional overreaction. I do appreciate your suggestion that media coverage can most certainly be part of this overreaction.
Thank you for expanding the dialogue. Warmly, Jen
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Paris,
Your friend’s story is so incomprehensibly sad. It is as if everything conspired to fail your friend in her greatest time of need. That it left no doubt in your mind what your life’s work would and should be does seem to be her parting gift to you.
That you have hope and resolve in spite of this personal loss inspires me as well. I am imagining you scooping her up, mid-leap, and jumping off a different cliff, this time, with a hang glider and your fearless piloting. Bless you in your work.
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Irene, this is an excellent point. I think ideally we learn to have conversations about overwhelming and hopeless feelings, and good ways to support ourselves and others during those discussions (like breathing, pausing, grounding, resourcing, for those who can do these things).
When someone is at the point that ending their life is what is “up” for them, then gentle languaging like you suggest does sound helpful. It may be that validating the rawness and intensity of these desires may be helpful too. And the normalcy of them.
You are bringing up a good point, if I’m understanding you, about the vicarious trauma that people may experience when they talk about suicidal feelings or acts, especially if the person experiencing them is known to them.
I wonder if much could be learned by looking at cultures where death is a more open topic of discussion and is less encumbered by fear.
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Joanna, I”m not sure about self harm. That is a good question. Whether or not one is admitted to or evaluated in the ER, and how helpful that is, is another good question. As others have shared, this can lead to more trauma. No easy answers here.
Our systems are broken in many ways. Which is why community-based, non-medical care is so attractive to so many reformers. We may need to create the care we need and not wait for lumbering, well-lobbied and misguided bureaucracies to create it for us.
We certainly can’t have too many options.
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Joanna, this is unconscionable. Thank goodness you are there to speak out. Are there any advocacy groups in the UK that are working to redress these issues? Any avenues outside the system for support? I had heard there was a movement to create a healing center there called Chy-Sawel (sp?) but I”m not sure this lifted off the ground.
Does the Hearing Voices Network there do advocacy around these issues?
I would love to hear you have support and a platform for your concerns. It sounds like you are shouting into the wind…
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Steve, thank you for sharing your insights. As a mother of two school-aged children, I couldn’t agree with your recommendations more. In fact, our family mental health organization (Mother Bear: Families for Mental Health) has been going into middle schools to discuss and interact with children around labeling and bullying and the impact of “creating others” on the human spirit. It is not surprising that everyone has felt the sting and weight of a label, and has contributed to and been the victim of bullying. If mental health doesn’t start here, it certainly checks in…
I also appreciate your call to civility. I’m not sure we fully appreciate how much this is tied to our collective wellbeing. I really got a sense of this more deeply after recently completing a workshop with Parker Palmer, a Quaker educator, philosopher and author.
I would like to share five “habits of the heart” that Parker shared are vital for making true democracy possible. They are adapted from his excellent book, “Healing the Heart of Democracy: The Courage to Create a Politics Worthy of the Human Spirit”
I hope you will find them as resonant as I did.
1. An understanding that we are all in this together
2. An appreciation of the value of “otherness”
3. An ability to hold tension in life-giving ways
4. A sense of personal voice and agency
5. A capacity to create community
Interestingly, Parker has himself experienced three bouts with deep depression, which we writes eloquently about in his book, “Let Your Life Speak.”
It is a recognition of our common humanity and the supportive social environment that you advocate for, Steve, that were crucial for his healing among other things.
Thank you for your sharing your wisdom and heart. It has broadened the lens on this topic.
Warmly,
Jen
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I also like the idea of critical mass and tipping points. It is easy to bully or marginalize someone in isolation from their support networks (there does seem to be a parallel here to our system of care), but, en mass, it is harder to ignore humanity’s call.
I’m thinking of that bridge in Selma, Alabama. Perhaps MIA and our alternative networks are similar to the churches in the South. A place to go, be reminded of human rights and our dignity, to become strong in our resolve. But, at some point, we have to walk out of those churches and engage in civil discourse, nonviolent protests, and the courageous heart-to-heart dialogues with those who hold different views.
But we don’t have to do it alone. Thank you, Paris, for taking the first few steps on this particular bridge. See you there!
