Chapter Twenty-Seven: Reignition

Laura Delano
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Silent hours unfolded as I devoured the words, a symphonic consciousness crescendoing as door after door of new awareness opened inside of me.  It was May, 2010, and I was alone in a Vermont hotel room, as I’d let my parents know they should go on without me to meet my sister and her friends for dinner to celebrate the end of their junior year in college.  Skipping a social event was nothing new to me by this point; in fact, my family had grown to expect it.  The inevitable, “How have you been?  What are you doing in life?” had become too much to bear in social situations, those words a stab in the gut, their sharp ferocity leaving me aching for hours afterwards.  The only answers I had to offer were entirely tied into my identity as a person with mental illness— Bipolar disorder and Borderline personality disorder, specifically.  Indeed, it had become all I was.

How have I been, you ask?  You’d really like to know? 

I have not been well.  In fact, over the last ten years, I’ve been getting progressively worse, and these last four years in particular have sent me further down than I ever thought was humanly possible.  In this time, I’ve thought about dying on an almost daily basis, the thoughts invading me with the force of a powerful army.  For whatever unfortunate reason, I failed at trying to kill myself a year and a half ago, and I’ve been stuck in the same life ever since.  To be honest, the only thing that’s kept me going are these thoughts of death, which I know is waiting patiently for me when I finally decide life is too much, and that my mental illness is too severe.

I’m currently on six psychiatric medications, each of which I’m told serves a very important purpose— Lithium for my mania, Lamictal for mood stabilization, Abilify for my mania and mixed episodes, Effexor for my depression, Ativan for my anxiety and to help me sleep, and Seroquel when I’m overwhelmed with thoughts of suicide and need to sedate myself quickly.  They’ve never worked, ever, and I’ve been told that I’m very treatment resistant.  Although they keep upping my doses, I’ve only gotten worse.

I don’t remember what it is like to not be medicated, to not have to pour the pills out into the palm of my hand every morning and every night and swallow them down, a residue of bitterness left at the back of my throat.  I’ve been on them consistently for ten years, and on and off for three years before that, so I have had a relationship with them since the age of fourteen.  I’d imagine I’d feel naked if I went anywhere without them.  They have become my security blanket, although I’m no longer sure what they’re keeping me safe from.

So, you’d like to know what I’m doing in my life?  Well, I went inpatient on a locked psychiatric unit in New York back in February of this year after coming really close to killing myself.  I guess you could say I was glad I asked for help instead of going through with the suicide, so that I could give life another shot, although there are moments when I’m not so sure.  That hospital discharged me to a substance abuse day program at the same Hospital on the Hill I went to back in 2008, up in the Boston area, after my suicide attempt. That program didn’t go so well, and I was kindly escorted by hospital security back to that locked unit, where I spent a little time.

Since leaving that unit, I’ve been spending my days— five days a week, usually from 9AM until 4PM— at the hospital’s Intensive Outpatient Program for Borderline personality disorder.  I go to groups, individual therapy, and to the occasional meeting with my treatment team, which consists of seven doctors, social workers, and psychologists who meet about me first and then invite me join them afterwards so that they can tell me what I need, since I have no idea what that is, myself.  It’s always hard to wait patiently on the sofa beneath the old mahogany paneled walls in the hallway of the Administration Building, staring at that closed door, knowing that they’re talking about me in there, but I’ve been told this program is the best in the country for treating Borderline personality disorder, so who am I to say anything?

I’ve been staying with my aunt and uncle in the suburbs of Boston since leaving the inpatient unit because I can’t handle living alone.  I dread the nights, when I am faced with myself, my racing thoughts, and my profound self-hatred, and I watch hour upon hour of Law & Order or South Park on my laptop until my Ativan carries me into deep, dreamless sleep.  Waking up every morning to shower, dress, and go to treatment is a challenging task, because I’m still not sure I really see a point to all of this, since I’ll have these issues for the rest of my life.  Other than my fellow patients at treatment, and the people I see nightly at meetings I’m attending to help me stay sober, I have no friends, because it’s too exhausting to put the front up that I’m anywhere near being normal.

