Regarding the Impossibility of Recovery

Carrie Foulkes
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Stories are by their very nature linear. They begin, they progress, they end. But stories are not the same as life. Stories seek to make sense of life, to bring order to an otherwise overwhelming barrage of thoughts, feelings, events. Causes and effects are rarely so neatly paired as they are in the stories we tell. A happened, therefore B happened. What A or confluence of A’s led to my admittance to a New York psych ward in 2009? Or to my lupus diagnosis in 2011?

I wonder if they matter, the causes of things. Knowing that I fell down the stairs won’t help me get around with a broken leg. The mind is put only slightly at ease by the logic of consequences, but then the real questioning begins. So I have a broken leg because I fell down the stairs – now what?

I have my theories about my own set of A’s. The mind and body are intricately connected, despite the fact that different medical worlds exist for each of them. I do not think my suicidal mind and my suicidal body are separate things. Nor do I think that one necessarily caused the other. They may simply be different expressions of the same deep-seated trauma, the fear and loneliness and anger I felt as a child that never got voiced. So it grew its own voice, the pain. And sounds it out now in the echoic space of my cells, my thoughts, my being.

For so long I wanted to die because I couldn’t cope with my feelings. Either the pain was too much or my tools to deal with it were inadequate. Or both. I had no protection – everything hurt me. I’ve always been emotionally sensitive, with a propensity to feel overwhelmed. My sensory perceptions are disturbing at times: colours too bright, sounds too loud, smells overpowering. During my breakdown I felt too much all the time. I was living with my friends Elinor and Sachi; Elinor remembers finding me at home in tears on the sofa, saying I can’t go out, I can’t walk down the street, I can’t go on. I was emotionally raw, open, vulnerable. The world was callous, dangerous and desperately sad. The things I once appreciated in myself – my calm powers of observation, my fascination with the world, my friendships with others, my love of reading and writing – now seemed evidence of despicable privilege. My education, my everything, was undeserved, was wasted on me.

I remember being unable to stop crying. On the subway, on the sidewalk, eating cereal in the kitchen I shared with my two dear friends. I said to Sachi: This isn’t normal. I don’t think this is normal. I was fearful and dissociated. I lost my ability to connect, to communicate. I made plans to end it. I spent a month writing a letter, a manifesto, a rational and detailed memoir-cum-suicide note. A friend had just killed himself – I was unable to feign ignorance of the wide-reaching ripples of pain such an act set in motion. So I couldn’t in good conscience hang myself or jump in front of a train. It needed to appear at least somewhat accidental. I began drinking, drugging, mixing the two with increasing abandon.

Madison 5 probably wasn’t the worst of wards in the world. Its mustard yellow walls and locked doors would usually have oppressed me, but after an initial few days in bed, catatonic and unresponsive, I began to mix with a few of the other patients, even made some friends, and was welcomed into the social world of the psych ward. It was the greatest experience of equality (among patients) I’d ever had, but I never wanted to stay longer than I had to. My roommate was an older woman, Hispanic, who spoke to me late at night – sometimes it hurts so much in my heart, it feels like a knife is stabbing me, so I come here for a bit. My friends visited me with gifts of food. The smell of autumn on their chilly faces lingered when we hugged. My discharge was subject to my cooperation and compliance – I had to take the pills the doctors gave me. I did. I ticked their boxes.

Meds helped me, but only to an extent. They stabilised me to the point where I was able to challenge my thought processes, confront my history, start experimenting with different ways of telling my story. I’d not taken antidepressants or mood stabilisers before; I’d always felt wary of psychiatric drugs, felt that they would somehow make me NOT MYSELF. My thoughts, emotions and sensations were intrinsic parts of myself, I argued, so by drugging them I was afraid I’d become a lesser self, somehow inauthentic. A slightly hypocritical stance, considering the recklessness with which I’d consumed vast quantities of sedatives, painkillers, amphetamines and booze in the lead-up to my hospitalisation.

