by Ken Braterman
There is plenty of hope! People with severe mental illness get well
and stay well. We live happy, productive lives, have successful families and careers, and achieve our goals. Many of us recover completely, and EVERYONE can recover somewhat
Recovery is not the same as being “symptom free,” “stable on medication,” out of the hospital, or even having a job. Those concepts are about not being sick. Recovery is about being well.
It’s about improving your sense of your own value, the quality of your relationships and connection to the community, your overall satisfaction with the person you are, and the quality and balance of your life.
Recovery is a concept the “patients” taught the doctors, not the other way around. When I started doing this work in 1997, most mental health professionals still considered this idea radical. But now, too many people with severe mental illness have gotten well, stayed well, and told their stories of how they did it.
Recovery is now a “mainstream” idea. Major research centers study it. The federal government is sponsoring much of that research and publishing materials about what recovery looks like and how it works. When I started teaching Mary Ellen Copeland’s Wellness and Recovery Action Plan (WRAP) 10 years ago, the research and treatment professional establishment mostly thought she was radical, anti-medicine – or they’d never heard of her at all.
In 1999. The U.S. Surgeon General called recovery a realistic personal and national goal. A Presidential commission made it national policy in 2003. In 2006, the federal Substance Abuse and Mental Health Administration (SAMHSA) issued a “consensus statement” that said, “Recovery will be the focus of all the mental health services we support,” and attached a list of 10 elements (right out of Mary Ellen’s book) that make a service “recovery based.”
It took 20 years of struggle to reach this point. It will take another generation to make it a reality. The current economy is wreaking havoc on recovery-based services across the country, even though they are less expensive over time than the old medical model.. But these policy statements by the President and SAMHSA brings the recovery movement closer to the point where it can have setbacks but can’t be turned around or stopped completely.
It is now politically incorrect for a professional to say that recovery is impossible, but many still believe that. Most that I talk to are excited by the idea of helping people get well and eager for new insights on how to do it better. And many are already doing it. Many others think “recovery” is just a new vocabulary to describe what they’ve always done. They have to be educated.
I am not against mental health professionals or mental health agencies.
A therapist in a hospital gave me the insight that started my recovery, and another one in a community mental health center pointed me in the direction that put my recovery into irreversible high gear. They understood recovery and offered me the right next steps.
But achieving a mental health system that promotes recovery will take another generation. Our current system was designed in the 1970s to maintain people just released from big asylums, and is now being asked to transform itself into a system that helps people get well and stay well. A change of that magnitude has three speeds: slow, stop, and reverse.
Medicaid and insurance regulations have to change because treatment is determined by reimbursement rules. Professionals need to be re-trained, professional schools must change. And professionals who really feel recovery in their hearts, as well as their heads, must rise to senior positions in the system, enough to create critical mass in those agencies. All this will take awhile, but it has already started.
Everybody has a different definition of success and a better life: getting a job or a better job, more education, improving self-esteem, quality of relationships and community connections; getting out of a bad relationship, into a safer more comfortable place to live. So recovery and recovery strategies vary from one person to another.
But all have common elements as well. You have to want to get well, believe you can, and hold on to that hope in the face of setbacks, which are an inevitable part of recovery.
Consumers’ and their families must unlearn negative messages about their own potential and value, their own right to define success for themselves, and their RIGHT to a system of care that helps them succeed on their own terms. Professionals and agencies must learn to collaborate with their clients to help them define and achieve their personal vision of success and a better life.
Many professionals I talk to still think recovery is just for “high functioning” people, not the really sick ones I see in my work.
I ask them to account for me. I was not high functioning. I would swing from euphoria, to hyper-agitation and irritability, to exhausted and unable to move, and back again in two hours – ten complete cycles a day.
I didn’t just hear voices. I was a bear in the Humansphere trying to get the Bureau of Bears’ permission to go back to the woods and sleep through the winter. I participated in Bureau of Bears meetings every day.
Between 1975 and 1977, I had two life-threatening illnesses. Only one was a mental illness. I lost my job as a writer and editor, my marriage, savings, condo, friends, community, and religion. I drove a cab all night in New York City for two years, and in North Carolina for one. I was homeless twice.