I’ve never really thought about working towards a career, as I stopped thinking I had it in me to be successful long ago; it also didn’t help that doctors have always told me to be sure to set “realistic expectations” for myself, given the severity of my Bipolar disorder.  I’ve haven’t thought about getting into a healthy relationship with a guy because I stopped thinking I deserved it a long time ago, and when I look around at people my age who are getting married, having children, excelling at work, and settling into homes, I am utterly perplexed.  I sometimes wonder if I’m really an alien among these healthy, happy, functioning human beings, as I am constantly disoriented and profoundly confused by this thing called life.

Is that a good enough answer to your question?

With that as my truth— this massive secret of who I really was— I couldn’t bear to pretend any more, to diligently weave fabrications with acute precision, vigilant about getting straight which story I told to whom, and when.  The contrast between the person most of the outside world probably saw me as and the person known by my family and by the countless psychiatrists, psychologists, social workers, and mental health workers I’d come to know over the decade I’d spent in shrink’s offices, day programs, partial hospital programs, and locked psych wards, was too stark.  Tonight, however, these concerns hadn’t even crossed my mind.  Alone, hidden underneath my usual baggy sweatpants and hooded sweatshirt, I had stayed behind for a very different reason.  I simply couldn’t stop reading.

In the past few years, the vast majority of the books I’d read were of the young adult genre, and the only times I’d read at all were during stays on psych wards, my debilitated concentration coming together just enough to make a meager attempt here and there at breaking up the monotony of being on a locked ward.  My hands hadn’t held a piece of non-fiction since college, other than a failed attempt at Malcolm Gladwell’s The Tipping Point while on the Short Term Unit of the Hospital on the Hill in 2008.  I simply couldn’t absorb the words, my eyes going back to the beginning of each paragraph three times before I could move on to the next.  And here I was, caressing the red dustcover, while my eyes, hungry fiends after years of starvation, digested each and every word of this book I’d accidentally discovered earlier that afternoon.

I’d been wandering around downtown, baffled by the normality and carefree happiness that was everywhere— families excited for summer and proud of their accomplished college grads, yellow labs in bandanas panting in the heat, children in matching Patagonia shorts.  When I chose to go out in public, which rarely happened anymore, I couldn’t help but analyze the humanity I’d become so separated from, studying it as if through a glass observation window, fantasizing that one day I’d get so good at pretending I’d maybe have a shot at becoming like everyone else.

At the sight of a bookstore on the next block, my heart flittered; rooms of books were one of the few spaces that provided a temporary sense of relief and escape.  I’d trace the spines of soft covers with the tips of my fingers, pulling them out here and there to push my thumb through their pages and inhale the sharp smell of crisp new paper, and imagine myself reading them at home in a comfy chair by a fire, a warm blanket on my lap, a cup of tea at my side.  This scene hadn’t existed beyond the confines of my mind in a long time, and I wasn’t sure it ever would, but just the thought of it was enough to let me sigh a deep sigh.

Perusing the shelves, I came to the newly released books, which lay flat on an unfinished cedar display shelf, their covers shining bright under fluorescent lights.  As my eyes scanned the images, I locked eyes with a face looking back at me.  His eyes peeked out from just above the author’s name, and I was sure I saw pain in them.  The top of his bald head was separated by dotted lines, which carved the skin up into designated sections, each labeled with one word.  My jaw dropped as I read them.  I knew them well, better than most, probably, and some of them I said aloud to myself every day.

Tegretol, Lamictal, Prozac, Klonopin, Wellbutrin, Risperdal, Zyprexa, Xanax, Lithium, Ritalin. 

Pharmaceutical drug names for medications that treat mental illness, two of which I had.

What is this book?  I thought to myself, heart pounding, as time slowed to a halt around me.  Everything on my visual periphery fell away, until the book was the only thing left in my line of sight.  I felt a powerful sense that this was predetermined, that this was meant to happen.  I hadn’t felt something like this in a long time.

