Excerpted from an interview with Dr. George Brewer University of Michigan, Ann Arbor
This a rather grim chapter in my life, but it needs to be told. I have Wilson's Disease. Wilson's is a genetic disorder of the liver. I have had it since birth, however it did not start manifesting itself until I was well into adulthood.
This is my story:
I started noticing some difficulties in 1988, when I was 32 years old. I had just finished my second "tour of duty" at Disneyland and had gone back to copier repair in the desert town of Hemet California. I worked for a man who sold copiers out of his apartment. I was his "service crew". It was an uncomfortable relationship. He was an alcoholic and subject to erratic behavior. I was quite even tempered normally but I found myself being drawn into arguments, I also started squinting, drooling a little out of the corners of my mouth and my handwriting was changing from bold and open to a minuscule scrawl. My speech had also changed from a lilt to a robotic monotone. I imagined these to be signs of unrelated maladies. I got glasses for my squint and dental work for my drooling. The other symptoms I figured were simply due to irregular sleep patterns. I had also started dropping weight. At my adult height of 6' 1/2", I went from an all time high mark of 285 pounds down to 165. I still ate voraciously but the pounds kept shedding. I resorted to eating a half gallon of ice cream a day just to maintain my weight. All this time my symptoms worsened. The most deadly of these, my anger became almost unmanageable. I left Hemet after a year to work for a real copier firm in Cypress California. It was there I found I could not manipulate my tools or handle small parts without dropping them. I quit rather than destroy a reputation for excellence I spent almost ten years building. I ended up assembling bicycles and furniture for department stores. After only a month I couldn't even do that. Thus ended the last full time job of my life.
Thus ended the last full time job of my life.
This is me at age 33. I was a single father with a ten year old son and unable to care for either of us. After 11 years out on my own, I moved back with my parents. My parents took us in and supported us, but they suspected drug abuse to be the cause of my condition. They watched me very carefully. It wasn't long before they realized it had to be something else. By this time I had started tremoring in my hands and legs, I had trouble swallowing and I was scared and angry at the world. It took me 10 seconds to count to ten as fast as I could. (The average time is 3 seconds, try it yourself). I looked and acted like I was profoundly retarded. I could still feel the person I used to be was in there someplace, shrouded in the fog. I had the temperament of a spoiled three year old. Most days I just sat in front of the television wondering if, or more mercifully, when I would die. By labor day 1989 I could no longer feed or dress myself in anything but sweats and pullovers.
That Labor Day was my turning point though. I watched the Jerry Lewis Telethon and saw a segment on A.L.S., Lou Gehrig's disease. The symptoms mirrored my own. After a week or so I was at the MDA Clinic in Loma Linda California. They determined it was not neuromuscular in nature and referred me to Loma Linda Hospital's neurology dept. It was there I was diagnosed and my treatment began. The first priority was to get me detoxed. The prescribed treatment is penicillimine, a derivative of penicillin. It leeches the copper out of the fatty organs and releases it into the blood stream to lower the copper levels through attrition. It had a nasty side effect though. My body had several times the normal levels of copper. In fact if I hadn't been diagnosed I would have more than likely died in a matter of a couple months. All that copper being dumped back into my bloodstream turned my circulatory system into 50,000 miles of copper wire. My synapses were cross firing like mad. My tremors escalated to severe wing flapping motions and my awareness of my surroundings dropped to an almost autistic level. My mother asked the neurologist what my chances were for recovery. He replied there will be some improvement but I would not get a whole lot better. His words cut through the fog.... If it was the last thing I did, I would get better!
If it was the last thing I did, I would get better!
The condition I have is rare and unfortunately diagnosis is even more uncommon. Many are the poor souls who died in hospitals or mental institutions, never knowing why. Those of us who are diagnosed tend to gather and share our experiences and knowledge. It was at one of these gatherings that Mom and I first heard of Dr. George Brewer. Dr. Brewer is at the University of Michigan at Ann Arbor. Over twenty years ago he started research into sickle cell anemia. In one trial he gave patients large doses of zinc and noticed a drop in the copper levels in their blood. This interesting side note caught the eye of another physician who said it just might be a suitable treatment for Wilson's Disease. Dr. Brewer has devoted his medical career to proving just that. Getting back to me now. Mom and I were dismayed that I was showing no improvement. In fact I had gotten worse. Mom asked my neurologist about the experimental program. He explained that it was just that, an unproved experiment and he strongly recommended we abandon any thoughts of going there...
