Personal Advocacy - Representation

Robin Cunningham Health Guide

    When someone mentions advocacy for the mentally ill, what comes to mind for most people are organizations focused on lobbying congress and educating the general public.  Each of these endeavors is worthy of lengthy discussion, but neither provide what I would consider to be "personal advocacy."


    Personal advocacy is taking up the cause, on all fronts, of an individual with mental illness.  More specifically, this calls for the advocate to: 1) represent the best interests of the consumer when the consumer is unable to effectively represent himself or herself; 2) mentoring the consumer in living skills [including coping mechanisms]; 3) working to ensure that the consumer has appropriate living conditions; and 4) assisting the consumer to reach his or her full potential.

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    In addition to my original breakdown in 1956, I've experienced two relapses, one in 1965 and the other in 2005.  I've been hospitalized twice, the first time for a month; the second for two weeks.  I was remarkably fortunate to have strong advocates on the occasion of each break and in all the difficult times between.


    When I first became ill in 1956, it was my mother who demanded I see a psychiatrist immediately.  She was convinced that medical treatment would help me.  However, openly admitting to having schizophrenia at that time could easily destroy one's life.  Stigma was universal and powerfully destructive.  Thorazine was the only medication available for the treatment of schizophrenia and its benefits were not widely understood.  [It never worked very well for me.]


    On the other hand, my father had witnessed the tragic lives of his own father, older brother and younger sister.  They all had schizophrenia.  His father hanged himself when a patient at Eastern Washington State Hospital.  His brother and sister had undergone prefrontal lobotomies, which virtually destroyed the remainders of their lives.  His brother died while a resident of this hospital.  My aunt tried to drown her three children.  My father was afraid for me.  He'd seen no evidence that recovery was possible.


    These two advocates, my mother and father, were very heavily invested emotionally in my welfare, but they had no idea how to help me.  Despite the counsel of my psychiatrist, they made many mistakes, but I always knew they loved me and were doing the very best they could.  I was highly dysfunctional and could not possibly have represented myself.  If they had not vigorously advocated for me during these early years, I would have long since been dead.


    In contrast, my psychiatrist, Dr. Sol Levy, knew how to help me, but was not emotionally involved.


    Although each of these three advocates played a very different role in my first recovery, each strongly represented me when I was unable to effectively represent myself.

    As noted above, my mother insisted that I see a psychiatrist immediately [five days after my symptoms first appeared].  She also made sure I took my medications and followed Dr. Levy's instructions.  She resisted when members of our larger family suggested that I was either lazy or acting out, and was sorely in need of discipline.  She stood defiant when members of our church insisted I was possessed.


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    Whenever Dr. Levy suggested that one thing or another might be beneficial to my recovery, regardless of the cost, my father always found the money.  My parents were self employed and had no medical insurance.  For many years my father worked 14 hours a day, seven days a week to pay for my treatment.


    Dr. Levy had trained in Germany and Switzerland.  He believed in the medical model of mental illness [now universally accepted in the USA] and had the courage, despite what his professional associates said, to treat me accordingly.


    I was actively psychotic from 1956 through 1966.  During this entire period, my three personal advocates never suggested or even hinted to me in any that I might not recover, or that there was anything that I could not do.


    When my medication stopped working in 2003, the schizophrenia once again came on very fast.  I had given a speech and was answering questions afterwards when I suddenly realized that I understood neither the questions nor my own answers.  Within three days I was totally dysfunctional.  I couldn't remember the day of the week or what I had eaten for breakfast, if anything at all.  I was unable to set out my medications for the day.


    Despite the fact that she had never seen me in a psychotic state, my wife was marvelous.  She would rent a movie on Sunday and I would watch it three times a day for a week, never remembering each time that I had viewed the film before, let alone the plot.


    My doctor and I searched in vain for over a year and a half trying to find a combination of medications that would help me.  When he finally suggested to my wife that because of my age perhaps recovery was no longer possible, she became incensed.  She insisted that she knew that the "old me" remained within and was trying to get out, and demanded that we continue our search.


    It was the very next medication we tried that brought me back.

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    Please remember, this writing reflects my own experience and opinions.  If you, or a loved one, are experiencing the symptoms of schizophrenia, or any other mental illness, you should seek professional assistance.


Published On: September 29, 2008