Two bears rode with me in the cab, to keep me company, make me laugh, help me understand what I was learning about humanity, and talk me out of doing anything that would contribute accidentally or on purpose to my premature death. If I did, I could never sleep through the winter in the woods. That was Bureau policy.
I never though the bears were real. I knew they were products of my imagination, characters in a book I intended to write someday.
Twenty years later, I talked about the bears to a recovery expert named Patricia Deegan. She said, “Brilliant! You structured your illness to keep you alive. Many cultures would consider that a spiritual gift, not an illness at all.”
If I had told the first doctor I saw in 1977 about the bears, he would have labeled me schizophrenic and delusional, given me enough major tranqilizer to turn me into a zombie, and told my family I’d get worse for the rest of my life. The invasive medicine,, plus the terrifying label and hopeless prediction, would have made that prophecy self-fulfilling.
Everything that doctor knew about hearing voices in 1977 has been proven wrong: voices come from many sources, including spiritual awakenings, not just schizophrenia; federal studies that followed the same patients for 25 years found that one-third were symptomatic most of the time, one-third, sometimes with long periods of wellness in between, and the other third had one psychiatric event and never had another one. Turning people into zombies with as much medication as they can stand for the rest of their lives is unnecessary in the vast majority of cases, but it still goes on.
Instead, he labeled me “manic depressive,” and my family knew people with “manic depression” could get better with medicine. So they treated me like I would get well – an unearned stroke of luck that gave me the time and support I needed to get well.
Speaking of that first doctor — he asked me, in front of 40 staff members at grand rounds, what my goal was after release. I said, “I was a writer before I got sick, and I’ll be a writer when I get well.”
He and the whole room started shouting at me. “That idea came from your over-achieving parents, and it’s keeping you sick. You need to get a job driving a cab, a furnished room in Kenmore Square. Learn to appreciate yourself for what you really are, and let go of those fantasies.”
I said, “If that’s such a good thing to do, why don’t you do it?” He said I was arrogant, looking for a free ride from the system because I thought my real job was beneath me.
This was not an isolated, arrogant physician who got me wrong. Two years later, in North Carolina, the illness brought back the isolation or the isolation brought back the illness. I was driving a cab again. A whole new treatment team told me that driving a cab was the cure, and thinking I was a writer was the disease. That’s what happens in a mental health system that thinks recovery is an impossible dream.
Driving the cab was part of the illness, not the cure — a perfect isolation strategy. I could have all the mood swings I wanted, and nobody was with me long enough to notice. I could be as angry, depressed and psychotic as I wanted to be as long as I kept quiet about it. When Hollywood made a movie about the deadly combination of isolation and psychosis, they named it “Taxi Driver.”
I heard the exact same voices in my head that Robert de Niro heard when he was driving, only I had the bears with me to dispute them. And when he killed all those people in the end, I knew just how he felt, but the bears would always remind me that doing anything like that would keep me from sleeping through the winter. Maybe it really was some kind of spiritual gift..
I was a mentally ill cab driver when these caregivers met me,and their job as they saw it was to get me stable enough to do it again. .
Fast forward to 1995. Years of starving and suffering are behind me. I’ve put myself through graduate school and worked successfully at a newspaper for so long that nobody can tell me I’m crazy for saying I’m a writer. I own a home free and clear and will never be homeless again. I’m not driving a cab, institutionalized, or dead.
I was also 100 pounds overweight. I smoked cigarettes, and could not walk 5 minutes without my whole body turning against me. I was incapable of personal relationships. I went to work, did the work, and got ready to go back to work. On weekends I slept, watched TV, and if I had the energy, go out to dinner and a movie or visit my family.
Privately, I’m full of anger and shame, still isolated, with a nasty sense of humor that I often can’t control. I have a chemical imbalance, but magic chemicals are controlling it. I work, therefore I’m well, and this is as good as it gets. I’m grateful beyond measure.
This is not recovery. This is being stable on medication with my dream job.
Suddenly (over a period of about six months), I started losing my temper in the office, and being rude to people while covering stories. I had anxiety attacks, took more and more anxiety medicine, until they could not give me any more. The attacks kept getting worse and more frequent. I’m missed deadlines and could not write.
