The Lost Years
"I wanted it ... I begged for it... I craved it."
He wanted shock treatment - demanded to have volts of electricity charging through his body, convulsing muscles and disrupting brain functioning in an artificially induced seizure. They call it therapy but they admit that they don't even know how it really works. Epileptics are given medication to suppress naturally occurring seizure activity because of potential damage yet psychiatric patients are given electroshock convulsive therapy (ECT) to cause the same effect.
It is still legal and is currently used for many different reasons. Lobotomies were also used similarly in past years until experience showed that this form of brain mutilation served the institution's purpose more than any other. Similar dynamics have formed around ECT. Fear of shock treatment has kept many patients in line and cooperative when the going got tough. Recovering from shock takes so much energy that inmates didn't have anything left to fight against perceived power abuses. The brain may be left physically intact but research indicates an unexplained permanent volume loss. Survivors of shock know of other losses--losses that can't be measured in clinical studies. Shock affects brain functioning. Thinking abilities are altered until even the intrinsic identity of its victim is threatened. It steals the memories that tie a life together in a cohesive whole. For one man, 25 years of his life were taken from him, lost within a system that denies responsibility for the repercussions of his prescribed treatment.
"There was a freak snow storm in April. It was blowing hard and cold. I was a taxi driver and the storm was good business for me. People call for a cab instead of risking driving under those conditions and I was working it for all I could get because I had a family to support. My younger brother Allan was home from the Navy. We had talked earlier in the evening but I went out to work. Later, he left a message for me. I worked through the night and in the morning I went over to my parent's place to see what my brother had wanted."
Regret catches in Wayne's throat He looks down before drawing a fortifying breath to speak through a pain that is as present as it was a quarter of a century ago.
I saw my brother's car in front of the house. Snow had drifted around it in a shroud. As I ploughed through the snow to reach the vehicle, my father came out to help shovel out. We cleared the windows and saw my brother still behind the wheel. He seemed to be asleep against the window. I thought that maybe he had too much to drink and was sleeping it off. As we pulled open the door, he fell out... and he didn't wake up.... My brother was dead." Sadness lays heavy as he pauses to draw together the strength he needs to push past his relived sorrow.
"There had been a hole in the floor of his old clunker. The carbon monoxide would have killed him within five minutes--less than the time it would take to warm up a cold car. The Coroner ruled it accidental but that was soon forgotten as others misinterpreted what happened. " He shakes his head in an effort to negate the maliciousness of others. "Would you believe that a social worker from LPH called my poor old mother years later and said that I was just trying to copy my brother's suicide. She hit her with this opinion which was based on wrong information without even caring of the effect on my mother. Can you imagine how my mother felt? She's going about her business in her own home and the phone rings. She picks it up and hears someone she's never met dumping this garbage which was based on gossip on her. It was bad enough that I didn't know what I was doing but my brother's death was not a suicide!" Anger flashes against a system which labeled and mislabeled himself and members of his family until the paper people created by consecutive diagnosticians bore no resemblance to the humans who had entered the mental health maze.
"I missed my brother. We had been close and now he was gone in a stupid accident that I tortured myself over. If I had not chosen to chase bucks that night, we would have been together. He wouldn't have been alone in that death trap of a car. I would have driven him. We would have talked. He would still be alive. It was all preventable and I blamed myself. He was only 24 years old."
It was grief. Now you'd go to grief counseling and talk it out. Back then, a man drank it out and I could drink pretty good. Then the drinking got pretty bad "
"I remember driving a bunch of Americans up to Minaki. They liked me and invited me to stay for some drinks. I drank and I drank some more. The cab was parked because I never did drive taxi when I had been drinking. It was my one good habit." He glances up with a quick smile of remembrance in appreciation of the small measure of self-control that kept him from drunk driving while working. No matter how much of his world spun out, he was committed to road safety in his own way. "Anyways, about three in the morning, they found me under the cab, trying to hook a hose up to the exhaust so that I could join my brother. They took me in to the hospital and I was admitted. My first diagnosis was reactive depression. I won't argue that-4 was depressed because my brother died. Drinking didn't help and I'm not making excuses for that. I found out years later that booze is a depressant. I could have avoided a lot of pain if I had known that then. I was diagnosed in January 1967 and got my first course of shock treatments because they said that it would help with the depression. I just wanted the pain to end so I would have agreed to anything. I trusted the medical profession and never questioned what they were doing to me. I just followed their prescriptions and it was all downhill from there."