These words— these accumulations of letters arranged strategically by marketing divisions of pharmaceutical companies— marked the destiny of this man, whose eyes were searching for mine, and I realized in a profound moment that I was looking at myself.  I now understood the ache I saw, for I had it too, and eight of these ten drugs— two of them in my blood stream in that very moment— had been shaping my own fate since the age of fourteen.  I had no idea what the book was about, but without a thought, I had it in my hand, got into the check out line, paid, and went straight back to the hotel.

A few weeks earlier, I’d mustered up any inner confidence I could find to raise the issue of coming off my psychiatric medications with my psychopharmacologist, Ben, who was one of the doctors on my treatment team.  Although he initially pushed back, he was willing to listen to me.  I told him that since getting sober, my life on the outside had gotten a little more manageable and that I sensed a slight forward momentum, something I hadn’t felt in as long as I could remember.  Although I still had no idea of who I was and loathed the person I saw in the mirror, there was something inside of me that had ignited, something deep in my gut that told me if I was ever to have a shot at putting together the scattered pieces of who I was, I had to come off of my medications.  I was tired of wondering, “Is it me, or my meds?” any time I thought a thought, or felt a feeling.  I was tired of feeling like I was turning my agency over to these inanimate pills that had ruled my life for over a decade.  I was tired of the side effects, of the lethargy during the day and the insomnia at night, of the sense that I was separated from the world around me and completely disconnected from any sense of my self.

I simply couldn’t go on this way any longer, and had become ready to begin what I was sure would be the most difficult journey I would ever face.  I was ready to discover who I really was, beneath the stacks of prescription sheets that had been ripped off and handed to me and the tens of thousands of tiny capsules and pills that had dissolved into my bloodstream over all those years and shaped me into the person I had become— a zombie, and a total stranger to myself.

Just weeks after this conversation with Ben, who had told me gently that we could reassess the topic in a month’s time, I was holding a book that carried a message I had been completely unaware of until that very moment.  I had accidentally discovered Anatomy of an Epidemic, and it was about to transform the way I saw myself, my Bipolar disorder, my relationship to psychiatry, and my future.

 

26 COMMENTS

  1. Laura,
    What a powerful story! I identify with so much of what you have written – who are we without all these medications? There was a time when I didn’t take any medications at all and somehow I muddled through my life. And now that I have the knowledge I do about my illness and the coping skills I’ve learned, I know I could make it without meds, or at least do my very best to try to do so, and that’s what I want. I’m dragging my psychiatrist along by the neck because he doesn’t want to let go of the idea that my illness is so “brittle” and that I can’t make it without meds, but I’m going to get there and you’ve really inspired me. Thank you! I’m your friend in the grand scheme of things, so remember that.
    All the best,
    Catherine

  2. Wow. Oh wow. Isn’t it astounding to think that these hospitals and doctors and treatment centers are on this very day giving another bright, beautiful young girl a lifelong sentence of bipolar with borderline personality disorder?

    I was a Sophomore in college when I got my bipolar with borderline personality disorder. I was diagnosed at McLean; I went from no drug history to a three drug regimen overnight. My parents were informed I had a lifelong illness with no known cure. My dad was convinced; my mom had severe reservations. I don’t know what I thought, didn’t the doctors know better than me? It did not seem to matter to me what I thought. So that plus the drugs were my constant enduring reality for my twenties. Sound familiar?

    After a certain amount of time passed which I cannot pin down in quantitative terms, I know longer thought about health or wellness. I was in my routine and living my “normal”.

    My mom encouraged me to go on a religious pilgrimage to India in January of 2011 with other Catholics. The first week would be a week-long silent retreat at the Divine Retreat Centre (the largest Catholic retreat center in the world) in Potta. The next two weeks would be spent traveling five different cities around India visiting various churches and shrines of Saints in addition to regular tourist fare.

