I have these epiphanies sometimes, upon awakening. Well, it’s not exactly awakening. It’s more like several voices having conversations, with layers of other sensory experiences happening at the same time, while my body lies in a sort of impassive state. I’m not aware of having a body at these times. At the stage of reaching an epiphany, I shoot up out of bed with a visual phrase, something that feels vital. Most of the time, from there, I can just get on with my day. I often have an overwhelming urge to write these epiphanies down; then I remember how impossible it is to try to transcribe the experience after the fact, and I tend just to give up before I start. This morning I hit on something, though, and I want to try again. So I’m going to try and rewrite my steps, stay on track, and get this down. This feels important. I feel ready to try again.
So, part of the conversation was these intense feelings of anger. All this work that I have done for the “movement,” for change in the way “mental health” is seen as an issue, for change in the system that damages and tramples the basic human dignity of so many; the system that further (albeit unintentionally) destroyed an already wrecked version of “me.” I’m still not at peace with that system, with who “I” was, or who “I” am. In my impassive state this morning, a part of me was expressing rage and hatred for what I felt the people in this “movement” have done to me. These are the same people that most of me consider my brothers and sisters, the people fighting for change alongside me. And yet I felt that I’d been asked to fight alone. I was angry at my brothers and sisters because, after spending nearly ten years fighting for change, I feel more isolated than I’ve ever been.
I’m burnt out on this impossible work, my body is rejecting me with all sorts of complex health problems, I’m still struggling badly financially. I feel like they took every drop I had to offer and sucked it out of me, then dropped me to rot or be eaten by the wolves out here in this place where there’s such resistance, and such distance between my “selves” and anyone who understands, as “I” do, the injustice of it all.
I am a person labeled with “severe and persistent mental illness,” and so I have been trying to break the cycle of oppression that comes with a label like that. At the same time, I am trying to find ways to heal and to accept things about myself that are different from others, while also seeking to raise up my brothers and sisters in this desolate and dark place. Many of them have been so broken and oppressed that they can’t see how wrong the way they are “treated” really is. I get that. We’re told to believe they are helping us, that we’re completely useless, that we’re incapable of success, that we should lower our standards for what we can dream to accomplish in life.
Part of the thing about this impassive state is that there’s a lot happening in a short period of time; it’s not just an audible state for me but a full on warp of all things sensory. It’s jammed with intensity, and it’s hard to express linearly. As I lay in this state, I began to see a vision of myself as a maybe 50-something African American man, walking down a dirt street in a shanty town somewhere in the south just around the time when the civil rights movement for my people was in full swing. I was this guy I was seeing. I was walking down the dirt street – smells, sights, and sounds included – and I remember thinking that I had taken great care to be clean and groomed. Dressed in a mismatched threadbare suit, wearing a twill cap, doing all I could to look my best – though still obviously not on par with the affluence of the whites in neighborhoods of completely different character, with clothing of completely different price range, living so near and yet so far from me in nearby neighborhoods with paved streets and big fancy houses with white picket fences.
I was more than that, though. I was a man fighting for change, assisting my people in rising, in seeking equal rights (though I’m not sure that I, as this man, would have phrased it like that). My body hobbled, the pains of the good hard life I had lived; was living.
This guy I was in, suddenly he realized something inside me, something that made me shoot out of bed – it’s not my brothers and sisters who have caused this pain and strife in me. I’m not angry with my brothers or my sisters in this “movement.” It’s this fight that’s hurting me, breaking me down until I feel like I can’t go on anymore; it’s the world pushing back on me, the constant fear I live in while speaking out at the injustice I face.
Upon shooting out of bed, and coming back into “myself,” there was this phrase of the morning’s epiphany: “Of course, I’m fighting for change!”
So, I began the rest of my day from there. Some people in the world have ingrained in them a willingness to perceive fully injustice, and an almost overwhelming need to speak out against it, to fight for change. I know I was like that from a very early age, even though it’s always gotten me in a lot of trouble. I can’t stop myself from speaking out, even when I know the consequences will be painful, prolonged, and isolating. I can deal with pain. I can deal with isolation. What I can’t do is keep quiet about injustice.
So I’m fighting this battle for change even though I quite literally feel like it’s killing me, even though the physical and emotional pain is fairly well constant, even though I rarely speak about that (complaining about the consequences doesn’t fall under the same category as this overwhelming urge to fight for social justice). I fight even though the isolation and abandonment I feel is only occasionally broken by one of my brothers or sisters randomly reaching out, even though it’s usually because they need something from me – none of this can stop me from fighting, and any animosity that any part of me has for my brothers and sisters who are fighting alongside me is misplaced. They are not the cause of this; they are my fellow casualties. This war is slowly killing all of us, even those who don’t have the awareness to fight.
