Reconsidered: Confronting The Possibility Of Recovery From Serious Mental
by Elizabeth Richter
As I drove around the community college campus, seeking the main administration building, I noticed how still and empty the place was. For a moment, the thought flickered through my mind that perhaps I was mistaken, perhaps the conference was supposed to take place somewhere else on some other campus, or perhaps on another day. I recalled the long exhausting trip Iâ™d made from CT to the Massachusetts cape and groaned inwardly at the thought it had all been for nothing.
Steeling myself, I coasted into the parking lot which was dotted with a modest amount of cars, braked, switched off the motor and glanced over the information sheet. Apparently, I was in the right place. The conference on alternative approaches to the mental health system was supposed to be here.
To the left of my window a few slovenly dressed young men lounged against a car chatting. One young man with a bald head and a muscle shirt revealing a maze of tattoos on his back, shoulders and arms held a can of beer slackly in his right hand. I wheeled down my window and inquired about the conference and where it was located. They had no idea of what I was talking about. Not encouraged, I grabbed a notebook and a good pen, and stepped out of the car.
Iâ™ve participated in conferences at college campuses with beautiful brick buildings covered with ivy, trees towering over them in leafy majesty, sweeping lawns carefully manicured, bell towers sounding off peacefully.
In contrast, each of the buildings I passed on this campus was made of concrete, making it impossible to distinguish one building from another.
I was having some trouble making it to my destination as my feet stumbled across the uneven concrete paving stones pushed askew by overgrown weeds poking out of the cracks.
Eventually, I came across a middle aged woman and asked her about the conference. âI think I saw a sign like that in the cafeteria she said, pointing in that direction.
The meeting was held in an oversized classroom with around sixty people present who, as I discovered later on during a hand count, had come from all over the United States. Robert Whitaker was just finishing his talk based upon the work he did for his book Mad in America by remarking that studies indicate that out of individuals who have psychotic breakdowns, approximately 70% appear capable of recovery without the use of medication. Since anti-psychotic medication can have such severe side effects, including brain damage, he asked, âWhy doesnâ™t the mental health system allow such individuals to use alternative approaches to psychiatric medication?â
As a long term survivor who experienced abuse within the mental health system, I responded with an immediate lurch of agreement inside of me. But, at that juncture, I was still struggling with the extent of my commitment to his views.
Mr. Whitaker stood at the podium responding amiably to questions until the conference broke up for lunch. Quickly, I moved towards David Oaks, Executive Director of Support Coalition International and solicited his attention. His organization, founded in the early 1980s, opposes abuses within the mental health system including forcible medication and ECT. I hoped to spend some time with him during lunch talking about his ideas and considering whether Iâ™d like to join the organization.
As I walked across the linoleum floor to the cafeteria filled with cheap metal and plastic chairs and tables, I couldnâ™t help but compare the venue to the last veterinary conference I went to with my husband. On that occasion, as I made my way towards lunch at a fancy hotel, groups of representatives from pharmaceutical companies handed out free key chains, water bottles and hats, etc. I guess once youâ™ve got people all medicated, you might as well medicate their dogs and cats as well.
Unexpectedly, at lunch I ended up sitting not only with David Oaks but also with Don Kriegman, who had organized the conference, and also a friend of his, a psychiatrist named Dr. Z. I withhold her name in case this essay would be an embarrassment to her. As we began to talk, Dr. Z explained that sheâ™d only attended the conference as a friend of Donâ™s, and that ordinarily she works at a psychiatric hospital for children.
I felt sorry for her at that juncture, because just before the conference broke up, several people vilified psychiatrists who prescribed medications to children who do not have a choice whether to take them or not. âSo you prescribe medications for children.â Said David Oaks in a cautiously polite tone of voice.
Dr. Z looked studiously at him through her horned rimmed glasses. She wore no make up and her shoulder length mousy brown hair was brushed back into a ponytail at the base of her neck and secured with a rubber band.