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Wow Paris! Disciplinary foster home? You are a master of self control and courageous risk taking. I can imagine two of your greatest gifts might have been at great risk of being extinguished had your family chosen to medicate your intensity.
Thank you for this invitation to join the NAMI discussion. I should like to invite them to explore Mother Bear for alternative approaches to understanding mental health challenges, how family members, friends and allies can support them and move toward real transformation and healing.
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Sera, thank you for starting another courageous and important conversation with us and through your own beautiful body (and yes, it is, beautiful, and yes, I get how little my saying it means stacked against a lifetime of culturally approved self loathing).
Yet another thing we share, this journey. You are right, it is all too common. I trekked through years of starvation, binging, a graduate degree devoted to deconstructing the objectification of women, and decades of meditation trying to work this one out. Thought I had in some ways. Not so quick.
It was the gift of two beautiful girls that reminded me how far we have to go. That we ALL have to be liberated from this morbid obsession and fetishism with what is NOT beautiful (how crazy is that?!).
My feminist parenting checklist:
No women’s magazines allowed in house. Check.
(They still look every time we check out at the grocery store)
No discussion of weight in our house. Check.
(“Mom, am I fat?” My underweight 8 year old asks. What the hell?!)
No Barbies. Check.
(My oldest daughter is beginning to look like Skipper.)
No vanity/vacuous TV programming. Check.
(We watch Hulu to avoid the bulk of commercials. Helpful for avoiding pharma ads too.)
And still, I have two girls who are conscious about their weight. I still worry about their body image.
For me, I think I only began to heal a part of my own body politics when an extended bout of anxiety resulted in a dramatic weight loss that surpassed my high school eating disordered days. I was seriously considering the Ensure shakes (so was my family doc).
During this time, I went on a weeklong silent meditation retreat and realized, with my whole frail body, that I didn’t believe, at some core level, that I had the right to take up space.
Breathe. Contract. Breathe. Weep. Breathe. Expand.
This has become a new practice for me. Taking up space. Embodiment (uncomfortable, uncharted territory for someone used to living only in her head).
Do I still feel bad when I look in the mirror? Yes, sometimes. Do I still avoid the camera? (always!). Do I still worry about my girls’ self image? (big time, especially as high school looms near).
But I am committed to taking up more space, and feeling like I have a right to it. That we all have a right to inhabit our bodies and lives. A right to live our lives LARGE.
It’s a long road… I’m grateful to know you are in it with me.
With great affection,
Jen
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Dear Dorothy, thank you for sharing Sean’s wonderful work and for connecting us. I look forward to learning from him and sharing with our local community and also our Mother Bear network of families. Western Mass RLC is such an amazing resource!
Much love to you too, always.
Jen
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Irene, I always treasure your insights! Peter Levine’s Somatic Experiencing work is invaluable, and it was what I had in mind when I made the statement you quoted.
In fact, in our local Family Den support meetings, we are looking at the various ways distress can be understood and defined (or explored). We are looking at trauma as one of the ways to understand distress, and we have invited an SE Practitioner and Trauma Resource Institute master trainer to share practical ways individuals and families can resource and support ourselves in healing our individual and collective distress. Accessing our strengths and safety in community are great ways to do this.
Thank you for sharing this excellent resource.
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Cathy, I am so sorry to hear of the silence surrounding your brother’s death, what sounds like the may have been institutional even if unintentional bullying from the mental health system when you spoke up about being bullied, and the reactions you received when you did have the courage to reach out and share your extreme distress in the women’s shelter, distress which, by the sounds of it, was an understandable response to a very challenging and chaotic time in your life.
I wonder how your healing would have unfolded if you had been met, each step of the way, with the genuine caring and understanding that you were seeking.
I think you are right, It really is that simple. But we need to support each other in giving and receiving this kind of care. And being fearless about it. I think the more of us speak up and out, the more space we create for this kind of heartfelt support and witnessing.
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Thank you Duane! So, which one of us is going to do that survey?!
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I love that Joanna. Thank you, the desert rose.