After a few months in the hospital and rehab, a well-meaning friend from my days in India sent me a copy of R D Laing’s The Politics of Experience. His view: that temporary psychosis on the spiritual path could be an important, enriching experience. My view: that any notion of madness as social construction or opportunity for self-exploration couldn’t help me get through the crisis I was in.

From someone staunchly against pharmaceutical intervention, I had become someone willing to try anything. But the process of trying different drugs was exhausting and at times terrifying. Finally, after six guinea pig months, a combination of Wellbutrin and several other drugs started to make a difference.

I wanted to know how I ended up with this broken leg.

I saw a psychotherapist, and a psychoanalyst. I learned that my personality disorder and my manic depression might have their roots in the irredeemable loss and conflict that formed the topography of my early life. The lack of stability, lack of dependability, led to deep insecurity. I’m afraid that everyone will leave me because, in the past, they did. So I don’t trust anyone, as closeness with a person equips him or her with the power to abandon me. I am better off alone.

Being on meds enabled me to look at the patterns of thinking that led to self-destructive behaviour. Once I’d mapped out the nature of my interpersonal relationships, I could begin challenging my habits, trying out new approaches, new ways of dealing with people and situations. I was fortunate to work with an insightful and open-minded psychiatrist, but there was a time and a place for that work. It could only do so much for me.

My first long-term relationship started in late 2010. I started getting physically ill around the same time. I was working two restaurant jobs, double shifts, so I wasn’t surprised to feel tired. All the time. But come the following summer, my face was peeling. I was feverish, prone to sudden exhaustion, and knew something was wrong. I went to several clinics. No one had answers. A dermatologist cut a small piece of skin from my cheek. Gave me two stitches. A few weeks later I first heard the word “lupus.”

A doctor told me it was likely drug-induced. That I had to come off the Wellbutrin immediately. I cried in his office. It had taken me so long to find something that worked, that put some sort of barrier or buffer between me and the despair. The abyss.

After numerous tests, it turned out my lupus wasn’t caused by the Wellbutrin, so I went back on it for another few years. I’ll never know whether the long list of psychiatric drugs that passed through my system precipitated my sickness or otherwise damaged me in some way.

Did I make myself ill by hating myself for too long? Lupus is an autoimmune disease after all. The body attacks itself.

When contemplating the aetiology of illness and the possibility of recovery, I’m frequently reminded that lupus has no cure, that bipolar disorder has no cure, that I must learn to live with them as I would learn to live with obnoxious neighbours. A crucial difference being that I can’t move elsewhere. My body is my body, my mind is my mind, and they are my only home. There is nowhere else to go.

At times I think of my body as a broken down car, my mind as a building on fire.

I just want to get out.

Do I ever wish my illness away? Yes, all the time. But who would I be without it? ‘Recovery’ implies return. The prefix ‘re-’ suggests that something from the past will occur again. Think ‘revert,’ ‘reactivate.’ A previous self can be reclaimed, a life disrupted can be resumed. But there is no way of going back to who you were before.

In his book The Wounded Storyteller, Arthur Frank suggests that there are three main types of illness story: the restitution narrative (recovery of lost health), the quest narrative (personal transformation, something to be gained from sickness) and the chaos narrative (anti-narrative commonly experienced by the chronically ill). Popular illness narratives tend to be of the restitution sort: I was living my life, I became sick, I got well and picked up where I left off. However, this idea that lost health will be restored, that ill health is a journey to wellness, doesn’t help someone with a chronic illness or disability to tell her own story, which may not have a (conventional) happy ending. The notion of ‘recovery’ can be damaging when a return to health is not guaranteed – when it may not even be possible.

