“Serious mental illness” is a serious brain disorder
By: Marilyn Baker
My 49-year-old son lives with a serious mental illness, schizoaffective disorder.
Before he became ill, he was pretty much a typical teenager. He loved school, his friends, music, sports. He did well in high school and was accepted at several universities. His future was beckoning him with a promise of great things to come.
Unfortunately, his brain disorder brought his dreams to an end. For the past 30 years, he has been struggling to try to live with some semblance of independence.
The symptoms of schizophrenia appeared first. Even while in high school there were changes in mood and behavior. Suddenly no friends were coming around after school. He didn’t attend graduation and he didn’t get a yearbook. Schizophrenia starts off slowly, and sneaks up on the unsuspecting victim and his family. My son noticed it first.
He was aware of something changing during his teen years. In the late 80s, he wrote an essay for his high school English class. In it, he described a dramatic change in his personality. The opening paragraph says it all:
“When I was young and attending elementary school, I had much more of a dominant nature. I was truly outgoing and a natural leader. I don’t mean for you to infer that I am presently a recluse or anything, but my basic personality has clearly changed since my childhood.”
The teacher wrote “Very well written” on it in red ink. I did not see this essay until this year, when cleaning out some old stuff.
I was astounded. But if I had seen it then, I’m not sure it would have triggered any alarm bells, even though it should have, both for me and for his teachers. It’s too easy to assume that these negative symptoms are simply teenage angst -- something they will grow out of.
In my son’s case, that didn’t happen. His descent into madness was agonizingly slow. The next 15 years were utter turmoil for him and for us, his family.
During the 90s, others symptoms gradually appeared, including psychosis. He was deeply sad, and wildly manic. He started trading frenetically on the stock market with student loan money. He said his head was shrinking. Food was poison and he would eat nothing but watermelons. His legs became swollen with edema because he said he slept standing up. He laughed uncontrollably at times. Once when I asked him what was amusing him he said “Jesus is here in this room!” He was listening to voices that only he could hear.
While at university, he became convinced that something was wrong with his brain. He said that he had “lost his intelligence,” and was grief-stricken. Completely obsessed with his “intellectual deficit,” he dropped out of school and spent months in the stacks of the University of British Columbia medical library studying the brain.
He would stay up all night feverishly writing essays on brain function. He forged prescriptions for anti-psychotic medications on a pad stolen from his GP. He took cocaine because “it made Sherlock Holmes intelligent.”
He was, like the character of Charlie Gordon in Flowers for Algernon, trying desperately to discover a cure for his perceived illness before it overcame him completely.
During this time, there was no meaningful diagnosis. By that I mean, a diagnosis followed up with proper medical care: a comprehensive treatment plan, scheduled visits with health and social professionals and a prognosis.
In 2004, after a 911 call, he was hospitalized. After many months in hospital, and a lot of family support, we witnessed a miraculous turnaround. Stabilized on a complex cocktail of anti-psychotics, including Olanzapine, plus a mood stabilizer, and anti-depressants, he settled into an apartment and for the next seven years, he lived a mostly nice life: independent, happy, in a routine of his own making that involved visiting his favourite haunts - book stores, coffee shops and restaurants. He gained weight but it was not a serious problem compared to psychosis.
That stability all came to end in 2011. During a cruise, we attended a lecture on acupuncture given by a very pretty, personable young woman who spent an hour describing the benefits of acupuncture. She focused in on mental illness, telling us how well her clients did without meds, which were just chemicals with terrible side effects such as weight gain.
After hearing this, he stopped his meds, started acupuncture and within a month he was in the throes of a psychotic break from which he has never completely recovered. He basically vanished without a trace. The only clues that he was still alive were hang-up phone calls, from far away area codes. Finally, after weeks of worry, plus hospitalizations in different cities and a suicide attempt, he was admitted into Riverview Hospital, formerly the main tertiary care mental hospital in British Columbia.
He lived there for nine months before abruptly being discharged into the “community” two weeks before the hospital closed its doors forever. He was not stable and the discharge planning was terrible. He was soon admitted into a different hospital. The relapsing and re-hospitalizations have continued ever since.
Today, my son lives near us, with his beloved cat, but he has never really bounced back to the level that he enjoyed before. He relapses at least once a year into psychosis. He is impulsive, loving, reckless, thoughtful, sane, insane, erudite, catatonic, rude, smart, tormented, content ... sometimes all in the same week! His disability is real and permeates every aspect of his existence.
To help my son and other people like him, we need to:
1. Train high school and university teachers (and GPs!) on how to recognize the early warning signs that something abnormal is happening to the young adult’s brain.
2. Make cognitive remediation therapy a mandatory part of treatment, along with medications.
3. Conduct research into objective diagnostic biomarkers and effective treatments that don’t cause weight gain and other horrid side effects.
4. Tighten up the statutory professional regulation of complementary and alternative medicine practitioners.
5. Keep funding the police! They are a vital part of the treatment team and their wisdom and compassion has saved my son’s life many times.
6. Recognize that “deinstitutionalizing” is a failed social experiment and reverse it.
We, his family members, have learned to celebrate the good days, and get through the bad ones. What keeps me going is the hope that we, as a society, will come to our senses and start treating brain disorders with the same competence and compassion that we do for other serious illnesses.
Marilyn Baker is a caregiver who lives in British Columbia, Canada.