I put myself on disability leave and spent the next nine months on the living room couch. Some days I wanted to die. Some days I wanted to kill myself. Other days, I felt so bad I waS afraid I would NOT die, just continue to suffer forever. They kept increasing my medicine and I keep getting sicker until I can’t sign my name or control my bladder. Finally, at my insistence, they gave me different medicine, and I gradually stopped being sick. But I was nowhere near well.
I tried going back to work part-time. After four months, it was not working, and I was trying to think how to convince my doctor to put me back on Social Security. But the paper let me go. They’ve given me a year, I’ve embarrassed them in public again. I can’t say I’ll ever be productive like I used to be. .
So I isolated in the house for nearly two years, immobilized by anger and shame, mentoring wannabe writers on the Internet, telling people I’m writing a book. (I did write a little one about writing that a New York agent loved, but it was not commercial and didn’t sell.) I was dissatisfied with my life but did not know what to do about it.
One day, someone made me very angry over something very trivial, and the sudden rush of strong emotion triggered the rapid cycling. I probably could have ridden it out myself, but I checked into a general hospital, hoping that they might hook me up with some resources to address the isolation, anger and shame.
A therapist there listened to me talk and said I was a walking temper tantrum. “You keep doing everything you’re supposed to do, and the rug keeps getting pulled out from under you. You stuff all the feelings, and they come out at all sorts of inconvenient times, and ways that are damaging to you.” she said.
She said I had to stop playing the blame game and take responsibility for my choices. When bad things happen to you, it’s not your fault, but it’s your choice what you do next. Even though those horrible things and horrible people really happened, and there’s a kind of satisfying righteousness to the anger, it stops you from moving forward.
“When horrible things happen to you, it’s not your fault, but it’s your choice what you do next,” she said.
So the ultimate choice is whether to keep playing the blame game and stay stuck, or decide to stop blaming and take responsibility for what happens next.
That was the start of my recovery. Instead of getting defensive or dismissing this, as I normally would, I re-examined my life as choices I made, not horrible things people and the illness did to me, I understood why I made those choices and forgave myself. The anger and shame lifted.
The next therapist put me in touch with a consumer-run peer support agency, and for the first time, I had friends who could truthfully say they’ve been there and knew how I felt. That was the end of my lifelong isolation.
He also suggested Mary Ellen Copeland’s 40-hour recovery training.
I learned her recovery principles, a relapse prevention and crisis management program, and a personalized toolbox of wellness tools that worked for me.
In this approach, even a mental health crisis is a learning experience if you improve your understanding of what triggered it and how you might have recognized it sooner. The sooner you react, the less severe your symptoms will become. Often you can prevent them completely. You need to identify your triggers and early warning signs, and react as soon as you spot them.
A few weeks after that first 40-hour WRAP training, I hit the kind of depression that, before, would have flattened me for a week or two. Using the skills I’d just learned, I beat it in two days.
I made myself go to my support group. I had an unscheduled visit with a therapist and the medication nurse. I did two hours of very heavy exercise, took a relaxing bath, wrote, read a book, sang songs and said prayers. That night, I went to the peer support center and enjoyed the company. I was proud of myself for not letting the depression keep me isolated.
The next day, I felt better but was not out of the woods, so I went to another support group. Then, I remembered a 12-step overeaters meeting. A woman was there who had just moved to the area. After the meeting, I flirted with her for half an hour and the depression was gone. Mary Ellen would call that wellness tool a “diversionary activity.”
This was the first time I had controlled my moods instead of my moods controlling me. Just knowing I could do it changed my life. That was even more important than getting over that one depression.
Over time, these skills have reduced, not eliminated, my need for medication.
Today, I consider myself fully recovered, despite taking medicine every day. People with high blood pressure take medicine too. I’ve had my first real healthy relationship with a woman who is my equal in every way except where she’s my superior. I do challenging, creative, socially useful work advocating for recovery-based mental health services. I orient new staff at NH Hospital about recovery, and how hospital; staff can help and hurt that process. I teach recovery principles to inpatients.
I speak to recruits and experienced police officers at the NH Police Standards and Training Academy about responding to people in a mental health crisis — which they do more and more frequently now that state budgets are making community-based treatment harder to access. But my life is balanced. It’s more than my work and my work is more than my job. I’m a person I respect, a person other people respect, and a person I like.