    I didn’t want to go (why spend so much time around holy types who tell you Jesus can heal your ills?). My psychiatrist was my umbilical cord, so like a good patient I asked her what I should do. She said, “I support you in your decision, either way.” I didn’t think I would go. (It didn’t matter that the visa, the plane, the trip had been long paid for… I didn’t feel like it.) I had ordered a supplement through the mail upon my shrink’s recommendation a week prior to leaving. A strange thing came in the mail with the supplement: a complimentary full-size bar of soap. It was a brand I didn’t recognize, “Pears”, so I looked on the box for where it was from, and what do you know? Made in India.

    This, a bar of soap, convinced me to take a pilgrimage to India. My doc told me to double my Abilify dose to help me along the way (in addition, of course, to the Klonopin, Adderall, Prozac, Metformin, Synthroid, Cortef, hormone pills, and many, many supplements).

    In India, a day after the week-long retreat we were introduced to a layman named Anthony. He did not speak much English. He spoke the native dialect of Kerala, Malayalam. He was a working-class older man, married with grown kids, who once had been a hard drug addict. Through the grace of God, he had converted his life. He now knew his bible, lived his faith, and spent several hours a day in prayer. Through prayer, he would receive messages (or inner locutions) to give out to everyone of us in the group. He could give names, dates, unspoken dreams, promises/prayers made to God, motives of family members back home, etc. He mostly told us the difficult things we did not readily want to hear: the aspects of our lives that could be improved.

    After telling me some absolutely true details of my life, he told me the heresy of heresies, “There is nothing wrong with you.” I informed him that I was severely bipolar. He took my answer and started praying for a message to give me. He came back with, “No, there is nothing wrong with you.”

    I came back in early February of 2011. I started tapering (with no formal support, no tapering guides, no internet research) on March 9, 2011, Ash Wednesday in the Catholic calendar. I got rid of everything. No thyroid problem (originally triggered from Lithium), no metabolic problem (cautionary for antipsychotic use), no hormonal imbalance, no nutritional problems, no allergies, no more hand trembling, no pills of any kind whatsoever. The Klonopin was the hardest and my last dose was in the end of June 2011.

    I have exactly one year of sobriety this month after twelve heavily medicated years of existential horror. It has been a blessed but sometimes angry year. I went back to college last Fall and am doing well in my current summer classes. I have my volunteer work. I am running (tomorrow wake up at 6) and in training for the half-marathon in October. I have significantly improved relations with my family and new friends. I have a true faith life. My life is full.

    I had thought I was alone. I believed that nobody could be as duped as I had been duped. Nobody else could down $200,000 in pills on a behavioral illness. Nobody else could have traveled (I went to five different states) to so many medical clinics and consulted so many doctors without ever having a medical disease.

    I discovered Whitaker’s book in February. I discovered your Occupy APA speech in March as the item that drew me to this MIA site for the first time. I was not alone.

    Your voice as a writer has, most especially, helped me to process and understand my experiences. You have helped me. Thank you so much, Laura! It is with such joy that I write you now. I will be looking up Joanna Moncrief. I still have much to learn from you and from MIA.

    I’m so grateful for my relative youth, my health, and my life. I have new goals and aspirations. I’m also looking forward to following the wonderful things you do with your life in advocacy.

    Your friend in craziness through the first decade of the 21st century and in wellness now,
    Emily

  3. These people are legalized drug pushers.

    “I’m currently on six psychiatric medications, each of which I’m told serves a very important purpose— Lithium for my mania, Lamictal for mood stabilization, Abilify for my mania and mixed episodes, Effexor for my depression, Ativan for my anxiety and to help me sleep.”

    I was always struck by how against street drugs the doctors in my son’s programs were, while at the same time they were writing prescriptions for mind and body altering substances.

    Thanks for telling your story.

  4. Your story is inspirational, thank you for sharing. To echo what others have said, your writing is amazing. And I am so glad that you and so many others found Anatomy of an Epidemic. It is having a profound effect for the better on so many people. Your experience and that of others responding to your story remind me of that old saying, “The truth shall set you free!” If I were infinitely rich I’d buy hundreds of copies of this book and I’d stand on the street corners and give them away to anyone who would take a copy!