What if recovery were considered a process rather than a destination? A person is continually evolving, is comprised of a constantly shifting constellation of relationships, memories, and stories that make up his sense of identity. A breakdown, a diagnosis, creates a violent break in the story we have been telling ourselves. This wasn’t supposed to happen. Our linear A – B – C narrative has dissolved into a jumble of sounds and symbols the meaning of which we are hard-pressed to guess.

When I feel myself slipping into familiar suicidal patterns, I try to focus on my creative work. Poems, drawings, collages. Little fragments of some vast and unnameable project. At the moment, I’m making pieces focusing on the circle and circularity. I meditate on a collage of a circular road, and bring my attention back to the present moment.

The idea that psychological problems originate solely in chemical imbalances in the brain overlooks the human story, the individual circumstances and nexus of experiences, ideas, and languages surrounding each person. I’ve said that knowing how you broke your leg won’t help you heal it, but it’ll certainly help you to avoid breaking it again. ‘Recovery’ is so often judged on external and economic grounds – are you able to work? Are you able to function? But while psychiatry may have temporarily saved my life, my biological beating-heart life, it did nothing for my soul. I find Laing’s work and that of others opposed to the medical model of mental illness more applicable to me now. I try to allow myself to fully experience and find meaning in my mental and physical illness – although I resist it on many levels, I know it has something to teach me.

The problem with psychiatry, with allopathic medicine in general, is that it is too specific and symptom-focused. The wider picture is ignored. I’m still looking for a holistic approach that takes into account my whole self: my physical and mental and emotional aspects, my 28 years’ worth of personal history, and my place within interconnected familial, political and cultural histories. An approach that supports me in my entirety.

For me, ‘recovery’ is accepting that I am not who I once was, that that person is gone. It is a grieving process for my lost self, the person I was before I became ill, and an embracing of a changed, perpetually emerging self. I am learning not to cling to hopes of health, of cure, of restoration, but to pay closer attention to the unique possibilities of the present as it unfolds. It is a process of continually rewriting my story, of creating a new non-linear narrative. It is not without darkness.

In Japanese, the word kintsugi means ‘to mend with gold.’ A broken ceramic vase is repaired rather than discarded. The repairs themselves are beautiful and intentionally made visible. Perhaps medicine can learn from this concept and help people to understand that healing is not a matter of disguising their cracks, but accepting that the cracks are a part of who they are. To strive for health but to appreciate that damage and disease are marks made by life. To realise that although you can sometimes put things back together, they will never be the same. And to honour the enduring worth of broken things.

The Circular Road – C. Foulkes
The Circular Road – C. Foulkes

 

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Carrie Foulkes
Carrie Foulkes is an interdisciplinary poet and artist based in London, England. Her practice-based research explores themes of interconnectivity, non-linearity and chance through various media including collage and book arts. She is currently learning about bees and working for the Natural Beekeeping Trust, a charity which advocates a bee-centered, treatment-free approach to beekeeping.

29 COMMENTS

  1. You have a lot of wisdom, Carrie.

    The popular “restitution narrative” stories aren’t really a reflection of who we are as human beings. They are a prop to cling to for those who are too afraid to truly see that we are inevitably changed by all we experience. There never can be a ‘return to the health there was prior to becoming unwell’ as we are changed, we have much to grieve as we inevitably lost something we had before we became unwell, even if it is losing the hopes and dreams for our future that our illness or trauma prevented us from achieving.

    There is only “process”, and change. A continual ongoing process of movement, sometimes a step forward and two back, but still, movement. And – change. The only true inevitable is change. And, we need to grieve what was before we can move on. Loss is inevitable.

    Sometimes just managing to stay in the moment by being able to focus on some small thing in now – that might be the only way of keeping on going but – that, in the end, is what life and “recovery” is about. Just that keeping on going. Where to, exactly, we can never really know.

    You show a lot of wisdom and maturity having grasped that already. Far too many people never learn that there is never any ‘going back to how we were before something happened’. Far too many people can’t face the pain of recognising and owning the pain of loss yet, it’s all our emotions, including the painful ones, that make us human.

