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January 15, 2013 by Courtenay Harding, PhD

Why Is It So Hard to Believe in Recovery? Part I

A long time ago in a galaxy far away, I was a nurse at in the neurosurgical unit at Boston’s famous Children’s Hospital. One afternoon, we received a semi-comatose patient named Charlie in our ICU. He was 15, and apparently a really good kid from a terrible neighborhood in Roxbury, a section of Boston next door to us. He and his best friend had found a gun in a trash can. They thought that they had checked the gun barrel for bullets and proceeded to play a game of Russian Roulette. The friend put the gun between his own eyebrows and pulled the trigger.

The gun just clicked and nothing happened. Charlie did the same thing, but there was one last bullet and it shot through his head and out the back side. He arrived from Beth Israel Hospital nearby, having had the surgeons debride his wounds (meaning they had removed the damaged tissue along the bullet’s path so the wound could heal). Because many deaths occur post-surgery from the brain swelling against the hard skull making further injuries, he was sent over to us. Our neurosurgeons had figured out a way to take the top half of the skull off and put it in the freezer. Then, they would sew up the scalp over the jiggly brain; let the swelling occur and then subside. When it returned to a normal size, they would put the skull cap back on. I suspect something similar was done for Congresswoman Gabrielle Giffords after the Tucson shooting 1. For Charlie, the most amazing thing happened. He walked out of our hospital 6 weeks later needing only a little outpatient physical therapy for one hand and some speech therapy. I could hardly believe my eyes. Imagine shooting a gun between your eyes and walking away with your life. Astonishing! We had all assumed that it would be a sad story to tell.For the past 30 years, as a psychologist/professor of psychiatry, I have been teaching members of the caring professions about recovery, especially from schizophrenia

2,3. There have been 11 contemporary long-term follow-up studies of 20 to 30+ years in length. Each of these studies found that significant improvement and even recovery had occurred over time for one half to two thirds of each group studied 4. Even in the shorter-term studies, people were getting better as early as 3 to 5 years 5.Early on, clinicians of all stripes yelled at me about how ridiculous such a thought could be. After all, for the past 120 years, our training curricula had pronounced that a downward course or, at best, marginal levels of functioning, were all that a person could hope for with these significant psychiatric problems. In addition, clinicians kept seeing profoundly disabled people day after day and no one appeared to be getting much better. Therefore, the old predictions must be true.

What the staff had forgotten were all the people who had left, whom they didn’t see any more, as well as the impact of systems with low expectations for a individual’s improvement. Even if they thought about someone they hadn’t seen in a while, the assumption was made that the person was in another provider’s caseload across town. The clinicians did not realize that another scenario might have taken place – one in which the clinicians were systematically deprived of hearing! After all, Joe or Mary never called them up to give a report about long-term outcome saying such things as “Hello. This is Joe, and I am calling to say I am married, have three children, and a fulltime job and thank you very much for all the work you did to help me seven years ago.” We, clinicians, hardly ever hear such stories and, as a result, we keep thinking that this development rarely ever or never happens. But the long-term studies tell a different story. This new insight occurred because the researchers (including our teams) followed intact groups of people for decades, no matter if they left the system or not. Usually investigators assess only people still in the system of care because it is much more convenient to do so. Finding people, who have left the system, is much more difficult, but still possible. When a study does go the extra mile, an important rebalancing of our understanding occurs. It is then when we hear many more tales similar to that one from Joe and Mary.

Our understanding of what is possible has dramatically shifted. We can now provide more hopeful messages, backed up by consistent research findings, about the possibility of significant improvement and recovery to those people with whom we work.

References

1) Childs, D.: “Gifford’s Brain Surgery Safe, but not Risk Free, Surgeons Say.” ABC News Medical Unit, May 18,2011
2) Harding, C.M.; Brooks, G.W.; Ashikaga, T.; Strauss, J.S.; Breier, A.: The Vermont longitudinal study of persons with severe mental illness: I. Methodology, study sample, and overall status 32 years later. (lead article) American Journal of Psychiatry, 1987, 144(6): 718-726.
3) Harding, C.M.; Brooks, G.W.; Ashikaga, T.; Strauss, J.S.; Breier, A.: The Vermont longitudinal study: II. Long-term outcome of subjects who retrospectively met DSM-III criteria for schizophrenia. (lead article) American Journal of Psychiatry, 1987, 144(6): 727-735.
4) Harding, C.M.: Changes in schizophrenia across time: paradoxes, patterns, and predictors. In: Carl Cohen (ED.) Schizophrenia Into Later Life: Treatment, Research and Policy. APPI Press, 2003, pp.19-42.
5) Strauss, J.S. & Carpenter, W.T. Jr.: Prediction of outcome, III. Five year outcome and its predictors. Archives of General Psychiatry, 1977, 34:14-20. This essay is a revision of an editorial which was written by the author and published in RECOVERe-works (No. 72, June, 2011 pp. 1and 2) for the Center of Rehabilitation and Recovery of the Coalition of Behavioral Health Agencies in New York City.

This article is reprinted from the October 2009 Newsletter, “Director’s New York Minute”, The Center for Rehabilitation and Recovery,
at The Coalition of Behavioral Health Centers, Inc. website.

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