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I am so grateful to those who have shared their experiences with suicidal feelings and actions in response to this blog. I was hopeful this might be an opportunity for a healing dialogue as well as to share what has been most helpful during these times in our lives.
While I have never tried to commit suicide, nor entertained or developed specific plans to end my life, there have been a few very painful times in my life where I have gone to bed wishing I would never wake up and have awakened for days on end regretting I that had (awakened), with no will to live much less get out of bed.
I can remember how vaguely disconcerting it was to realize I had lost the will to live, which felt decidedly different than the “please just make the pain stop whatever it takes” place I had occupied just prior, a place that although charged with destructive energy, still had some life in it.
I entered this soul-dead place for several months in my late 30s, about 6 months after my grandmother died (and 8 months after my mother-in-law passed on after losing a painful battle with cancer).
I had spent my first year of life with my grandmother, and she had always been my spiritual guide, my living archetype for unconditional love and my number one supporter regardless of what I thought of or did to myself. My grief over her loss was profound; however, since it did not hit me with its full force until 6 months later, it was labeled and treated as depression.
Inappropriately prescribed mood-destabilizing medications, grief, the stress of motherhood and community service landed me in bed, literally, unable and unwilling to get up. My life had become unbearable. And there I lay in the grey half-light, curtains tightly drawn, for several weeks.
Here is what helped during that time when almost nothing helped:
• Friends and family that came by and whisked my girls off on adventures that gave them the chance to access joy and normalcy when it was in short supply at home.
• My husband who let me rest. While it didn’t feel good or healthy at the time and worried many, perhaps, in the end, all that sleep wasn’t all bad either.
• My physician friends who knew what would happen if they took me to the hospital, and so, they didn’t, and made house calls instead.
And, perhaps most importantly, one dear friend who called every day just to check in, who didn’t require me to talk or to listen. Just to answer the phone. The same friend who sat on the edge of my bed on more than one occasion, in my darkened room, who just listened and sat vigil while I cried.
She did not try to tell me life would get better (though it did), or that the pain would recede (though it has waxed and waned), or that time would heal all wounds (though it has certainly helped).
She just sat with me. And had faith in me. And didn’t run away from my pain. Until I could be brave enough not to run away from my pain either.
I wish that kind of friend for us all. And I am grateful for my friends and family who helped hold it safe for me until I was able to hold it again.
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Stephen, I’m so glad you insisted on talking about it! There is no small irony in your situation.
Joanna, it is not uncommon for any therapist or doctor in the US to follow this drill when working with a client who is very depressed and expresses any self harming ideas…. “Do you have a plan? Do you have the means?” If the answer is yes, involuntary hospitalizations often follow.
Unfortunately, or fortunately as the case may be, many people are aware of this possibility and thus do not disclose this information to care providers.
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Dear Jonah, I really appreciate you bringing up this point. I have also been thinking about the clear parallels with movements such as the right to die with dignity and assisted suicide for terminally or chronically ill and severley disabled (and/or in pain) individuals.
This is a really, really important point and I would hope that we could be fearless in including it in our conversations as well.
Is suicide a choice? Is is a right? Can it be chemically induced? Can it be a response to ongoing trauma and abuse such as the repeated involuntary hospitalizations and treatments you recount (for which I wish you hadn’t experienced)? Can it be an act of passionate impulse? A long planned choice?
I’m guessing, if we’re honest, we could answer Yes. No. Or Sometimes in each case. But it would be nice to find out. And to then talk about what we do with those answers and insights, how they related to individual freedoms, and if we should do anything, and when, and how? All things that are probably best decided by those involved not top-down, depersonalized systems.
Thank you for asking us all to think about when suicides are tragedies and when they might be something else. A very good question. I, for one, would like to prevent the tragedies. Life is so precious and fleeting, if hope can be restored, I’m all for it. (At least, that’s what I’d want you to remind me if I find myself in that dark place again…)
Warmest regards to you,
Jen
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Dear Joanna,
Thank you for bringing up the connection between socio-economic conditions and suicidality and emotional distress.
We all need safe and reliable housing, food, clothing and healthy human connection, not only for our mental health, but for our very survival as a species. There is no doubt that a lack in any of these areas can create despair and hopelessness that can manifest in all sorts of tragedies, including suicide.