Two weeks later we were on a plane to Detroit....
The fog that had enveloped my mind had indeed turned as tangible and immense as an ocean. My body was at war with what little rational mind I had left. I feel it was particularly devastating because my hands were my life. Without them, my art, my career everything was gone! Only people suffering like I was can know the envy of watching people bringing a cup to their lips without spilling, to run there fingers through their hair, the simple act of holding hands or the joy of holding a baby in your arms. I was mad at the world. I was thrown out of stores and refused service in restaurants. I watched as people turned in fear, disgust and horror when I asked of them the simple kindness of putting my dime in the slot and dialing zero. Yes, I was a very angry 4 year old. I was to stay in the hospital for 4 weeks. Mom came along and acted as my care giver. We were in the experimental medicine ward. My first two weeks I was on a controlled diet of my favorite foods. They had to be my favorites, because I was fed the same meals measured to the centigram every day. I never thought I would ever get sick of chocolate pudding...... but I did! I was also given the new treatment. 50 milligrams of zinc acetate three times a day. I had tons of blood work and every single thing that went in or out of my orifices be it liquid or solid were weighed, measured, tested and charted. The poking prodding and monotony were getting to me. I missed my home, I missed IN 'n' OUT Burger and most of all I missed my son. I was ready to crack. .....which I did. Two weeks into the program I wanted out. No rational reason, I just wanted out. Dr. Brewer and the staff psychologist came to visit me. They explained I was not a prisoner and I wanted out, I could go. For a reason I didn't figure out until years later, I stayed. The reason was, I was treated like the a rational, thinking human being. A few days later the ocean started to empty. All of my meals were administered in a small dining hall under the watchful eye of a dietitian. It was her job to see that I ate every bite. My mother would spoon feed me as I could not do it myself. One day Mom was out with another mother of a Wilson's patient and was not there for the start of my noon meal. Self conscious as I was, I did not ask a nurse to help me. I grabbed my left wrist with my right hand, braced both against my chest to steady them, picked up the spoon and tried to feed myself. A good 40% made it to my mouth..... at that moment, I knew I was getting better. The ocean had dropped a good foot.
Needless to say I am much better now, but I still have my battle scars. My speech is still a tad slow, my short term memory is poor and neither my mind or my hands are quite as agile as before. However, this trauma did show me the strength of my will. I now reside in rural Idaho now on a three acre farm. I have a mother, wife, daughter and son who love me unconditionally. I have my dearest friends Susan, Carol and Anita who accept me for who I am. I have loving pets as well, Nicodemus, Mr. Squiggles and Vanilla our ferrets, Twi and Mephisto our dogs, and Spooky the damn cat. I have a silhouette portrait business in the summer, I teach art in Pocatello during the school year and a I paint and do pastels whenever my muse inspires me. Author's note: In case you don't recognize the music that played in the background, it is "God Help the Outcasts", One of the most beautiful pieces of Disney music since "When You Wish Upon a Star". It is from "The Hunchback of Notre Dame".
However, this trauma did show me the strength of my will. I now reside in rural Idaho now on a three acre farm. I have a mother, wife, daughter and son who love me unconditionally. I have my dearest friends Susan, Carol and Anita who accept me for who I am. I have loving pets as well, Nicodemus, Mr. Squiggles and Vanilla our ferrets, Twi and Mephisto our dogs, and Spooky the damn cat. I have a silhouette portrait business in the summer, I teach art in Pocatello during the school year and a I paint and do pastels whenever my muse inspires me.
Author's note: In case you don't recognize the music that played in the background, it is "God Help the Outcasts", One of the most beautiful pieces of Disney music since "When You Wish Upon a Star". It is from "The Hunchback of Notre Dame".
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©Lawrence Elkin 4/16/2003 Updated 4/16/03