Her face was serious and earnest and when she responded her voice was touched with the accents of a person used to long hours of study, used to choosing her words with discretion, âYes, I do, but I prescribe them very carefully.â
Then the conversation veered to the question of the use of medication in general. Without thinking much about the impression I would make, I thought back to what it was like to be deeply psychotic, feeling as though razor blades were slashing at my brain, and I said quite spontaneously, âI was happy to take medication when I had my breakdown.â What I didnâ™t say, was that Iâ™ve always considered terminating medication one of my primary goals.
Looking straight at me, David Oaks, a seasoned veteran of conversations like this, responded to me by saying, âI found that any amount of the medication was hurtful to me, made me feel sick and lethargic.â I didnâ™t immediately respond to what he said because I was still unsure about whether I was ready to make a public commitment at that point.
As a result, assuming she had a soul mate, Dr. Z immediately warmed up to me, âTell me about your symptoms.â She said. I took a deep breath to respond, but David Oaks interrupted me, âI would object to the word âsymptom,â he said,â as reflecting the spirit of the medical model, and not acknowledging the broad continuum of human behavior.â
This was a new concept to me that I didnâ™t feel like dealing with at the moment. The total focus Dr. Z gave me at the moment was a total ego boost, and I wanted to be left alone to revel in it. So after acknowledging Davidâ™s point briefly, I continued on to explain that 24 years ago, Iâ™d had a breakdown where I became very manic and imagined I was Eve in the Garden of Eden for at least a few hours. It was a serious breakdown that occurred after six months of increasing confusion.
However, immediately after I was put on medication, I substantially returned to normal.
In conclusion, I said, âIâ™ve had a complete recovery. Iâ™m doing extremely well. I run a small business. Iâ™m married with three lovely children, and have also written a quite excellent book on my experiences.â And I added, âI no longer take medication or see a therapist.â
For a while we chatted about my book, and I told her Iâ™d send her a booklet of excerpts that Iâ™ve printed to share with interested people like her. She said sheâ™d like that and gave me her home address to send it to. Further conversation revealed that sheâ™d received her training at McLean Hospital in Boston, the place where Iâ™d been hospitalized as a patient. Iâ™m like âHey, sistahâ because once a McLean person, always a McLean person whether you are on either side of the patient/professional divide.
By then it was clear that David and I would never have our conversation because the conference was reconvening. We quickly agreed to talk at another time and then he and Don Kriegman gathered up their things and left, still uninformed about my views on medication.
This is what I would have told them. For me, and people similar to me, I support the use of anti-psychotic medication in the middle of a mental health crisis, but I would never recommend taking it on a long term basis. In the same way that I wouldnâ™t recommend taking Novocain indefinitely once a root canal has been fixed, that I wouldnâ™t recommend having an ongoing epidural after the baby has been born, that I would not continue on with anesthesia after an operation, I would not think of continuing medication beyond the immediate crisis.
Fundamentally, I was present at that conference precisely because Iâ™m a person who opposes the current mental health system, its over dependence upon psychiatric medications, and its refusal to allow for the possibility of recovery. But apparently, my ill thought out words had made Dr. Z bold.
Once David Oaks and Don Kriegman were gone, she turned to me quickly, touched my arm and said in a conspiratorial voice. âMy dear, you most definitely have bipolar disorder, and I would recommend lithium for you.
That medication would make you a whole new woman.â I was completely taken aback, âBut Iâ™m doing fine now,â I said. âThe last time I had a breakdown was years and years ago,â feeling as I said so that little twinge of doubt wondering if there was something about me, something seriously mentally ill that I hadnâ™t noticed during the conversation.
But she was on a roll and didnâ™t hear, âIâ™ve found many patients who struggle with your issues take well to Lithium.â She smiled at me kindly, and an innate sense of courtesy on my part, or maybe an engrained fear of her as one of a band of professionals who had almost destroyed my life at one point, made it impossible for me to share with her what I really felt.