I would love to see more non-medical sanctuaries such as you suggest, where people who are suffering can be nurtured with respect, dignity and compassion and free from fear.
Even more so, I would love to see us all be able to reach out and talk openly about these feelings and impulses without fear of involuntary treatment or hospitalization so that we can get support without necessarily needing a sanctuary, or perhaps by making sanctuaries in our homes, places of worship and other safe places where people gather to connect and share that can help normalize the experience and the experiencer.
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Dear Monica, thank you. I look forward to reading your blog on this topic. I love your blog but had missed this one.
Thank you for speaking to the need for supporters who can bring calm loving presence, not fear, to the vigil. I agree, this is vital. In fact, it was probably what was most absent that hour on the bridge before the jump. Our collective fear. The lack of news coverage and general silence speak to our ever present and deeply entrenched fear of death.
As a young meditator, I was horrified at the instruction to meditate on my own death. After 20 years and the loss of so many friends and loved ones, I think I finally get it. Perhaps we all need to meditate on this and then speak openly and often about what it means to be human and vulnerable and to suffer.
Monica, we have some lovely friends in common, so I have been aware we are neighbors, and I would love to join you in your garden when that feels good. I’ll send you a note with my contact info via Beyond Meds.
I am not surprised you didn’t know about the suicide. Most of the practitioners in our local mental health community are still unaware. Another irony. Susan Reinhardt ran a Sunday feature on it a week later but she ended up focusing more on Mother Bear. We can’t seem to stay present with the pain…
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Thank you, Steve. I agree that excruciating emotional and physical pain (often a whole body experience) coupled with loss of hope and isolation are soul killing and often lead to predictable tragedies.
It is not hard to understand why someone would want to end unbearable pain that they have no hope of relieving. Not hard to understand, but there is so much we can do to restore the spark of hope. Pain is such much more bearable when it is shared with others who genuinely care about our wellbeing, who can help us hold this pain without adding their own fear, who can remind us dark nights of the soul are universal and normal, who can simply be with our pain until we can find our way out or at least imagine the possibility of a way out.
I would love to hear your thoughts about ways we can become more caring, supportive and civil around suffering.
Warm well wishes to you too, Jen
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Duane, thank you for sharing John Donne’s beautiful line. We are all diminished by these losses.
And thank you for inspiring our work at Mother Bear. We adopted you into our clan long ago, brother bear! Thank you also for saving lives by promoting possibilities for discovery (love this!), transformation and recovery.
Gratefully, Jen
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Lucy, thank you for speaking up and out to support alternative and humanizing perspectives on emotional distress and mental health challenges. I am encouraged by the DCP’s move. And the press it is garnering. We have professional groups in the US trying the challenge the medical model as well, but their voices seem to get lost in the din and the dazzle of new frontiers of brain research.
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Thank you Duane. Agree about the big tent. The conservative issue just came up at Peter Breggin’s conference last month. He made the point that there had been many times, including recently, when more liberal-leaning press were not as supportive as conservative press. People are concerned across the spectrum, and not concerned across the spectrum too. And harm is done on both sides of the political aisle.
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Joanna, what a beautiful, freeing vision. I hope we get there. Now, how will insurers code that?!
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Thank you too Monica. Your approach reminds me of a teaching by Pema Chodron about facing the things that scare you and becoming fearless. Free.
It takes great courage to love the spectrum as you do. But clearly worth it!
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Dear Sandra,
Thank you for pointing out the very real dilemma individuals, families and providers in a “system of care” are facing. Truly, a “can’t-win-for-losing” dilemma that encourages individuals to ask for and accept diagnostic labels for insurance coverage, encourages parents to “disown” their adult children in acute distress so they can qualify for public aid, and encourages parents of young children to seek diagnoses to get learning accommodations in school settings.
With regard to parents of young children and classification systems, I recently witnessed a disturbing exchange during a presentation on supporting families with “children with severe mental illness.”
In response to the parent educators’ insistence that children need to be diagnosed early to get much-needed treatment and access to services, a parent and peer family worker shared that it was much better to get an autism diagnosis than a severe emotional disturbance diagnosis, because the latter has resulted in institutional discrimination for her daughter, who is no longer allowed to participate in after school activities, clubs, sports, etc.
