Recovery: The lived experience of rehabilitation.

This paper distinguishes between recovery and rehabilitation. Psychiatrically disabled adults do not “get rehabilitated” but rather they recover a new and valued sense of self and of purpose. Through the recovery process, they become active and responsible participants in their own rehabilitation project. The experiences of recovery as lived by a physically disabled man and a psychiatrically disabled woman are discussed. Recommendations for creating rehabilitation environments that facilitate the recovery process are also given. The application of rehabilitation approaches and technologies to psychiatrically disabled adults is a relatively new and exciting development in our field. The discovery and application of rehabilitation models allow us to think about this population in new and exciting ways. Of significance is the fact that from the perspective of the rehabilitation approach, it is no longer necessary to isolate the psychiatrically disabled as totally different from other groups of persons with disabilities. Today, artificial boundaries between groups of disabled persons can be bridged through the understanding that most disabled people share the same fundamental needs and aspirations: The need is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and propose within and beyond the limits of the disability; the aspiration is to live, work, and love in a community in which one makes a significant contribution. It is important to understand that persons with a disability do not “get rehabilitated” in the sense that cars “get tuned up” or televisions “get repaired. ” Disabled persons are not passive recipients of rehabilitation services. Rather, they experience themselves as recovering a new sense of self and of purpose within and beyond the limits of the disability. This distinction between rehabilitation and recovery is important. Rehabilitation refers to the services and technologies that are made available to disabled persons so that they might learn to adapt to their world. Recovery refers to the lived or real life experience of persons as they accept and overcome the challenge of a disability. We might say that rehabilitation refers to the “world pole” and recovery refers to the “self-pole” of the same phenomenon. The recovery process is the foundation upon which rehabilitation services build. This is most evidenced in the simple observation that we can make the finest and most advanced rehabilitation services available to the psychiatrically disabled and still fail to help them. Something more than just “good services” is needed, e.g., the person must get out of bed, shake off the mind-numbing exhaustion of the neuroleptics, get dressed, overcome the fear of the crowded and unfriendly bus to arrive at the program, and face the fear of failure in the rehabilitation program. In essence, disabled persons must be active and courageous participants in their own rehabilitation project or that project will fail. It is through the process of recovery that disabled persons become active and courageous participants in their own rehabilitation project. We see then that recovery is an important and fundamental phenomenon upon which rehabilitation efforts depend. It is therefore surprising that very little has been written in our professional and scientific journals regarding it. Perhaps the phenomenon is elusive precisely because it is so fundamental. Perhaps it is because the recovery process cannot be completely described with traditional scientific, psychiatric, or psychological language. Although the phenomenon will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it. At a recent conference that brought together persons with diverse disabilities, I had the pleasure of talking with a man who was paraplegic. We shared our stories of recovery. The Experience of Recovery At a young age we had both experienced a catastrophic shattering of our world, hopes, and dreams. He had broken his neck and was paralyzed and I was diagnosed as being schizophrenic. We recalled the impact of those first days following the onset of our disabilities. He was an athlete and dreamed of becoming a professional in the sports world. I was a high school athlete and had applied to college to become a gym teacher. Just days earlier we knew ourselves as young people with exciting futures, and then everything collapsed around us. As teenagers, we were told that we had an incurable malady and that we would be “sick” or “disabled” for the rest of our lives. We were told that if we continued with recommended treatments and therapies, we could learn to “adjust” and “cope” from day to day. Needless to say, we didn’t believe our doctors and social workers. In fact, we adamantly denied and raged against these bleak prophesies for our lives. We felt it was all just a mistake, a bad dream, a temporary setback in our lives. We just knew that in a week or two, things would get back to normal again. We felt our teenage world was still there, just waiting for us to return to it. Our denial was an important stage in our recovery. It was a normal reaction to an overwhelming situation. It was our way of surviving those first awful months. The weeks passed us by but we did not get better. It became harder and harder to believe we would ever be the same again. What initially had seemed like a fleeting bad dream, transformed into a deepening nightmare from which we could not awake. We felt like ships floating on a black sea with no course or bearings. We found ourselves drifting farther and farther away from the young, carefree people we had been. He lay horizontal and in traction while his friends were selected to play ball for prestigious colleges. I stood drugged and stiff in the hallways of a mental hospital while my classmates went off to their first year of college. We experienced time as a betrayer. Time did not heal us. Our pasts deserted us and we could not return to who we had been. Our futures appeared to us to be barren, lifeless places in which no dream could be planted and grow into a reality. As for the present, it was a numbing succession of meaningless days and nights in a world in which we had no place, no use, and no reason to be. Boredom and wishfulness became our only refuge (Knowles, 1986). Our denial gave way to despair and anguish. We both gave up. Giving up was a solution for us. It numbed the pain of our despair because we stopped asking, “Why and how will I go on? ” (Harrison, 1984). Giving up meant that for 14 years, he sat in the day rooms of institutions gazing at soap operas, watching others live their lives. For months I sat in a chair in my family’s living room, smoking cigarettes and waiting until it was 8:00 p.m. so I could go back to bed. At this time, even the simplest of tasks were overwhelming. I remember being asked to come into the kitchen to help knead some bread dough. I got up, went into the kitchen, and looked at the dough for what seemed an eternity. Then I walked back to my chair and wept. The task seemed overwhelming to me. Later I learned the reason for this: when one lives without hope, (when one has given up) the willingness to “do” is paralyzed as well. All of us who have experienced catastrophic illness and disability know this experience of anguish and despair. It is living in darkness without hope, without a past or future. It is self-pity. It is hatred of everything that is good and life giving. It is rage turned inward. It is a wound with no mouth, a wound that is so deep that no cry can emanate from it. Anguish is a death from which there appears to be no resurrection. It is inertia which paralyzes the will to do and to accomplish because there is no hope. It is being truly disabled, not by a disease or injury, but by despair. This part of the recovery process is a dark night in which even God was felt to have abandoned us. For some of us, this dark night lasts moments, days, or months. For others, it lasts years. For others, the despair and anguish may never end. Neither the paralyzed man nor I could remember a specific moment when the small and fragile flame of hope and courage illuminated the darkness of our despair. We do remember that even when we had given up, there were those who loved us and did not give up. They did not abandon us. They were powerless to change us and they could not make us better. They could not climb this mountain for us but they were willing to suffer with us. They did not overwhelm us with their optimistic plans for our futures but they remained hopeful despite the odds. Their love for us was like a constant invitation, calling us forth to be something more than all of this self-pity and despair. The miracle was that gradually the paralyzed man and I began to hear and respond to this loving invitation. For 14 years, the paralyzed man slouched in front of the television in the hell of his own despair and anguish. For months I sat and smoked cigarettes until it was time to collapse back into a drugged and dreamless sleep. But one day, something changed in us. A tiny, fragile spark of hope appeared and promised that there could be something more than all of this darkness. This is the third phase of recovery. This is the mystery. This is the grace. This is the birth of hope called forth by the possibility of being loved. All of the polemic and technology of psychiatry, psychology, social work, and science cannot account for this phenomenon of hope. But those of us who have recovered know that this grace is real. We lived it. It is our shared secret. It is important to understand that for most of us recovery is not a sudden conversion experience. Hope does not come to us as a sudden bolt of lightning that jolts us into a whole new way of being. Hope is the turning point that must quickly be followed by the willingness to act. The paralyzed man and I