There is, and always has been, resistance to change. That is what is killing us. It’s not any one person, or group of individuals, or even corruption in politics through corporate interests.
The people, many of them so broken down and preoccupied that they may believe that the need for change doesn’t exist, or that it’s someone else’s problem – the majority instantly awaken if this resistance to change fades away. They see how everyone and everything is connected; there is no longer a need to fight once resistance is gone. We regain our humanity and our understanding. We see clearly that the order of things has veered so far off course that we are all in danger of imminent demise.
All of the fights for justice are connected. Someday we will see that we were all really fighting for the same change, though life’s direction may have placed us on different fronts. The people behind the power and influence that fight so hard against change may one day begin to open their eyes. They may see how the war they were so desperate to win, the people they were so desperate to silence, the world that seemed to dance for them – all of this was a blinding illusion, and the truth is that they were acting as the harbingers of death, ushering in an age that even they themselves could not survive. They were the proverbial lemmings in the lead, feeling powerful as they influenced the course of all those behind them, not realizing in their egomaniacal state of power and control that the vital truth they were missing was that they had no idea where they were running to.
So it’s the fight for change that’s really killing me, and the culprit has no face, the culprit is the phenomenon of resistance to change. I don’t know if I’m more frustrated now, or less. I do know that this epiphany felt important, well beyond me. Though I don’t know what I’ll do with it now.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Awesome essay, Jen. I share your conclusions; all these different issues are *connected*–YES!
What is the greatest threat facing life on earth today?
Is it psychiatry? Is it (lack of) health care? Is it GMOs? Is it racism? Is it endless war? Is it global climate change? Is it the police state? Is it immigrants? Is it Russia/Isis? Is it the Democrats/Republicans? All these separate issues keep us divided and vying for resources…not unplanned by the elite, imo.
Capitalism with the constant chant of “growth” and “profits” is killing us like a cancer. Can we challenge it successfully in time before life as we know it is wiped out?
I often think that the human specie is a failed experiment, facing an evolutionary ‘cliff’ as you’ve mentioned. I don’t think ‘we’ are smart enough to pull it together in time. On good days, I can live with that and accept it. For myself, knowing that does not mean I quit struggling with the greed and mindlessness I find myself surrounded by. It does not mean I am not angry, tired, disappointed and grieving.
Fight for what is important to you until the very last breath.
I could never shut-up about all the injustice either.
Thanks for what you are doing:)
Thanks for sharing your thoughts on this piece, humanbeing. My hope for sharing it is that we can start to come together more and we can reverse the course that seems so impossibly headed for complete worldly devastation. I think there are many MANY people out there that see the damage being done on a global level in a multitude of arenas.
The trick, and again my hope, is that we can recognize how common that disgust of the status quo is and move towards coming together. What is impossible alone becomes possible together.
I have seen solutions to complex and seemingly impossible issues spring forth quite naturally when diverse groups of people come together and deeply listen to one another in dialogue. So many of want the same things really-dignity, equality, safety, respect, opportunity; and so many of us have pieces of the solution. When we come together and deeply listen, respectfully engage one another, work together- then these pieces have the power to transform ourselves, our communities, our world. If each of us dare to hope and begin to move towards unity-then maybe we got this. It’s worth a shot, right?
I unite with you, your experience and your message. Your blog clearly described my own current condition. I too, feel tremendous hope and despair, and underlying that lies my deepest awareness that we are all in this process together and can connect in diversity to co-create change.
Thank you, Berta. We fight on. Together, maybe it’s a little easier.
Is it a coincidence that this exact topic is being discussed in this months issue of The Atlantic?
Sorry, this comment was meant for another posting…”Not So Rare But Rarely Diagnosed: From Demonic Possession to Anti-NMDA Receptor Encephalitis”
Jen, great essay. As a fellow survivor I loved your poetic descriptions about the struggle for change. Just wanted to let you know I’m reading and supporting everything you’re saying here!
Thanks for reading, for your comment and for your support, BPDTransformation. Most appreciated.
I feel less isolated and more hopeful after reading your beautiful essay. Like you, when there is a hint of inspiration, making getting up in the morning a little easier, i follow it! My purpose is to achieve justice for my daughter and everyone like her who has been restrained, needle raped, secluded, institutionalized, infantalized, told “You have a brain disease and you will never recover” or “You are a burden but we are good people so we will bear you”.
I am a complainer and a blamer and not a very kind person when I am tired. I get tired often. This movement makes me tired. I wish I could go on a long, relaxing cruise and take every single psychiatric survivor with me and we could laugh and dance and forget about labels and meds and oppression, if only for a little while.
