Most days I don’t feel like a mental patient. In itself that might not seem like an odd statement, but when you examine my history or simply the fact that it’s my predisposition to insanity that pays my bills, you might expect that I’d wear crazy year round.
From the time I was thirteen through the remainder of my teenage years, I literally grew up in the inpatient mental health system. And now I earn my living as the deputy director of an agency funded to help people who also are labeled with psychiatric diagnoses. Additionally, I give trainings for mental health workers to help them learn how to make treatment more therapeutic and less traumatic for those under their care. Just as a model relies on her beauty for her bread and butter, my recovery—the maintenance of my mental health—is my earning chip. It’s funny, in all the years I have done this work I am asked less often than you would think about my health. More often inquiries are related to my illness. What was it like being inpatient for six years? Was I really in restraints for months at a time? Well, it sucked, and yes. What people are really asking for is the gore, the blood and guts of mental illness.
I don’t mind these inquiries; I welcome them. I often joke that my audiences are free to use me: “I’m a whore for the cause,” I say. If my story and the atrocities I endured can prevent future violations, then I am willing to relive my past. But when I’m speaking I don’t think I recognize this past is mine.I often distance myself. It is a different Deborah I am describing, from a long time ago and a galaxy far, far away.
And my audience seems to view me as a different person too. Maybe they disbelieve my story. Or maybe they just see me as a medical anomaly, an exception to the course mental illness typically runs. How else could it be? Is recovery possible? I must be different. That is how they must comfort themselves. Because I share tables with them, I am a colleague, a peer. How can I have the same characteristics as those they treat, medicate and incarcerate?
And yet, I was just like those whom some providers have written off as incurable. I was noncompliant, selfdestructive and disruptive. For years I didn’t respond to medication, although I consumed it in massive quantities and all forms—liquid, pill and, of course, intramuscular injection. I frequented the quiet room on a regular basis and was often forcibly put into restraints. And yet, like those of you reading this, I am now a functional member of society. Normal as much as normal can be defined. I have a job, pay my bills and live my life. I am no longer a danger to myself or others.
How did this happen? What got me better? I have worked in the recovery business for over a decade, and now when faced with these questions I don’t have an easy answer. In contrast, I can say without blinking what has been hard and what I hate. I hate my medications.
A colleague of mine once debated with me for hours over the benefits of my medications. He felt I didn’t attribute enough of my recovery to them. Well damn them, and damn him! I hate them. I hate them with every essence of my being. They slow me down; they dull my senses; they have made me fat, incontinent and lethargic. And yet I take them.
I have every reason in the world to be noncompliant with my medications, for all the reasons I mentioned and more. But the fact remains I need them, or something like them. While medication helps me maintain my status among the sane, it is also one of the last things remaining that makes me a mental patient. I am reminded of my condition every evening when I pour my meds, breaking out tomorrow’s doses into my discreet little gold pill box.
I get my meds at what my boss calls the ghetto pharmcy. I’ve been getting my meds there for years now. And now that a new 24-hour CVS with a drive-through pharmacy has opened up right by my house, it seems increasingly impractical. My boss doesn’t understand why I continue to go out of my way, why I need to compartmentalize my existence, but my pharmacy knows me and reminds me of who I was and who I am.
I get my makeup and my cigarettes at the new CVS. The pictures I take of myself and my boyfriend are developed in its one-hour photo lab. I don’t want the neighborhood CVS workers to confuse me with someone on psych meds. It’s bad enough I am treated differently at my lil’ ghetto pharmacy. Prescriptions for antipsychotic meds tend to have an intimidating effect on pharmacists. At CVS, my predisposition to mania is a secret. The staff know only that I have a good-looking boyfriend and that I smoke Kools, hardpack.
In the mid-1990s I went through the rite of passage for bipolars. I made the unilateral decision that I no longer needed medication. It was a funny thing, really, the way it snuck up upon me. I can’t really speak for others who too have played doctor, but for me it started benignly enough.