After she was gone, I was left feeling amazed. She had spoken to me all of, what, fifteen minutes, and she was already quite certain that I had bipolar. How could she be so confident of herself? Did she know that in the 24 years since my first breakdown, numerous psychiatrists, many of them better qualified and far more informed, had struggled and failed miserably to formulate an accurate diagnosis for me? No. I could only be floored by such arrogance. Worse, it wasnâ™t as though I had asked for her opinion, but she assumed I wanted it. And, it never appeared to occur to her, that after 24 years in the system, I probably knew a whole lot more about Lithium than she did. And, finally, you out there who have dealt with mental disabilities as I have can, Iâ™m sure, share this point with me, no medication I tried, ever made me a new woman.
I thought back to her words, âI only prescribe medications very carefully.â Did she honestly consider what she had just done âcarefulâ?
I had said, I have recovered. But clearly, from her behavior, it appeared that Dr. Z was incapable of believing that it was true. As with many psychiatrists who work according to the medical model, she assumed that once you are severely ill, always severely ill.
I was originally diagnosed as having âa classical case of schizophreniaâ.
Schizophrenia was first identified by a physician named Emile Kraepelin who described it as biologically based and characterized by ongoing lifelong deterioration ending eventually in death.
This is the perspective on mental illness underlying the medical model for the treatment of any serious mental illness. Currently, it is a treatment that not only denies the possibility of recovery for those with serious mental illness, it also denies the possibility that people with serious mental illness can ever function without psychiatric medication or constant medical supervision.
A few weeks after my encounter with Dr. Z, I followed up by sending her a copy of my booklet of excerpts. Along with the booklet, I included a cover letter explaining my opposition to the long term use of medication.
Since then, weeks have passed by, and I have not heard from her.
Most of the people who read my booklet of excerpts take at least a few minutes to sit down and write me an email or a post card. Some even volunteer to support my efforts to get my book published. Yet, I do not expect to hear from Dr. Z ever again. As with so many psychiatrists I have interacted with similarly, she is entirely unable to maintain civil contact with a person who does not agree with her views.
When so many studies indicate that genuine recovery from mental illness is possible, when so many studies indicate that it is not just biology, but available social supports that make a difference in the outcome of serious mental illness, why this insistence that serious mental illness is solely a biochemically based disease of the brain similar to diabetes? One answer is that mental health advocates hope to use this approach in order to reduce stigma.
However, to a certain extent, it appears to someone like me as if the mental health profession is more of a cult than a science. Thus, when I had my conversation with Dr. Z, she brushed off my statement that I had recovered, in the same way that the Jehovahâ™s witnesses I frequently entertain brush off what I have to say about my faith.
People like Dr. Z need to stick with the facts. When I go to my gynecologist, I make sure I have a pap smear because studies indicate it is a good way to avoid cancer. When I go for a mammogram, I am doing the same thing. When studies came out indicating that the widespread use of hormone replacement therapy was unwise, I paid attention. In mental health, as in these other areas, the facts should still count.
Treatment based upon a social agenda, i.e. the desire to erase stigma, or treatment based upon profit, i.e. to further the interests of pharmaceutical companies, rather than on valid research (and I say this because there has been so much deception when it comes to reports on the research done in this area), cannot be said to be truly scientific.
After the conference, I returned to CT and later received an email from David Oakes with the names of around four people he knew in CT interested in his organization. At some point, I emailed to him my position on recovery and on medication as I have articulated it here, and I joined Support Coalition International.
At the conference, I learned that we donâ™t have the money, the prestige, the power or even the numbers enjoyed by those in the mental health profession who buy into the medical model. But my encounter with Dr. Z taught me exactly why people who believe in alternatives to the medical model of mental health need to continue on to fight for what we believe in.
I am encouraged by the fact that despite our small numbers, we have been very effective. Here in CT, DHMAS has adopted an agenda that promotes recovery. The Presidentâ™s New Freedom Commission on Mental Health and the Surgeon General, have also adopted an agenda that promotes recovery. It is now up to every one us to ensure that the concept of recovery becomes more than just window dressing or a way to shut people up who object too loudly to the abuses of the mental health system. Recovery can and should become a reality for the good majority of people with mental health disabilities.