    Beautifully written. Thank you.

  2. Beautifully written exploration of personal truth. I do believe that regardless of any diagnosis or prognosis, we have the hope of inner peace, if that were to be a desired goal. Struggling with acceptance of what is can be a powerful healing journey, in and of itself. Thank you for sharing so openly your humanity, that is a gift.

  3. Beautifully written-and heart felt.
    I would suggest you amend your statement about psychiatry and allopathic medicine to include “Some”.
    You seem to be to deep a thinker to be positing reductionistic perspectives.
    We never are who we were. We are always missing and yearning.

    Thank you for the share.

    TM

  4. Carrie,

    I liked your story and agree strongly that most psychiatric models of “disorders” and “recovery” totally ignore context and environment as important shapers of human behavior and adaptation.

    I agree with your criticism of Laing’s notion of psychosis as transformative or a possibility for self-exploration. I did not find this either; rather experiencing psychotic states as a life-threatening nightmare to be escaped from at any cost possible.

    Your writing touched upon a point I often feel… that “recovery” is a misnomer for getting better from an emotional breakdown. It presumes that a state of normality of health predominated at some point in a person’s life, followed by suddenly becoming “ill”… followed by (hopefully) a return to the original state of functioning. So, point A, then point B, then point A. Of course this model would be hopelessly simplistic. Better words for what people strive for are maturation, wellbeing, personal development, safety, fulfillment, salvation, deliverance. Not recovery, which is a covert Trojan horse word of the medical model.

    I have to criticize this:

    “When contemplating the aetiology of illness and the possibility of recovery, I’m frequently reminded that lupus has no cure, that bipolar disorder has no cure, that I must learn to live with them as I would learn to live with obnoxious neighbours.”

    I am not sure if you believe this lie (that bipolar disorder has no cure), or whether you are simply recalling what others have told you – in any case, this is false on multiple levels… it has never been proven that “bipolar disorder” has no cure. The problems with this notion are myriad… on one level, I could argue convincingly that there is no valid discrete condition called bipolar disorder, as numerous writers have powerfully done for “schizophrenia” (e.g. Bentall, Read, Kirk, Poland, Boyle, Mancuso). So, of course a nonexistent disease cannot have a cure… there is no bipolar disorder to compare to lupus.

    On another level, manic states occurring along a continuum between more severe psychotic experiences (often mislabeled “schizophrenia”) and less severe psychotic states (often mislabeled “borderline personality disorder”) are real for those who experience them… but if you speak to skilled psychodynamic therapists who’ve worked with people having these experiences (I have spoken to a number of these who’ve worked with many people who were labeled “bipolar”), those people by and large have gotten better, and in some cases never had manic episodes again. So freedom or “cure” (an inappropriately medical word) for people supposedly having “bipolar” states is quite possible… contrary to what you have been told.

    I have had psychotic and borderline experiences myself and am speaking from experience that they are transformable / “curable”, in the inappropriately medical language. So, I’m not talking down to you. I encourage you to join me in refuting the notion of the incurability of these “disorders”… and to not even believe in the validity of said “disorders” as medical conditions… as hopefully you already do (not).

  5. Thanks, Carrie! First, I want to “second” ALL the comments above. And here’s my 2cents worth: Try reading some stuff from the Dalai Lama. He’s got a lot of simple, and easy-to-read books that make a lot of sense to me. They are sometimes challenging, but always also very encouraging. Because the reality is, that SOMEDAY, hopefully far, far into the future, we will ALL get old, get sick, and DIE. You’re welcome to go as soon as you choose, but I’m so glad you chose instead beekeeping. Even if you had to go through the hell of psych drugs and psych wards, first…. What helped me keep going, years ago, now, was the idea that somewhere inside ALL of us, is a WHOLE, HEALTHY, HAPPY human BEING. We are Human BEINGS, not “human doings”. It’s WHO WE ARE, *not* “what we do”, that truly defines us….. Thanks again….
    (Yes, I really am trying to be helpful here. But if you don’t find my words helpful, then simply ignore them, or see them as guides for what does NOT work for you…. I’m not too attached to my words. After all, I talk to the wind, my words are all carried away…. Get it? *CARRIEd away*?…..>grin</