"Each time I was released there were more drugs. One year I was on 17 different medications. The LPH kept sending more and more pills. My mother couldn't keep up with sorting the mailings so she started dumping them down the drain. it was a never-ending supply. By this time I was a binge drunk-a drunk who downed more prescription pills than most junkies. I never covered it up. The doctors all knew of my boozing. I'd overdose and they'd send me home with more pills to replace what I wasted when they pumped out my stomach. It was craziness "
"Hospitals were like home for me. Everything was taken care of There was nothing to worry about when you're in there-except for wondering how your family was making out. Except for the shame you lived with every time you had to shower in front of others because inmates don't have privacy. I trusted doctors and nurses to know what was best for me. Looking back I remember their sarcasm and threats when we didn't behave like good patients."
"They told me that ECT would help me. I don't remember much of it except they tell me that I kept asking for it-that I would get mad if I didn't get. I do know that I wanted the needle that comes before the treatment because nothing came after that. Nothing that I knew of anyways. It was just a forgettable nothing - oblivion. I am an addictive personality and I got addicted to shock. That's why I begged for it." He shakes his head in consternation. "Is that the reason they gave it to me--because I demanded it? Doctors don't give out drugs just because a patient demands it so why give out shock? In 1984, the Clarke Institute said that ECT was a bad treatment for me but I got more of it after that. Why? I have so many questions."
" My family kept trying to get it stopped because they could see what it was doing to me. My wife came to see me after one treatment. I didn't know who she was. My niece says the same thing. I didn't know her either. The so-called experts say that the amnesia after shock is temporary. I know different. I hardly remember most of my life now. I have to read my medical records to know what I was like or what they thought I was like. People tell me of things that happened and I have trouble believing but I don't have any reason to doubt them because their memories are the only memories I can rely on now-mine were stolen by shock."
Others do remember and witness to the effects of ECT and psychotropic drugs.
His sister Joyce and her family conscientiously visited Wayne whenever he was hospitalized in Thunderbay. Following his shock therapy sessions, disturbing patterns of behaviours occurred and reoccurred. His sister describes a typical visit amongst the many that the family made in their effort to support her brother in his anguish.
"When we visited him, he was in a locked ward. He appeared restless. His hands shook a lot and he paced back and forth steady. His face twitched and his eyes had a vagueness about them. His legs seemed to be moving constantly. Even if he did sit down, they still twitched. One time he didn't even know who I was." On discharge from the hospital, many of the behaviours which were not part of her brother's personality prior to his shock and drug therapy were still apparent.
"It seems that Wayne talked a lot but nothing made a lot of sense. He was in a depressed state most of the time. He seemed confused and almost in a world of his own. My daughter remembers how his hands shook when he lifted his tea CUP during breakfast. He was shaky and fell in our bathtub. Once my daughter described how while she was driving him, Wayne kept putting his seat down to rest and then would immediately pop it back up and begin talking again. Up and down he went, rambling on. Another time my husband drove Wayne and his wife back to Kenora after they had both undergone their treatment courses. He said that they were both very lethargic and subdued-almost like zombies. Both were normally very gregarious and social."
Medical files report repeated confusion after ECT treatments. Nurses, at various times, made notes as follows-(September 26, 1980)"mild confusion", (September 28, 1980)"when questioned, patient does not know day, month or year, or what city he is in", (September 29. 1980)"became very restless and confused", (October 2,1980)"post ect confusion. presently hypomanic", (January 29, 1982)"upon recovery patient thought that he was drunk", (May 1, 1984)"patient was somewhat confused on recovery" and Way 9, 1984)"Skipped Mondays as patient becomes high with too frequent ECTs".