This essay rings so true on many levels that it makes my heart lift. My adult daughter feels that she is being slowly killed by the drugs and she is haunted by terrifying memories of seclusion. I hope she will gradually feel more optimistic about her future and I hope that she will become empowered.
I am not an effective advocate with professionals as it concerns my daughter’s treatment. Our support of our daughter mainly consisted of visiting her regularly, nudging extended family members to visit and call her, especially on special occasions. We tried to build positive relationships with the gatekeepers, nurses, and administrators of every institution where she was forced to live, going out of our way to thank staff members for any little kindness, no matter how small, always mustering diplomacy even when our inner rage at our daughter’s violated rights was so profound that we felt like clawing solicitous and patronizing staff members with our fingernails, baring our teeth, and slashing their car tires. We tried to stay engaged without earning the monikers typically placed on family members who are too engaged, too ‘pushy’, too concerned. I occasionally hear from parents who were blackballed from facilities or falsely accused of abuse because they questioned their children’s involuntary treatment and forced drugging. Other parent activists have sacrificed much more than I to speak truth to power to arrogant prescribers and I tip my hat to them.
Every time we said goodbye to our daughter after a visit, whether it was a private hospital, a state hospital, a foster home, a secure psychiatric residential facility, we felt like it might be the last time we would see her. We battled to keep hope alive, while feeling tired and sad; worried about the prospect that our beautiful, artistic daughter would become like many of the sheepish institutionalized people we observed, many of whom hobbled back and forth, some with the aid of canes, some with walkers, some in wheelchairs, permanently disabled with tardive diskinisia, some with jaw grinding so bad they had become toothless, some with tardive psychosis they appeared to be permanently incoherent, most with metobolic disorders and obesity from decades of drugging. And seeing all this on an ongoing basis, knowing that other, more humane alternatives exist!
Miraculously, despite being segregated for six years from ‘sane’ society, our daughter continues to make a concerted effort to share in community life. Facilities did not grant her passes until recently when she finally landed in a humane facility founded on the principles of Viktor Frankl. Now, we can routinely take her home on overnight visits, take her horseback riding, drive her to hearing voices support group meetings in another city, to a bakery for vocational training. She is also helping me with routine data entry at MindFreedom. She missed funerals, weddings, baby showers, graduations, birthdays, and family trips, but family members sent her invitations anyway and she responded to them gracefully without complaint. She chatted about her own friends, and plans and we often didn’t know if she was recounting from memory from before her first hospitalization or if she was describing things from her imagination but it didn’t matter. Even imaginary friends and lovers and distant, positive memories can be helpful and keep hope alive. Remember that if you find yourself in solitude (not by choice) for six years! She keeps abreast of our family’ news, helping make shared family plans, while navigating internal worlds beyond my imagination and dealing with oppressive clinical practices with patience. I hope she has not ingrained helplessness!
Despite the complexities of her internal experiences, despite the mixed messages she is given by the ‘system’ about what constitutes recovery, despite all the oppression she experiences, miraculously she finds a reason to get up every day and I am so proud of her. I love it when she remembers who she is and what she loves, despite the dissociation, the numbing side effects of the dopamine binding tranquilizers which her brain has become habituated to, despite the slanderous things that have been written about her in reams and reams of medical documents, despite the constant lack of privacy, the cameras and the supervision, she still smiles and she still shows up. She is an artist, a confident, a counselor, a healer, a leader, a singer/songwriter, poet, and and philosopher.
Her smiles light my day. Lately, I have noticed a change in her and I don’t know if it is good, bad or neither. She still believes that she is dying but she is resigned to her ‘fate’. I too, have changed. We, her parents are tired of shedding tears and screaming inside, or worse yet, getting into arguments and blaming one another for this protracted psychiatric abuse and lack of humane alternatives. Our whole family is tired. Sometimes, the fear for my daughter’s early death due to psychiatric harm is so palpable my hair stands on end. Her hair is turning white. So is mine! Some may blame her cirumstances on we, the parents. Sometimes I blame us. I say to myself: “We should have done more to protect our daughter from harm. We should have intervened earlier. We should have sold everything we own, kidnapped her when she was on a family pass and left the county” A number of scenarios run through my mind, some more desperate than others. But I get tired of second guessing. I get tired of being angry and remorseful. For now, she is alive and that is enough. My love for her will never change.
Wow, madmom. Thank you for sharing your heart and a bit of your family’s story here. Your words are powerful, and your experience has value. I am so glad to hear you are feeling less isolated and more hopeful after reading my piece.