  6. I have heard the analogy that people, like plants that need the right sun, water, and soil, need the right social, emotional environment to do well. I can see that my beginnings with parents who were stressed, emotionally closed off to me, one schizophrenic, had a lot to do with my experience of a lifetime of anxiety. I sometimes feel that even now if I could find a way to construct a good social environment, that I could make progress to feeling better, but I see that as impossible. My experience with psychotherapy is that if you find one that uses a person to person approach, it is a lot more helpful than one that uses the standard professional advice giver approach, which is most of them.

  7. I appreciate your insightful article. It sounds like you are your own best healing resource.

    Has anyone ever suggested that you might have Lyme disease? It’s just a thought that occurred to me based on the information you have shared. Because Lyme disease has its own socio-political morass to navigate through, many people are misdiagnosed. I understand that lupus is a fairly common misdiagnosis for Lyme. Lyme is considered by some to be “The New Great Imitator,” the successor to the original “Great Imitator,” syphilis. Both are caused by spirochetes (bacteria) and can affect nearly every system of the body, including the brain (nervous system) and the skin.

    Lyme is sometimes tricky to diagnose. Many doctors are poorly informed and even misinformed, so if you are interested, your best bet is to seek out a “Lyme Literate Doctor.” I recommend the ILADS (International Lyme and Associated Diseases Society) website as a good place to learn about Lyme and to find a Lyme Literate Doctor. Here links to the ILADS home page, to an ILADS brochure “Psychiatric Lyme” and to their doctor referral page:
    http://www.ilads.org/
    http://www.ilads.org/lyme/lyme-brochure-psych-2014.pdf
    http://ilads.org/ilads_media/physician-referral/

    I wish you all the best, wherever your journey takes you!

  8. I’m not sure exactly who you’re speaking to, “canary”,. but yes, I DO have Lyme disease. I guess. I had a period of “camping”/homelessness in 2009 – 2012, and YES, I did get a tick or 2…. Couple years ago, my knew swelled up so big, I literally couldn’t bend it, or walk. Had to get over 100cc of fluid drained, and got a 30+-day antibiotic…. Also had more minor swelling in both wrists….. And, YES, I COULD have had Lyme disease years earlier…. It’s a thought. And, *THANK-YOU* for the links, so we can ALL maybe learn something….

  9. Thank you, Carrie. There is so much to absorb and consider in your story that I am going to bookmark it and reread it later.

    In my own very long experience with depression and suicidality, I have figured out that I cannot take advantage of talk therapy until my brain is working right. Meds help that to happen. For me, it takes both.

    Again, thank you.

    Pam

  10. Carrie, your article touched me insofar as you struck a tender cord about how we can never return to being who we once were; “recovery” is a misnomer, in that respect. I have had my own issues with traditional methods of recovery and have gone the spiritual route of addressing my problems. Oftentimes, psychiatry relegates spirituality to the desperate among us who have no other way of coping, but this is absolutely not true. I have found many alternate methods for recovery on my own which have worked, and I would like to share them with you.

    Despite a difficult life of taking psychotropic medication for 38 years and being hospitalized nine times in 31 years, I have been blessed through yoga and an experience of awakening to my inner self. This is what keeps me going, the memory of a unified state, that I use as a backdrop for handling the vicissitudes of life. There are many resources available to support the struggle and substantiate a new way of handling “recovery.” The human potential movement has a plethora of books and programs that can fulfill you and give you the sense of self that traditional recovery methods may not be able to provide. I recommend my favorite online programming at http://www.gaia.com/.