  5. Lauren, I have read your journey with rapt attention. I am so glad that you have come through this nightmare and are now a happy contributing member of society.

    That you are now speaking out and helping others speaks volumes for the type of person you have become.

    Thank you.

  6. It has always astounded me that a person could be receiving “treatment” for so long, be clearly deteriorating, and yet have the “professionals” continue to be somehow fully convinced that the “treatment” was helpful in some mysterious way. I’ve heard someone say, “She’s like this on the meds – think of what she’d look like OFF them!” But I’ve seen dozens of situations, maybe in the hundreds, where the person was no worse off and often far better off when they stopped.

    If we went to a doctor with a sore knee, and a month or two later, despite treatment, the knee still hurt, was now swollen, back pain had developed, we’re now using crutches, have severe headaches, and are seriously depressed, even the most credulous among us would quickly conclude that THIS TREATMENT IS NOT WORKING! And yet somehow, psychiatric treatment is allowed to fail without blame. Anything good that happens is because of the drug. Anything bad that happens is because of the “disease.”

    Laura, it was such a pleasure to meet you in Philadelphia and hear you speak, and I so appreciate you sharing your story. I totally agree with you and Emily’s Indian holy man – “There is nothing wrong with you.” There’s a lot wrong with a system that identifies any distress as being a disease. But even within the confines of its own warped belief system, shouldn’t psychiatry be able to acknowledge when a treatment isn’t helping? Apparently, such a thing never happens.

    Thanks to you for sharing and to Bob’s book for helping make that possible!

    —- Steve

  7. Laura, thank you for having the courage to tell such a courageous story.

    Like you my life also changed when I read Anatomy of an Epidemic. I was however unable to obtain any help or support for me to wean myself of the med’s, and in fact lost all the support I had ever had. I spent a long time wondering if I had made the right decision and there are times when I still think that. I totally understand people who do not do it. In many cases I do not think it is because they do not know the truth, but rather because of what they will lose if they do. It is also incredibly hard to wean off med’s when you are on high dosages and cannot get lower dosage tablets prescribed.

    I entered the mental health system some 20 years ago, when I left the most abusive home possible. Rather than consider that my problems were due to decades of abuse, they instead labelled me with brain based diseases. I should add my main diagnosis was actually PTSD, but the treatment of choice was cocktails of medication. I was told that PTSD was caused by an underlying genetic condition, and the stress was just the icing on the cake!! But of course once you have one diagnosis, another has to come along too, and in the end I had over 20 diagnoses, and most of them ALL at the same time!!

    Any therapy I was offered was very strict Cognitive Behavioural Therapy, which said I had to ignore my past and just think properly. Problem was one can only think what they have experienced, and I had nothing to think positively about. I was homeless, and the only way I had a place to even sleep was in mental health group homes.

    When I finally managed to find my own accommodation I had no one in my life. I had left my whole life, to leave the abuse and no is safe to be in contact with. My name has had to be changed. I also have a total distrust of people, due primarily to the abuse and then the subsequent systems abuse, which simply reinforced everything I had experienced as a child.

    When I raised the prospect of going off medication, in fact I raised the prospect of lowering the doses, not going off; I thought lowering was safer, I was told I would lose all support. I had workers who visited me regularly, who helped with many things. There were drop in centres I could attend, etc. I had a psychiatrist, psychologist and family doctor. The ONLY people who even knew I was alive were the professionals who treated me. And I lost them all. I tried to hide the fact that I was going off the med’s, but my physical changes, weight loss (the gain caused my Olanzapine) and my being awake, was not able to be hidden. In the end I was kicked out from all of them. Even the family doctor refused to have anything to do with me. I have been banned from every drop in centre in my state, as I could communicate with other people!!

