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A Story About Living with Epilepsy
Below are excerpts from a story that was submitted to the BC Epilepsy Society to share with others. It details the life of a fellow who had seizures since his birth in 1941. The author has led a challenging life, but his stories and reflections show how someone with epilepsy can persevere even with challenges that may seem insurmountable.
The Life of Jim Walker: Living with Epilepsy, ADHD and Dyslexia
"I was born with a malignant tumour on the left side of my brain, which controls the right side of my body. The tumour caused grand mal epileptic seizures as often as four or five times a day. I would pass out during these seizures, and when I regained consciousness, the whole right side of my body would be paralyzed and completely numb, and I would be unable to talk. If I did try to talk, it would come out as a meaningless mumble. The paralysis and numb feeling would last approximately one hour, during which time I would often hit my right side--mostly my right arm--with my left fist, to try to return it to normal. I couldn't understand the numbness, or why nothing on the right side of my body would work. The doctors at that time figured I might have four years to live if I survived the seizures, or didn’t choke on my tongue. I also spent time in the Toronto Sick Children’s Hospital where experimental drugs were used on me, with more needles than I could ever count in a lifetime. Apparently, I also spent time in Rochester, New York for the same reasons."
"When I grew older and started school, I had a dog that was always with me, even in the classroom. If I had a seizure, the dog stayed right with me until someone helped me home, or until I was able to get home myself. Often, I would have a seizure on the road, and as the roads had only gravel surfaces back then, I would get quite scratched up. At that age, I was probably having one or two seizures every day at school."
"Whenever I had a seizure at school, the teacher would try to keep me from swallowing my tongue by forcing a spoon or ruler into my mouth. This probably did more damage than good."
"I would be bruised most of the time from hitting myself with my left fist, and one time the teacher thought I was being abused and called Children’s Aid. They sent someone out to visit my parents about the bruises. Mom and Dad had to explain what I would do to myself, and how upset I would get."
"As I grew older, the tumour grew with me. I was often by myself, as nobody wanted to chum around with a “fit-taker,” or “Hey, stupid,” as I was called at school. I can remember telling Mom that I just wanted to be like the other kids. Mom tried to explain that I was not the same as they were--that I had problems and was limited as to what I could do, but I could never accept that."
"By the time I was eleven or twelve, I only had three or four seizures a day, and when I came out of a seizure, my right side would no longer be numb and paralyzed. At this age, I had two friends, Ronnie and Leslie, who I used to hang out with. Because of my ADHD, and the fact that I was determined to have as normal a childhood as possible in spite of my physical problems, the three of us pulled some rather harum-scarum stunts, and got ourselves into trouble quite a few times doing this. One of the things we used to do was hop on a slow-moving freight train, run along the top of the boxcars up to the engine, and stick our tongues out at the engineer. Then we’d run back a couple of boxcars, and jump off. "
"We really didn’t have a care in the world during those days. I don’t know how many times friends saved my life after one of my seizures. There were always people around to help if I need it. I remember the time Dad, his friend Bill, and I went out fishing in Dad’s 12-foot aluminum boat. I had another seizure and fell into the lake. I guess I was the biggest fish that was ever pulled into the boat."
"Because of my general physical impairments, it was virtually impossible for me to obtain long-term employment. My chum Ronnie, who worked for the Department of Highways, once got me a job as a roman on a survey crew. This was fine until I had a seizure in the middle of the road and almost got hit by a transport truck. The survey crew ran to try to save me, but the truck managed to stop just feet away from me. That was the end of that job."
"About this time, I met a fellow by the name of Donny Jack, and he and I became good friends. So, when I was drunk one time, I told him all my problems. I told him I had to leave the town--it was just too upsetting for both the kids and me. Roberta, especially, was blaming herself for the family problems. So Donny and I decided to go to Toronto-which we did, using our thumbs. There, I was hospitalized again because of a seizure. I was put back on Phenobarbital and Dilantin, which I had been on as long as I could remember. One reason, of course, that I was having seizures was that I was not taking my medications regularly."
"At any rate, after Donny and I split up, I heard of an organization called Crippled Civilians (now called “Goodwill”), where people with all sorts of disabilities can work regular hours and get paid. I managed to find a job there as an elevator operator, and there I met a girl by the name of Geraldine. She was working in the store, distributing and putting price tags on goods received. We started dating about a year later. By the time we decided to get married, I was working at People Credit Jewellers. While working there, I made Geraldine’s engagement ring and wedding band. After getting married in 1969, we moved into a one-bedroom apartment on Jarvis and Dundas Street. Geraldine was a great help to me because she could take care of me whenever I had a seizure--which still happened too often."