Although, the experts claim that the after effects of shock are minimal and temporary, after recovery time and discharge, Wayne's daughters could tell from their parent's behaviour whether shock had been part of the treatment during their latest hospitalization.
"They couldn't focus very well for awhile. Their worlds just seem to get really small with just them in it to survive because anything else was too much to handle, took too much energy to understand."
Glynda, Wayne's ex-wife and now still his best friend, recalls the stress of life after each shock treatment. "Right after he'd get out of the hospital, something would happen. One time after shock he jumped out of the boat when we were on the lake. I was going to jump in after him but Annette said don't worry--he'll float and he did. There were lots of times like that." The stress of the multiple hospitalizations, the effects of the psychotropic drugs and the frustration of the alcohol abuse led to the breakdown of their marriage but they have remained enviably close and united in their respect and support of each other.
Wayne does have a physical reminder of his shock treatments-one that aches daily and affects his ability to return to his work as a taxi driver. "My back was injured during shock treatment sometime in the 70's. I wasn't even told at the time. A doctor whispered it to me in an aside, years later. I had complained about back pain for some time and just figured that I had injured it while I was drunk and nobody told me different. Later I find out that it was a fracture that happened due to insufficient muscle relaxants during ECT ... You know what's funny? I would ask for something for the pain but they never would give me anything because it might be addictive-what about all the other drugs?"
Like a weed, Wayne's ECT therapy grew from being a doctor's recommendation, to becoming a response to a patient's demand to something darker, even more invasive. In 1984, the Clarke Institute recommended that ECT therapy be discontinued. The report was reviewed and filed within Wayne's clinical record but the shock treatments continued.
"Once I got mad at the doctor at LPH. I said all you do is shock people, you don't help anyone. She told me to settle down or she would Form I me. I started to wonder about the whole thing because these people were supposed to be there to help me and she's threatened me just because I questioned her ... Another time, I remember being put in a room with a friend. He had drank Drano to kill himself Months later he called me to tell me that he wanted to do it again. I said, call your doctor, call the OPP, go to the hospital-get help. The next morning, the psychiatrist told me not to tell anyone else to go to the hospital because the government was going broke ... My friend finally did kill himself-shot himself I always wanted to ask that doctor how much money they saved by that suicide."
There was an incident that Wayne recalls in which he knows that he did not request the shock therapy but he received it anyways under questionable circumstances. "Something happened to my wife at the hospital and nothing was being done about it. I went to raise hell about it. Thunderbay had said that they didn't want me back but when I went to the local hospital to demand that something be done about the assault on my wife, I was suddenly sent back to Thunderbay for more shock treatment. It got me out of the way ... The attendant who did it, did get disciplined but there were never any criminal charges."
As a psychiatric patient, Wayne's life had become an endless dreary circle. "I'd be admitted to the hospital and get my therapy. Then they'd decide that I was good enough to go home. I'd be thrown back into real life with no supports-and I'd be working as hard as I could to make up for the income I lost during hospitalization because I had a family to support. The pressure would get to me until I just wanted to be stress-free for a while. Then I'd overdose so I'd be sent back to the hospital. Again they'd send me home with more pills ... To tell the truth. I wanted to die. Nothing ever seemed to change."
In 1992 Wayne crashed-literally this time. A serious car accident resulted in a charge of impaired driving. Knowing that a conviction would cost him his livelihood, Wayne mobilized. The accident occurred ten days after he had received another two ECT treatments. Wondering if this may have impaired his driving ability, Wayne began asking questions. The charge held because of insufficient information. Wayne lost his license. Unable to work, he began to reconsider his life.