What I hear you saying regarding guilt I actually hear quite often when listening to family members. I feel called to tell you a couple of things- please take them with you if they resonate, and disregard them if they don’t.
First off, it sounds like your daughter has better odds at a full recovery because you are in there fighting with her, supporting her, any way you can. If there is one thing I see, it’s that we need real human beings, who really believe in our abilities and genuinely support us in order to recover. I hear you speak of her talents, recognize her abilities. That’s huge, and so rare among family members. So often their loved one is seen as a burden, permanently ill and forever in need of “care”. She already has you recognizing her talents, hoping for her.
Secondly, none of us can go back in time with the things that we know now. We don’t receive some magic healing from our own life difficulties when we become parents, we don’t suddenly know things we didn’t before, we don’t automatically know what to do. Just because we have so much love for our children, just because we worry about their welfare every moment, just because we want the very best for them and never want to see them hurt- none of this can protect them. There’s a world out there, there’s bad things and bad things happen. We can’t control that, can’t prepare for every situation, and we can’t fix things for them. The good news is we don’t have to. We keep loving, keep learning, keep trying, keep believing and somehow that makes the difference. As a mom, I HAVE to believe that.
I hear your intentions, your love, your expression of the what might have been, and your exasperation at what is. All of this points to a parent who keeps loving, keeps learning, keeps trying, keeps believing. What more could you do? Sounds like you’re doing it. Would you ask more of any other parent? How could you ask more of yourself?
Thank you, again, for sharing a bit of your personal journey. Thank you for being who you are and loving the way you love. We are all connected, what you do and who you are resonates throughout the world. That’s true for each one of us.
Your kind words are very appreciated. From one mom to another, THANK YOU!
Extremely beautiful and honest heart truth and soul wisdom in this dialogue. Honors to madmom and Jen. I feel the kernel of change in this sharing. Truly awesome. Thank you.
wow, indeed. Why do I think your amazing daughter gets her strength from you? I wish I could offer more than an expression of my awe and admiration for you both, for bearing the unbearable with such grace, strength, dignity and resilience. I can only hope that these qualities will allow your daughter to persevere, to keep going, to become more optimistic about the future, and to feel that her life has meaning and purpose. There surely is a reason for someone with such attributes to be here; I hope she feels it more and more and that it gives her the strength and will to keep going. Blessings to your daughter and your family.
GetitRight:: Thank you for the kind words. My daughter gives me strength more than I give her strength, I think. You reminded me ofthe words of my friend David Oaks (I have paraphrase as I can’t remember his exact wording) People in distress, such as those despairing about climate change, should seek consolation and get support from psychiatric survivors! They have a huge untapped wealth of acquired wissdom and resilience.
Reading your words, the exhaustion fills me as it often does after a long day fighting this fight that we share. I clench my fists. I scream in my head. I demand that these righteous changes that our common causes require happen immediately. Human kindness, social justice, civil rights seem only philosophy and rarely seen in practical application.
Then I remember a day walking with a friend by the Mystic River. She’s taken me in like a stray and offered to meet my basic needs with her sincerity and connection. As I’ve been in the past, I’m overwhelmed by how thankful I am to have her in my life. She humbly asked me to read the words/story/heart that she has now shared with the world. Seeing it here, on MIA, fills me as it did on the banks of the Mystic.
It is peaceful for me to know you exist – you and so many others that I admire and love. You remind me that I am not alone, that my voice is not singular, that my strength is not measly. I’m so humbled to identify as an instrument of change and to be standing shoulder-to-shoulder with you.
We fight on.
Much love and appreciation, ~Lisa
Beautiful words, my dear friend. I am grateful for you, and those memories and genuine interactions carry me through. Thank you, my sister. Yes. We fight on. There’s nothing less we can do.
Jen, thank you for sharing your story with us.
I feel that we all must reject all aspects of the mental health system, and even the concept of mental health. We must also reject any and all forms of psychotherapy, recovery, or rehabilitation.
It is all based on the premise of innate moral defect, as derived from the religious doctrine of original sin.
And even after reading people’s stories and discussing them, it really is hard to see how anyone could ever end up in the mental health system, or in therapy or recovery, unless it were simply a continuation of childhood familial abuses.
Our society needs scapegoats, to hold up for public humiliations, in order to maintain discipline in the lower end of the workforce. It used to get these in the immigrants and racial minorities who did low wage labor and slave labor.
But now in the information age, there is much less need for any type of labor. So using things like substance addiction, developmental disabilities, and mental health, and psychotherapy and recovery, it gets these scapegoats from the middle-class family itself.