Despite this discrimination and limiting of her child’s social opportunities, she had no overarching concern about labeling her child, just about picking the wrong label, as if we could pick and choose (well…).
I was stupefied as other parents then asked about which diagnoses were best for accessing services. There was no question, save in my mind, that the diagnoses themselves were a problem. Or that there might be another way to support our children’s divergent emotional and learning needs. My audible question to this effect met with blank stares. As did my question about using WRAP for Kids or acknowledging the role of trauma, resilience and developmental and attachment issues.
Brain disorders and diagnoses were far more interesting and, certainly, grease the wheels of insurance coding, office reimbursement and benefit payouts much more efficiently. A process we are all complicit in, as this exchange proved.
I’m not sure I have a better answer than your “safety net” insurance idea (which is not bad, by the way), but I guess I do fall back on the belief that we should avoid diagnoses altogether, if at all possible, especially when talking about children under 18 who do not have their own agency or sovereignity and for whom the effects of diagnosing can be catastrophic.
I really feel for the position you are in. So many people who so desperately need care and have to work within an imperfect system to get it. I appreciate you hanging in there and trying to make a real difference.
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Rossa, Thank you for bringing trauma into the discussion. I wish that Insel had.
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If you have followed any of Dr. David Healy’s recent posts, you might be inclined to leave the scientifically tested treatments behind too. These are not without their own biases, observer error and misapplications of the scientific method, a method which philosophers and quantum physicists don’t necessarily embrace in part or whole either.
I appreciate Laura’s concern and desire to start with our individual human attempts to make meaning from and negotiate our suffering, and to work patiently, lovingly and respectfully from there.
Laura, I also appreciate your compassion for those for whom diagnoses, labels, and potentially harmful treatments are still part of their meaning making process.
It is a tangled web we have woven and it may take quite some time for the unravelling.
Like you, I worry that NIMH’s new direction, brain mapping and other wildly expensive “brain science” research may be the birth of even more powerful spinnerets whose entrapment may extend well beyond that of the current DSM or, at the very least, keep us stuck in a web of diseases and despair.
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Duane, you are master of the sublime!
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Thanks Matthew for your determination to keep the site and all its valuable resources secure. I’m not sure why the Lone Gunman are coming to mind, but then I did name my first-born Gillian 😉
Again, thanks for vigilance and expertise!
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And on a very practical note, bless you for bringing up the issue around exercise. It is a double damn with psych meds. Maybe an exponential damn, which includes
* Unhealthy weight gain that accompanies many of of these medications
* Side effects that can steal the will to exercise and make it very uncomfortable during exercise (dizziness, deep fatigue, hot flashes, nausea, etc.)
* The frustration of trying to work with a new body that doesn’t seem to be working with you
* Discouraging research that shows little improvement in mood for those on anti-depressants who exercise (the exercise only, or exercise and talk therapy approaches showing the best outcomes)
Metabolic disorders and weight gain are so common with some of these medications, that exercise should still be a goal, but I have tremendous compassion for the mountain that must be climbed to do so. Too bad that doesn’t burn calories.
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Monica, I am in tears reading your love story of your healing, which goes beyond your beautiful life to include, as you said, everything. I feel you sparkling in this web of life.
I have been following (and recommending) your blog, BeyondMeds, for almost two years now, and I remember when you didn’t have hope (or perhaps that was me) that you could find relief from the debilitating pain caused by long-term psychiatric drug use.
Your journey and insights are deeply inspiring. So many of us, myself included, are working on healing deep pain and embracing the lives we have been given – messy, painful, traumatic, boring, exciting, mysterious, and joyful – all of it without exception. But the state of grace you describe takes a warrior to find and a gentle soul to embrace.
I hope our paths cross some day. I appreciate your life and celebrate your healing!
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Thank you again, Douglas. I know community has been really important for maintaining any mindfulness practice (which helps me work with my own challenging emotions). I think it is even more important to have good friends and supports to keep us connected to our will to live and our meaning and purpose in life.
