Coping with a major mental illness
By Robert Lundin
Like the majority of my college's graduates, life after graduation was full of promise for me. I had had a successful and memorable three years at the small piqtuesque Kenyon College in Ohio with a wonderful junior year spent at Exeter University in England. Regardless of some indecision about a career path, I wholly expected my days to be predictable, natural, and auspicious - until I became severely mentally ill at the age of 23.
I remember the first night I went mad. An acute psychotic episode is a vivid experience.
My thoughts became expansive, sweeping, one fantastic idea triggered another then another. My mind was both exhilarated and terrified with frightful revelations about life and the universe. It seemed nothing in the world existed outside of my perception. Then as I lay beneath my covers, perspiration beading on my brow, God was communicating with me through an ordinary 60 watt light bulb shining through the louvered closet to my bedroom. In reality, I was very ill.
It was November 1979, 18 months after my graduation from Kenyon. I was in Nashville, in my second year as a graduate student at Vanderbilt University. That night I drove to the medical school's emergency room and doggedly insisted I talk with the university's Chancellor. I had prophetic news of a pending nuclear attack.
Not surprisingly, the nurses didn't call the Chancellor. Instead they led me to a brightly lighted examining room and called a psychiatry resident. I sat uncomfortably on a examining cot refusing to talk. Why weren't they taking me to see the Chancellor? Couldn't they detect my urgency? My importance? I thought something had gone wrong. Actually, something had gone very right. This was my first definitive step toward a long and painful recovery from manic depression.
After a week in the psychiatry unit at Vanderbilt, I had begun my long relationship with neuroleptic medications, the class of major tranquilizers, which in the last half of the 20th century, have revolutionized the care of the mentally ill. I take them today. The side effects are well known, such as impaired concentration, memory loss, and, for a small unfortunate percentage, the spasmodic churning of the mouth and tongue known as tardive dyskinesia.
But when you can't live without these drugs, you learn to live with them. It's a percentage game. You can only hope that tardive dyskinesia doesn't happen to you. The odds are remote enough that you manage to have peace of mind. As an alternative, living with the symptoms of a major mental illness is so odious that any hope of change has to be embraced, despite its possible mean ramifications.
Persistent and severe mental illnesses are, to the informed, neuro-biological brain disorders; they're complex brain diseases. Here I'm talking about a limited number of illnesses: schizophrenia, manic-depression, and clinical depression being three. To the uninformed and ignorant - or, in the case of the health insurance industry, the greedy - they're reason for fear, hatred, ridicule, rejection and discrimination.
A mentally ill person has a two-fold dilemma. On the one hand he's traumatized by faulty brain chemistry, on the other hand he's beset with its grievous social ramifications.
Due to the stigma of mental illnesses, I said nothing about my psychiatric breaks and my medications to anyone for a long time. I couldn't accept that role or identity. I still disdained the mentally ill. I remember gazing around the waiting rooms at psychiatrists' offices and wondering what kind of kinky people sat in those chairs.
My family and I shared the dim hope that the episode at Vanderbilt was unique and if only I pursued a less stressful career, I would get along nicely with only a slight blemish on my record. But over time and after repeated manic episodes there inevitably came more grief, and then acceptance.
It takes time to learn to cope. Today, seventeen years into my illness,I yet struggle with the subtle difference between 'am I a manic-depressive?' and 'am I a man who suffers from manic-depression?' Writing and the arts help the mentally ill cope, perhaps as an outlet for anxiety, perhaps as a vehicle for self discovery. For people whose goals, ideals, and dignity are uniformly squashed, there is thirst for positive recognition. (Witness the John Hinkleys of this world whose craving for recognition goes awry.) Part of a poem I once wrote goes:
Hand me not this madman's fate, Cried I each sorrowful day. Poltergeists find in me of late, Fertile ground for their deceitful play. Woe to the life of a promising man, With a promising act to follow. Lend him thine aid, be compassionate men! And dig not his grave too shallow.
I can't really understand why, but I've always held tenacious hope for recovery. "I'm not going to not recover," I would say to myself in a convoluted fashion. On good days I would think how valuable this life was, how I wanted to make something of it. I could never give-in to this illness, I refused defeat.
But time can dampen one's spirit. As weeks blended into months and they into years, so came despair. For years I couldn't hold a job, I had no friends, I was still living with my parents at a time when my peers were getting married. After being fired abruptly many times, I had begun to perceive myself as an abject failure.
I've come to know there is an other-worldly power that watches over one though suffering and hardship. Occasionally, and you never can predict when, it intervenes and redirects your life with dramatic consequences. I can think of four times during my illness when this occurred. The first was that night in 1979 when I checked myself into the Vanderbilt hospital. I left my apartment with absolutely no plans to go there, nor did I even know where the hospital was. I seemed to be guided there. The second remarkable step in my recovery happened several years later when, after a despairing job failure, by good chance I began seeing a forward-thinking doctor who prescribed an epileptic medication, Tegretol. It helped me exceedingly. Thirdly, in 1985 I experienced a religious revelation that I should never forget. Then in 1991, twelve years after I became ill, by singular circumstances I came under the care of a physician who solved the puzzle. He prescribed an anti-psychotic drug which, in combination with lithium and Tegretol, brought my chemical imbalance into check.
Manic depression is incurable, but now I had the tools to manage it.
Next I needed to rebuild my life and my credibility.
Initially, I coped with mental illness very much as most people do: I denied it. This isn't particularly healthy nor is it tenable. But sometimes life becomes so desperate that there is little other course to take. Then, as I started to better accept the disease, I found I could speak freely to family and close friends about it.
In recent years I've worked harder at accepting the disease and rejecting the stigma which accompanies it. I have continued to enlarge the circle of friends and acquaintances, even an employer, who know I have an illness. I've become energetically involved in mental illness advocacy with the help of the Alliance for the Mentally Ill. AMI has given me great support and a platform to speak on mental illness to schools, churches, civic groups, and at local and national conventions.
The organization has done a lot for me, and I'm proud that I have contributed to it. Today I serve on the executive committee of the Board of Directors of AMI of Illinois; I am president of AMI of Illinois' Consumer Council (consumer is AMI's lingo for person with mental illness), and I am an executive committee member of the National Consumer Council.
I've also found an identity as a working person. When my illness was brought into check, that opened up a whole frontier to me as an employable person. I needed only find a field where I had talent and where I wouldn't be rejected for holes in my work history. I chose freelance journalism. The business is tough, but you're as good as your tear-sheets and you're judged on your promise.
I work both as a reporter and photographer. When I began, I took feature photographs around my town and meekly submitted them at night through the mail slot at the local paper, The Glen Ellyn News. Gradually I mustered up the courage to make myself known to them, and began to accept assignments. With a portfolio of clippings I later submitted my work to the Chicago Tribune where I was their freelance reporter in suburban Oak Brook. An added highlight: the Illinois Press Association recently awarded me a state-wide first place distinction for news photography.
The information on Mental Illness Policy Org. is not legal advice or medical advice. Do not rely on it. Discuss with your lawyer or medical doctor. Mental Illness Policy Org was founded in February 2011 and recently received 501(c)(3) status. In order to maintain independence MIPO does not accept any donations from companies in the health care industry or government. That makes us dependent on the generosity of people who care about these issues. If you can support our work, please send a donation to Mental Illness Policy Org., 50 East 129 St., Suite PH7, New York, NY 10035. Thank you. For more information, http://mentalillnesspolicy.org.