I was facing a stressful life —my life, the life for which I was taking these heavy-duty meds in the first place. And I simply could not fit my meds into my schedule. I missed a dose here and a dose there. In my defense, I had every intention of catching up. I promised myself I would go back to my regular dose on the weekend. I had to wait because I needed to have the extra time the weekend afforded me to sleep the day away as my body re-adjusted. But the weekends would come and go. I was busy; there were too many demands on my time. And so it went.
I slowly came off the medication completely. The longer I went without it, the better I felt, at least for a while. And then I spiraled. I became increasingly enraged, hateful of myself, hateful of my life. One night, after placing a panicked call to my therapist, I was taken away by the New Rochelle Police and brought to a local hospital ER.
I refused to be admitted, dodging the inquiries of the frustrated attending psychiatrist regarding any plans I had to harm myself by saying I didn’t want to answer her questions “out of fear that I might incriminate myself.” I was released early that morning, and I signed myself into the unit run by my psychiatrist that afternoon. I was manic. I signed in and was asking for help, but in contrast with my other admissions, this time I was an adult and a voluntary patient. This time help would be granted on my terms. I filled out my health care proxy forms (binding agreements where voluntary patients are allowed to place limits on the care they receive) immediately upon admission. I assigned my employer at the time, who was an attorney, as my proxy (spokesperson/alternative decision-maker). My detailed plan delineated a course of treatment of my own personal design. Taking the old drugs was not an option. The plan prohibited my doctor from prescribing me the wonder drug to which everyone but me attributed my previous health. His hands tied, my doctor prescribed me a newly approved medication that I had researched and requested. I was released within a month.
I felt ownership of my recovery. I had successfully outwitted the psychiatric profession; I reigned supreme. Energy I hadn’t had in years returned. I was losing weight. I felt good. I minimized the fact that I was awake the first 48 hours after my release. I attributed this to post-discharge excitement. But the insomnia continued. My energy levels continued to rise. Soon this energy turned into something ugly. I became rageful again and full of hate. And within two weeks I called my doctor, tail between my legs, asking for help. “I’ll go back on the old medication,” I told him. “Whatever you say, I’ll do it.”
That day goes down as a sad day in the annals of Deborah. I admitted defeat. I caved to my dependency on this intolerable drug, a drug that forces me into the mentalpatient role every two weeks as I sit in my phlebotomist’s chair while blood is drained from my bruised right arm. My doctor could have been smug; instead, he felt for my defeat. On some level, though it ran counter to all his research and faith in the drug he’d picked for me, I think he wanted me to win my little battle. He may never openly admit it, but I think he was cheering silently from the sidelines.
I will probably have to be on medication the rest of my life. I do realize the important role that my meds have played in my recovery. But the value of my flirtation with noncompliance is under-recognized and largely misunderstood. Noncompliance was an affirmation of me. Mental patients do not have much to barter with. We are stripped of our rights. We often don’t have much in the realm of material possessions. For many of us, cigarettes and coffee are the crux of existence.
When people have so little power, med refusal can be healthy because it is a way of asserting oneself. Saying “no” feels good. “Ha, ha! I’m going to do what I want!” Asserting and reclaiming power is vital. True learning involves making independent decisions and evaluating the consequences. Unfortunately, in the mental health system asserting yourself is dangerous. It can be retaliated upon with force and restraint. But for me, a vital part of my recovery was this noncompliance. Not acting out as I had in the past, but having the opportunity to be an informed consumer. The chance to make a choice regarding my meds was the first time I had occasion to make an uncoerced decision to seek and obtain treament.
And now I choose to be on this God-awful, debilitating drug that I loathe with every bit of hatred I can muster. Is it the drug that is making me healthy? In part, yes. But a greater part of my health I attribute to the fact that I choose to take the medication, and that I made this decision, however mournful it may be, on my terms.
For the record, this drug hasn’t transformed my life into sunshine and happy days. Some days I find I have little patience for anyone or anything. I could pathologize this, I’m sure, as I’m certain some who are reading this are doing. Once on a particularly crappy day I found myself bitching about work while waiting in an incredibly slow-moving line at the supermarket. I was exhausted and in a foul mood. “I hate stupidity,” I muttered. “I hate stupid people.” And then I uttered the coup de grace, “I just hate people PERIOD!” The kindly customer behind me in line asked me what I did for a living. “Oh,” I said, smilingly sheepishly, “I’m in human services.”