I’ll look forward to your post and appreciate your willingness to share so intimately from your life. These feelings are do common, but so few of us will talk about them.
Thank you for normalizing suicidal feelings and for showing up us ways to work with them that are life giving.
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Douglas,
Thank you for sharing this important technique for working with deep distress. I have used mindfulness practices for more than 20 years and there have been times when mindful breathing was the only way to get through the next moment, and the next, and the next.
I wanted to recommend another resource that I have found very helpful. Philip Moffit’s book, “Dancing With Life: Buddhist insights for finding meaning and joy in the face of suffering.” I have read this book twice with my sangha (faith community) and have found it invaluable for developing specific practices and attitudes toward our own and other’s suffering. Philip talks at length about how to bear up under pain and how to transform it with mindfulness.
I would like to point out how important it was that I did this mindfulness work in community (no need for a spiritual community, it could even be just a few friends practicing together). Sometimes we need to share our pain, to unburden, long enough to take a collective healing breath. Alone, it can be hard to “get on the cushion” and also easy to get trapped there.
Being able to bear pain is greatly enhanced by having supportive friends who can help bear witness to our pain, as in the relationship you have with your MBSR friend and practitioner. I think, often, this need for witnessing is part of public suicide attempts. We need others to understand the depth of our pain, not just learn to breathe through it. But breathing through it can keep us alive, no doubt.
I am so glad that you found this practice and your friend at a critical time, and appreciate your sharing it for others’ benefit.
For those who are interested, here is a link to the book I recommended and a website with exercises and reflections:
http://dharmawisdom.org/books-phillip-moffitt/dancing-life
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Thank you Will for raising this topic over and over again. There is still far too much silence and shame on this subject.
I have recently come to realize just how much double binds and unbearable dilemmas play into hopelessness and despair, and how rational death can seem as a way out of seemingly “no way out” situations that our culture seems to foster and multiply.
It really does matter that we have safe spaces to confide our innermost pain. To lay it out openly, look at the pieces and implications, and have the time and fearless support to make meaning of our darkest emotions.
I do find some irony in the role context plays.
Buddhist monks and acolytes are often instructed to spend a good deal of time contemplating their death. When possible, to meditate in charnel grounds. To be with the very intimate experience of dying in the flesh. It is believed that only by fully embracing one’s death can we hope to embrace life (and choose wisely how to live it).
Natural childbirth and indigenous rites of passage and vision quests often involve a metaphoric death of one life to enable rebirth in a new form.
And, perhaps most simply, in our culture where we are told to buck up and “suck it up,” we create a false “do or die” dilemma that can make a suicide attempt the first legitimate bid for help, love and support, a bid that becomes can become its own double bind and self fulfilling prophesy.
That you for creating an in between space for calling our greatest humanness forward.
Jen
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I would like to echo Louisa in haring my gratitude for your clarity with regard to the harm wrought by accepting the mental illness paradigm and your compassion regarding the millions of us who have bought into this paradigm, seeking healing and relief from intense psychic pain. I think the survivor and anti psychiatry movements can inadvertently heap shame upon shame for those who have already suffered greatly.
I also appreciate your recognition of the tremendous resilience of the human spirit. Linda’s story is a beautifully written triumph of the spirit (and the abiding love of her family, another unexplored theme). That she could reclaim her eloquent voice and a growing sense of self in the face of such extensive trauma and toxic over medication is nothing short of miraculous.
And Linda has “come back” with eyes still wide open to the fact that life does present seemingly irresolvable deep dilemmas. We are born to die. We will leave our children parent less. They may well leave us childless (particularly as we medicate them at earlier ages and given our increasingly unhealthy culture). We will suffer losses big and small throughout our lives. Sometimes these losses will feel unbearable, particularly if we lack robust social support.
An entire world religion emerged 3,000 years ago (perhaps all religions stem from this dilemma) to address this profound fact: suffering is an intrinsic part of life. But so is joy, and love, and meaning, and connection, and transformation and growth. If we try to numb one, we risk numbing all.
It strikes me as a bit audacious and, yes, deluded, that in a little more than half a century, we have come to believe that medicine can eradicate suffering. A rabbit hole harder to escape than denial and distraction, our previous “go to” drugs of choice.