"I think what changed it for me was that I realized that I could have killed someone else in that accident. I never wanted to hurt anyone else and thank God I didn't but I could have. That was it for me. I just decided - no more shock, no more drugs. "
It took fourteen months to clear the drugs out of his system but he did it--on his own. He began seeing an addictions counselor which he found helpful at the time. Unexpectedly, as the medication's effects left his system Wayne noticed that his urge to drink also left. Ms addictions counselor now wonders whether he was an alcoholic or if the drinking was a response to his treatment.
An unassuming man, Wayne looked only to himself to blame. He focused on the alcohol abuse and heaped burning coals of responsibility on his own head. He had noticed that without the drugs and shock, the urge to drink didn't seem to pull him into binges as it had in the past. After awhile more he began to note how well he felt-there were no more voices, no more anxious spins into depression, no more freezing of motivation. He was puzzled but continued to focus on his sobriety.
He brought in this information and a list of his prescribed pills to a pal on the force. On reading the list, the OPP officer shook his head and told him that several of the medications were known to impair driving ability. Stunned, Wayne finally faced what his family and friends had been trying to tell him for many years-the treatment treadmill that he had been on was destroying him.
Strengthened by his success, Wayne requested his medical records and began demanding answers. The system was largely unresponsive. He returned to the doctor who had prescribed so many of his pills to ask why his recovery came only after he quit following the doctor's prescriptions.
I went to my doctor to tell him how I changed my life. He said that it was a miracle. A miracle? ... I tell you it was fourteen months of hell that did it. He didn't want to give me any credit for my own recovery. He'd rather say that it was an unexplained miracle than take any blame for mistreatment."
Angered by the system's lack of accountability for his treatment, Wayne pursued justice. Pounding on doors that wouldn't open, he persisted. On discovering that there is a legal obligation on doctors to report to the licensing bureau regarding any drivers whose medical or mental condition impaired their ability to drive, Wayne cited his psychiatrist for not reporting him.
"For cripe's sake! I was a cab driver and they never warned me that any of those pills could affect my driving. They just kept sending me back to work."
His legal suit was set aside for a lack of evidence but the psychiatrist suddenly reported Wayne to the Ministry of Transport-three years after he had last seen him as a patient. Now that he had recovered from the conditions which would have justified de-licensing, Wayne was stripped of his driver's license. He has since regained his right to drive but is required to provide, at his own expense, an annual doctor's report certifying his good health.
Wayne's struggle to make the health care system accountable continues and several subsequent lawsuits have been filed. He continues his legal battling, not out of revenge, but out of his concern for others. His crusade on behalf of safe driving continues. Wayne wishes the medical profession to issue written cautions in addition to verbal warnings whenever treatment encroaches onto driving abilities. He explains, "You're given a quick explanation or warning at a time when you are least likely to be able to focus on it. Verbal warnings about the side effects of drugs and shock therapies are given when you're in crisis, not when you're thinking straight. At least if there's another warning in writing, there's a chance you may read it later when your head is straightened out a bit. Any extra chance is worth it when you're trying to keep the roads safer."
Overcoming his inherent shyness, he speaks out on other broader issues. Active in Sunset Country Psychiatric Survivors, he advocates for the rights of those who are caught in system which can hurt as easily as it heals. He's fierce in his defense of friends and Wayne has many friends-those who've stood by him through his desolate years, those he reached out to help despite the ache of his own needs and those he's met since his return to community life.
Like most shock survivors, he wants to see ECT therapy banned. In his advocacy role, he hears more similar tales of debilitation following shock treatment. He stacks up piles of research whose findings frighten him as he gains understanding of the effects of ECT. Living with those losses which he know believes were preventable is difficult. He has rebuilt his life again but it will never be as it could have been.
"Sometimes I think-25 years gone. I think of my children, grown up without parental direction. I think how my parents never saw me well. I think of all that was lost and of all the suffering and I get so mad but we've got to go on-use our experience to help others-make people aware of what shock does to human beings and we are human beings ... not just patients."