"Soon after we were married, Geraldine took driving lessons, and then got her drivers license. I decided I would like to get my drivers license, as well. So about two years later, I found a Doctor to whom I stretched the truth a bit, saying I hadn’t had a seizure for two years, and he filled out the necessary forms, and I did get my drivers license. Shortly after, in 1971, I bought a blue, second-hand Ford Comet. But one day-still trying to be a normal person--I was going to pick up my wife and son, when I had a seizure while driving. Two off-duty cops saw, right through the back window of a taxi they were in, that I was having a seizure. They rushed over and shut the motor of my car off for me. They checked , of course, and I had my driver’s license with me, but one of them drove my car into a parking lot. I called Geraldine to come and drive me, and the car, home. After that, she did all the driving."
"When my wife, Robert and Kenneth and I got back to Toronto, I went almost straight into the Hospital. A lot more tests were done to try and figure out if my malignant tumor, which was about the size of a walnut, could be removed. The doctors came in to talk to my wife and I, and gave us a choice. The tumor could be removed but the operation was very dangerous: it could kill me, paralyze me, or I could become a vegetable."
"At the time, my son Kenneth was about five months old, and I was fed up with my frequent seizures. I decided that I wanted to tumor removed. We got in touch with my family and told them about the upcoming operation. Annette, the caseworker at Browndale Homes brought my son Norman. Mom, Dad, my brothers and their wives all came to Toronto, not knowing if they would ever see me again, or what to expect."
"Because the doctors needed information from me during the procedure, I had to be awake while the operation took place. This started out with the surgeon removing a couple of pieces of my skull. But the he must have touched a nerve, for I lost my speech, and my right side was paralyzed for a few seconds. The Doctor looked me square in the eyes and I heard him say, “He’s stopped breathing.” Next, I saw nothing but white clouds, and then I was looking down at the doctors. The next day, I woke up in Intensive Care, Knowing who I was, and able to recognize Geraldine and the family. But my face was so swollen that my eyes were almost closed."
"In 2004, I was talking to John, a friend of mine who was a member of the Lions Club, and he told me about the possibility of me getting a Seizure Alert dog, and asked if I would be interested. We thought it was a great idea, so we made out the application forms and sent them in. Our application was tentatively approved, so Gloria, the dog trainer, who was with Dog Guides Canada in Oakville, Ontario, came out to talk with us and check everything out. She was satisfied with what she saw and told us we would be hearing from them. Apparently Seizure alert dogs cost about $20,000.00 to train from the time they are born; so the Lions Club kicked in $10,000.00 for a dog for me."
"Six months later we heard from Gloria, who told us she had a chocolate Lab named Wink for us. Gloria and Wink came to Kelowna by plane, where we picked them up and brought them to Salmon Arm. Gloria stayed at the Holiday Inn and Wink stayed at our home with us. Gloria came over every day to train Geraldine and I. Then we started taking Wink on walks and to the mall. Everything seemed to be going well, so after about a week, Gloria went back to Oakville. However, about two months later, Wink began to chase after people on bikes or skateboards. Then she went after a puppy that came up behind me, pulling me down onto the sidewalk, where I nearly hit my head on the concrete. Consequently, it was decided that Wink was not the dog for me, so Dog Guides Canada sent tickets for Geraldine, Wink and I to fly to Oakville, where Wink was adopted out to a farm family."
"Geraldine and I stayed right at the Centre for a week of training. I was given a black Lab named Flair that stayed with us while we were there. Gloria taught me to command Flair to come, sit, stay, get the phone, open and close the fridge, and open doors for the handicapped. If I moaned or started to shake she would bark, thinking I was having a seizure."
"We had a party after our week was up. The foster parents were there to say goodbye to Flair, Geraldine and me. We then left for Toronto to see Geraldine’s mother and sister, then flew back home. There, I had to train Flair to bark four times, then go and pull on Geraldine’s sweater for help. Geraldine can even be in bed and Flair will pull the blankets off her so she will come and take care of me. And I can hide either of the phones-cell or cordless-in any room of the house, even under my pillow in the bedroom, and Flair will find it and bring it to me."
"Things are slowly getting a bit more difficult for me. In 2011, my doctor insisted that I use a scooter to get around on the sidewalks with; I was breaking too many bones. For about the last three years, the muscles behind my knees have been suddenly quitting on me-particularly on my right leg, and I suddenly collapse without warning. This may be caused by osteoporosis or malfunctioning nerve endings from my back being broken. We just don’t know. So now, my dog Flair gets her exercise every day, running along beside me when I’m out with the scooter, but I’m worried that my legs aren’t getting any exercise. I haven’t had any seizures for over two and a half years now, but I was recently diagnosed with Alzheimer’s, so I thought if I was going to share my biography with anyone, I better do it now. It’s quite amazing, actually, that I’m still on the green side of the grass. I’ve been living on “borrowed time” for longer than any doctor believed I would. If I died tomorrow, I would have no regrets, except for the sorrow I may have caused a few people."
Posted by BC Epilepsy Society at November 15, 2011 12:15 PM
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