But even then, we can slip the gauntlet, as Linda’s remarkable story shows. Ours is the work of ensuring all of us can slip it, because far too many don’t under our current diseased paradigm.
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Kelly, thank you for sharing this perspective on the transformative and healthy process of intense pain, in this case unmedicated natural childbirth, and the importance of have a “midwife,” someone who bears witness, gently guides, reminds mothers of their inner strength and the millennial “heroine’s journey” all the while remaining confident that all will be well no matter the fear or intensity of the process.
I would like to echo Steve as I feel it is really important to use the midwifery and childbirth metaphor when contemplating how we can support others going through other birthing processes, which extreme states can often signify.
We need more midwives and doulas in psychiatry, psychology and among our families and friends.
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David, thank you for your elegant deconstruction of Bad Pharma”s central arguments and blind spots. Your analysis of Goldacre’s book reminds me, with some alarm, of colonial hegemony. To consider that EBM and RCT’s can be used to further chain us to a corrupt system, and that we are clamoring for it (with the best of intentions), is chilling. It is also a marketing and public relations coup d’état, one rarely achieved so brilliantly.
Sociologists and marketeers have long known that statistics can be manipulated to serve any argument. The former profession has long prized qualitative data, thick description and lived experience over contrived experimental studies. But, the Scientific Method and quantitative analysis have always trumped “the truth before us.” Which brings us back to hegemony and the power of science to disempower.
The challenge, once a lie is deconstructed, is what truth, with a little “t,” do we create? And how then do we hold on to it?
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Thank you, Sera.
I really appreciate your thoughtful and ongoing commitment to challenging long-held cultural, scientific, linguistic and other assumptions, including your own.
As long as continue listening deeply and inviting dialogue, we have an opportunity to grow past out of all these ill-fitting, thread bare costumes we keep trying to dress each other up in.
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Sera, thank you for speaking truth to power, and, as always, very eloquently and with an eye to the absurd, which might be said of Mr. Pies monologue.
There is a whole field within Sociology devoted to Labeling theory. A whole field within literature devoted to deconstructing language and its power to shape and misshape our reality. Not to mention the massive and ever-present business of marketing, which is all about how you label and sell things.
To dismiss the power of a label, a word, a voice, is to dismiss our humanity. Perhaps that is the greatest breach of “civil liberty” and what makes it possible for all the abuses you mention to follow.
With gratitude for your vigilance and voice,
Jen
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Thank you Tina, and Maxima, for going to such great lengths and with such well-reasoned conviction and commitment to protecting human rights. You are giving voice to thousands and millions who haven’t been heard. I wish us all well in your efforts and the UN’s deliberations.
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Thank you for publishing these letters. This is such an important public dialogue and once which needs even more air time as these “bibles” hit physicians’ and clinicians’ desks with resounding thuds – which are, I fear, the sounds of countless hopes and dreams being crushed.
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Jen,
Thanks for sharing your story with courage and self-compassion.
I, too, was really touched by Milt Greek’s presentation, in so many ways. As someone who has studied Buddhist and similar practices, I do believe I understand Milt’s concern that his desire to embrace and celebrate his unique gifts not be mistaken for false pride or egotism. I also sympathize with the Mad Pride movement which, perhaps, has not run its course as self- and other-directed stigma regarding mental health challenges and diversity is still so pervasive. Sometimes the pendulum has to swing wide to correct an imbalance and bring us all to center.
What impresses me about you both, Jen and Milt, is that you have used both your suffering and your gifts, to enrich other’s lives significantly.
We should all hope to live lives this full. Thank you both for sharing your hearts and lives.
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Oryx, your perspective is revolutionary in its simplicity. These three approaches we can all do more/better/adopt. As a parent of school aged children, I’m trying. Need to try harder. We all do.
One thing that I loved discovering in children’s school, was the concept of Multiple Intelligences, an educational approach developed by Howard Gardner. It teaches that we all have unique intelligences, strengths, and that is is only by valuing, making room for, and including them all, that a community can be truly smart and healthy. This could be a blueprint, along with other wise views, for community and individual healing and “allophilia” in action.