So we must never go along with this, never go along with pity seeking approaches, and especially when faced with something like this Murphy Bill. When we seek pity in therapy and recovery, we are aiding those who advance Social Darwinism and Eugenics.
We must instead organize and act aggressively to bring abusers to justice, including parents and all types of doctors. No one who has abused their child should ever be allowed to hold on to money or assets. No doctor who markets to parents to help them “fix” their child, should be running around not in custody.
If we who have survived the middle-class family and its doctors are not willing to act, then we are helping those who promote the bogus sciences of Social Darwinism and Eugenics, as well as guaranteeing that today’s children will be used in the same ways that we were.
Thank you for your comments, Nomadic. I wanted to reply sooner, and what you say is very meaningful. I think your words capture the spirit and thoughts of many who were harmed by the “mental health” system. At the same time, I recognize that my struggle of being harmed in the name of “help” is not how everyone views their experience with that system. I must also recognize that change does not happen overnight, or at all if aggressively forced (I know that because I know the effect that force and aggression trying to change me has had, and know the stories of many others). While anger is justified and feels good to express, aggressively demanding change only further isolates those who might otherwise become allies. To say it another way, the goal is not to get people who already agree with me to listen; rather the goal is to bend the ear of those who have been taught by the industry/mainstream media that opposition to the traditional system is “crazy” and forced treatment is the way to go. If the pegs refuse to fit, we just need to pound them in harder, instead of reshaping the holes, right?
Unfortunately, for the average person there is quite a jump in reasoning between “Lock up all the “crazies” they don’t know they are “ill”,” and “Listen to those of us who have been harmed by this broken system, we’ll tell you how you can save money, treat us with dignity and respect, fund choices that work for us, and have us back contributing positively in our communities instead of forever needing our communities resources”. Yes, we understand this. Still, getting other people there takes gentleness, time, and patience. Yes, I’d love to see the goal that the archaic and demented system we have in place now is gone for good.
Realistically though, I know that getting there can only happen if the common majority want it. The current system really does completely oppose common sense, and people begin to see that once they begin to hear our stories. People don’t often hear us when we yell, when we get too graphic, when we vehemently demand change. They definitely tend to listen when we speak from our hearts, without malice, and share gently what we have learned. I’ve found when I listen deeply to others, even those with very different points of view, I learn and my perspective gets wider. At the same time I find I get more opportunities to be heard, really heard, in a way that can make a difference.
In other words, what I’ve found is that creating change requires people who aren’t part of the movement to hear about these relatively new (to most) ideas- that our lives have value, our experiences have meaning, we can and do heal/recover. When I come from an aggressive place it feels good AND they don’t hear me- I have done nothing to foster change. So I try to separate my anger from what I can do to change things. I can feel the passion in your words, Nomadic. I can see the potential you have to create lasting change. In solidarity, JC.
Remarkable courage, Jen, thank you. Instigating change is extremely vulnerable-making. We have to trust the truth of our heart, without looking back, and without taking on and being distracted by the inevitable projections. When we overcome our own resistance to change, seems we encounter resistance in others, it can be maddening, tiring, and also guiding.
I make surrender part of the process, when I’m too tired or overwhelmed to do anything else. Eventually, I find my inspiration again, and this brings me, both, energy and opportunities, as well as renewed hope, and that changes my entire perception and emotional landscape. When we change ourselves, we change the world.
Thank you for your very powerful and inspiringly honest essay.
Yes! I so feel you Alex. Thank you for reading & for sharing your insight.
Yo Jen Constantine
I liked the Healing Voices Movie. I really liked the bits with you in it. Dan is great too.
Finding our way to stay well in a world that does its level best to convince us we can’t is an act of personal rebellion. and doing so we have already changed the world.
You have changed the world, maybe not enough for you, but you have.
When enough of us find our way to do that, and share what we’re doing, then it becomes revolution and the world is changes about us and we can stop the fight.
“Resistance to change” is no mystery, it is the very function [not a side effect] of bureacracy that runs the big show. see “Voltaires Bastards” for really a long version, or Seth Godin for a much shorter paragraph length version… http://sethgodin.typepad.com/seths_blog/2016/08/bureaucracy-success-and-the-status-quo.html
We can use all our energy fighting that or we can save some of it and use it to build the [better] world we want to be part of – and invite others to join us. The cool ones will, most of the rest will when they’re ready, and some won’t ever…
So right, Dave. Thanks for your insight & sharing the link. Very glad to hear you enjoyed the film, as well.
Rock on soul sister! Thank you so much for sharing this important epiphany. You are impacting many. Onward in the struggle,
Thank you, for all you ARE even more than for all you do. As we move onward in the struggle, may we always remember to be. Much love, soul brother.