I’m generally not an angry person, nor do I think I’m a mean person. I’m compassionate, though I know I’m no Mother Theresa, not by a long shot. But I’ve grown to recognize the value of anger and to nurture and respect it, because my anger has saved my life.
Anger is a terrific motivator. Granted, it was my selfhatred and irrepressible rage that landed me in the loony bin and locked me away in restraints of all shapes and sizes and quiet rooms in two states, but it was my righteous anger that freed me. Intractable folk like me are the oil to the water of the mental health practitioners. Though it’s not said outright anywhere in any social work program or any credentialed psychology program, most mental health practitioners are conditioned to pacify patients. Mental hospital walls are painted in shades of blue to calm and soothe. Compliance is rewarded with privileges and the squeaky wheel’s complaints are pathologized and punished. My anger caused me to rise above the supremacy of the institutions and the system.
Prior to entering the inpatient system I had a lot to be angry about. My father was dead. I was poor. I wasn’t very pretty; to say I was homely was being generous. My mother seemed to resent me and showed me nothing more than disdain on good days. I didn’t have any friends. I realize this laundry list of ills may sound like things that should have contributed to a paralyzing depression, things to make me sad. And I guess they could have. I’d be lying if I said they didn’t. But had I allowed the sadness to envelope me and take hold, then I would still be a drooling mess, sedated in my own urine in the corner of some back ward somewhere. Of that I am certain. I was locked up for the first time shortly after my 13th birthday. The 4-year inpatient stint that followed gave me tons to be angry about. Though my mother visited me on a fairly regular basis during my first hospitalization, the visits decreased over time.
This was due in part to distance, part to the restrictions of the facility and my therapeutic needs, and part, I’m sure, to her sheer lack of interest. In her defense, my mother faced a difficult situation. She was a single mother of two, trying to maintain a middle-class existence in our orthodox Jewish world in Kew Gardens Hills. Her self-injurious, crazy daughter certainly didn’t help her acclimation into this world.
I always felt sub-standard in regard to my mother’s perception of me. In my young adult life, my mother continued to see me as I had been as an adolescent rather than as the person I had become. My recovery was invisible; Mom was stuck on crazy. My tireless efforts, the struggles with the meds and all the problems they bring in their wake seemed inconsequential. I’d be dishonest to say this didn’t hurt. But all that hurt ever produced for me was armfuls of scars. I became successful in my own right and showed her. I met and exceeded all expectations she had for me. Her approval was an unattainable brass ring. My mother still sees me as sick, and I have to accept that her view has less to do with me than it should.
I am not really angry at my mother anymore. My anger at my mother generated the energy I needed for a decade of work, with energy to spare. I was forced to fend for myself from a very young age, without fiscal or emotional support from anyone. With that, my focus was on the most basic thing: survival. And that drive for survival helped me to face the atrocities of the system. Had I familial support, would I be successful? Who would I have become had I not had to fight for all I now have?
I set out to describe the elements to which I attribute my recovery, but I’m afraid I have left more questions than answers. If my story is any guide, should we abandon those we love, let them play doctor arbitrarily and subject them to abusive treatment? I’m not saying there is one standard route to recovery. Nor am I saying that my way is the right way. I wish I didn’t have to be angry to survive. I wish I could have been motivated by peace and love and all that good stuff. But my reality was not one of love and kindness. It is changing, though, and on most days I’m happy. Just remind me of that.
by Deborah Max
Deborah Max is the Deputy Director of CHOICE of New Rochelle Inc., a peer-run case management and advocacy agency in New York. She has presented at conferences for the New York Association of Psychiatric Rehabilitation Services and the International Association of Psychosocial Rehabilitation Services and she has provided technical assistance about benefits and entitlements to mental health recipients and providers across New York. Max offers consultations around the country on trauma and harm reduction.