Parker Palmer is another fantastic resource for developing community inclusion and healing, he has also been a revolutionary thinker in Educational theory and reform, bringing his Quaker principles to bear. His Circles of Trust process is noteworthy for community organizing, support and growth. http://www.couragerenewal.org/about/foundations
Interestingly, Parker Palmer has had his own struggles with debilitating depression.
As a parent of young children, you are in a wonderful place to discover some practices and philosophies that can really empower your three point plan!
Thank you for reminding me of these resources. I’m inspired to look again and see how we can bring them into our family support programs and my own home and community.
I appreciate your work and perspective so much, Oryx. Thank you.
Jen
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Dear Philip, I appreciate your acknowledgement of the importance of the stories psychiatrists tell their patients. Also the gentle nudges from commenters that what may be most important is how skillfully supporters encourage the human being before them to tell their own story. To unfold it, perhaps by shining new more and less helpful perspectives on the story telling, maybe with a few “writers prompts.”
Ultimately, if psychiatrists, therapists, family, clergy, friends, can compassionately and patiently ask “Tell me your story,” perhaps that is the most important narrative of all.
I think that is what you were implying anyway.
I’d love to also add the concept of ethnography and thick description (Claude Levi-Strauss) which places highest value on those with lived experience,; postmodernism, which really helps explore the nonlinear nature of narratives and, I think, rightly challenges the implication that history follows a linear path or time conventions; and the wisdom of the East which allows us to drop stories when they are not helpful, regardless how how entrenched they seem (historically, generationally, culturally).
So many rich things to consider when we look at life as stories we tell ourselves and each other.
Thank you again!
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Dear Jacqui, thank you so much for speaking out and sharing alternatives that could have/could yet help Jani’s family. From what I can gather from their Foundation’s FB site, they are not in a place now to consider these options. Hopefully, one day soon, and perhaps with some very good trauma therapy as this situation has no doubt been traumatic for everyone in the family. From the sound of it, deeply traumatic.
Would it be possible to repost these 10 tips on our http://www.MotherBearcan.org website and FB page. We are very supporting of the Hearing Voices movement and would very much l like to share these insights with our families.
I am a bit saddened reading what feels like personal attacks in the comments. There is such potential for “survivors” and those with lived experience to help parents, family members and friends empower their loved ones and heal the whole relational dynamic. But we can’t do it by shaming and attacking. Nothing good comes from that place. Just more broken-heartedness.
Jacqui, I do appreciate the compassionate way you spoke your truth as a voice hearer and also as a parent. Thank you for building a bridge for us all to join you…
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It takes yours to bring mine out 😉 I appreciate your leadership and heart and questioning…
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Dear Al,
I am very grateful for ISEPP’s leadership and careful scrutiny of the concerns surrounding our overemphasis and over-reliance on medications, particularly with regard long-term use and use in vulnerable populations such as the elderly and children.
It is perplexing why known and FDA listed side effects of aggression, suicidality, among many others, are not part of the current national discussion on violence.
I hope ISEPP’S’s, PsychRights and others’ voices find a place this table.
Jen
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Dear Sera, thank you for this insightful post. It reminds me of something my favorite professor used to tell students in our intro to Sociology classes. To understand human nature and culture you always need to start with one basic question, “Why is that?”
Questioning our assumptions, filters, language and labels is a gateway to freedom. I think we should be cautious and resistant to all labels, even seemingly positive or culturally valued ones. And especially ones used to disempower and marginalize. All labels ultimately segregate us from others and from other aspects of ourselves. Making artificially concrete that which is fluid and ever changing if we don’t cling (and even when we do).
Your blog reminds me of a passage from Richard Bach’s “Illusions,” which I’ll paraphrase as best as I can recall
“To define the Truth is to Limit it.” (or perhaps it was to destroy it).
Thank you for questioning the many illusions in mental health, and encouraging us to drop all labels in favor of our shared humanity. We could even take it a step further, we are more than human beings, we are divine. And that birthright connects us with all life human and not, sentient and not. *Stardust* as someone so beautifully pointed out.
I am grateful to know you are safeguarding all of our human rights.
Thank you for your heart and voice.
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