    There is also a CD program from SoundsTrue.com you might want to look into for inspiration about getting in touch with your innate perfection, which Dr. Candace Pert, the author, says is your birthright: “To Feel Go(o)d: The Science and Spirit of Bliss.” Dr. Pert is a psychopharmacologist, neuropeptide researcher and author of the bestselling “Molecules of Emotion.”

    I would also suggest a supplement that has really cured bipolars and depressives, known as “EmpowerPlus” which restores neurochemistry to its homeostatic state before the onset of problems. There are dozens of success stories of people who got off their meds and whose lives were turned around by EmpowerPlus. Here is the link: http://www.truehope.com/.

    One must never lose hope in this battle. I wish you all success in your journey.

  11. Over the years, I’ve learned to resent the word recovery. Recovery feels like going backwards to whoever I was before. That idea that I could somehow be fixed or go back to the person other people thought I had been became this destructive force in my life… A self fulfilling series of prophecies because you can’t go back. Living with mental illness isn’t about recovering; it’s about learning to live with mental illness, but since that isn’t part of the medical model or the media characterization, actually doing it means fumbling through and pretending for all the peanut crunching crowd. Sometimes I feel like I’m the only one left out of those who struggled with me, and for a long time, every day was a choice; an active decision to continue breathing for one more day… I felt like I was in this never-ending roundabout of slow self destruction punctuated by more lethal deliberation. It was like an undertow… No one can give you a reason to live. You have to find it for yourself. Until you do, try simple things. I used to tell myself I had to get out of bed to care for the turtle or he would die. I don’t know how long I did that. I didn’t notice when I stopped either. Trying to live for the big perspective was just too overwhelming… Too many emotions. Too much chaos. Too many possibilities and impending disasters. I could get out of bed for a turtle. I learned to make compromises with myself and to creatively overcome things.
    And I’ve been sitting on an open bottle of lotion on my newly cleaned sheets the whole time I’ve been writing this… Argh. Anyway, if I can help, just ask.

    • “….Argh. Anyway, if I can help, just ask”…. <—that's what you just said, and I'm retyping it, to emphasize your words. You know, "acidpop5", I've also read most of your OTHER comments here – and I can totally understand what you're saying, and I hear you loud and clear. Reading about YOU, writing about YOUR experience(s), helps ME. THANK-YOU. Keep doing what you do, and keep posting here on MIA. You've helped me, by your sharing, and letting me know that what I think is echoed by the thoughts and words of others like yourself. THANKS! Happy April! ~B./

    • I agree with you totally about this “recovery” business. It never made sense to me and I refuse to use the word in reference to myself or anyone else. Instead I use the words healing and well-being. You can never go back . This is the same with trauma. People talk about recovering from trauma but that’s an impossibility. You can never go back to the day before you experienced the trauma and take up from there. You always have the garbage to deal with that the trauma handed you. But…….you can transcend the trauma if you can find a way to give meaning to what it was that happened to you. You can never recovery from trauma but you can transcend it.

      I didn’t have a turtle but I did have a wonderful cat that I got up and took care of each day. On my bad days now I have another cat who puts his cheek against mine and then pats me on my cheek with one of his front paws. He is what keeps me going.

  12. Yes, “Stories seek to make sense of life.”

    I for one do not accept the Recovery story. I see it as just a way of blaming the victim, a further layer of abuse added on top of other abuses.

    And yes, like R. D. Laing is suggesting, sometimes crackups may be unavoidable and necessary.

    But where I see the way forwards is in political and legal activism to bring about social justice.

    Today the middle-class family exploits and abuses children, and the child ends up on alcohol, drugs, or psych meds, and they end up in Recovery and Seeking Salvation, if not in jail or living under a bridge.

    So the remedy to all of these things are not in the psychiatric hospital, or even on the psychotherapist’s couch, they are in the political and legal arena.

    Nomadic
    http://freedomtoexpress.freeforums.org/index.php