    On the one hand I know that going off the med’s was the best thing I ever did, but equally there are times when I question it. If I had family support or even friends it would be different. If I lived in a country that had survivor groups it might be possible. I have no such thing. And of course I still have the lifetime legacy of the abuse I suffer. But now that I am alone and of course awake I am finding other things. I now have a massage every week, instead of therapy or medication!! And that has been the most healing thing I ever did. I struggled with it at first and had to push myself to go, but I now long for it, and plan my week around it. I am doing voluntary work, looking for paid work and planning on going back to school. I am even beginning to establish relationships with some people at the place I do voluntary work.

    I think on the one hand the belief that these drugs will work is huge. But there is also a large group of people who have nothing but the system and losing that is simply way too scary. I have communicated with many of them online. They know the truth, but the fear of the loss is too great. We do not develop these problems for no reason and many of us ended up in the system due to abuse. We went looking for help and only got more abuse. And then they wonder why we didn’t want to live.

    While my story is very different I relate very strongly with some things you write about. The doctors telling me I can’t do anything and to not have hopes or goals. Then telling me I was silly for wanting to die??!! Those things have never quite made sense to me. How it is they cannot comprehend that they make us want to die is beyond me. I was constantly told I had a really bad case and was many times told I was treatment resistant. Not aware of anyone who is not treatment resistant? Can’t treat something that does not exist!! Still trying to work out how a drug that supposedly stopped voices in the head (antipsychotics) can supposedly treat almost every other condition that exists!! And of course the wonderful team meetings in which a bunch of so called experts talk about me, without me, and then tell me what I need to do, to fix myself.

    Diagnosis for me is a double edge sword. I certainly do not agree with the basis of it and know full well it does not exist. Equally though I long for something to explain the pain and trauma that I have been through, although I know better than anyone that a word labelling me as defective can’t do that. In fact no word can do that. At present though I require the diagnosis in order to get government benefits and without it, I would be dead. Sad the levels a person has to go to, in order to eat.

    • I love that idea – “Treatment resistant depression.” In what other profession can you completely fail to help, actually make things worse, and blame the condition you’re supposed to be helping for your failure? What a great deal! What would we say to the mechanic who charged us $500 for not fixing our fuel injection system, and when we asked why the car didn’t work any better, were told that we had “repair resistant fuel injectors?”

      What a racket it is! Belinda, I am so sorry you didn’t have the support you needed to recover, and I admire you for the incredible strength and courage you have shown in getting away despite the lack of support. That they would BAN you from receiving any kind of support just because you didn’t do what they wanted is quite beyond the pale. I am so happy for you that you’ve found a different way forward. Remember that there are lots of us out here who believe in you and you can find us if you look. It’s so tough to get over childhood abuse – I work with abuse victims every day and I know from experience! But it can be done, and you sound like a very tough survivor and I am sure you will make it.

      Thanks for sharing your story!

      — Steve

  8. Laura,

    I am reading this post and the comments with tears rolling down my face. I am, to put it bluntly, scared shitless. I don’t know what to do anymore. I want to be a good mother to my two beautiful children. I want to be a good wife to my sweet husband who I have put way too many times through the wringer. I was diagnosed with depression/ADHD/anxiety in twenties, and am taking Prozac, Wellbutrin, and Adderall, and Klonopin for sleep (could be worse, right??!). My son is almost 9, my daughter is 2, and I had a horrifying postpartum depression after having her that still seems to crop up way more than I care to admit. These drugs did help me then, that’s certain–but what is less clear is what is happening now, why my gut is in an uproar, why I feel so heavy? My psychiatrist is wonderful but sounds like Ben–he thinks I’ll go off the deep end without the medication. I have over the past 2 months cut my klonopin down from 1 mg to .5, and that has been harder than I can convey, but I just felt like it was making me worse. So where to go from here? How do you find support in this? I have to admit I want to be able to believe in the “expert” who knows what is best for me, outside of myself, because the idea that “they” don’t know is utterly terrifying. That leaves me then, doesn’t it? Not the person identified as “sick”, but me, whoever she is. And right now I don’t know who that is.