Tracey - posted on 04/05/2009 ( 1 mom has responded )
Throughout our lives none of us know what challenges will be dealt to us. Some may have more devastating challenges to overcome than others, but I believe we are all given these challenges throughout life in order to teach us various lessons...
It was about 14 years ago now when I met a man by the name of John, through my local Epilepsy Organization. At that time I never realized how much John and many others like him have been through. John came into my life, back, when I myself, was grasping to gain some control and understanding, on what the purpose of living was with such a relentless and cruel disorder. And though I’ve continued to struggle within over my own epilepsy, I’ve still been able to continue to push forward helping others. Though I never expected to achieve certain things such as speaking publicly about epilepsy, and being an active Board Member and President for an Epilepsy Organization; doing these things have helped me to have a much broader outlook on what it means to realize possibility. It’s now been almost 15 years for me, and with my own personal battle with uncontrolled seizures put in a place of acceptance, comes a constant determination to keep fighting through writing. As well, it gives me a great sense of accomplishment to know I can be a voice for those around me who can’t.
As I continue to work on some other goals, today I am honored to be able to share John's story. This story is written with the utmost love, respect, and consideration for all of John’s family and friends. Due to some of the content in this story, John wanted me to be clear that he is always very thankful for everything and all of the people who are a part of his life. Please know that John shares these intimate details in hopes that you will read his story with an open mind. And he hopes his story will be helpful to others.
HERE IS JOHN’S STORY...
What could one say about John? For anyone who knows and loves him, he is one of the most genuine, good-hearted guys I know. John came to be a well connected part of the Epilepsy organization long before I ever entered into the picture. One of John’s biggest dreams from the time he was a teenager was to get his driver’s license. And with the assistance of Epilepsy H.P, plus his family, and friends in the community that dream came true. John was finally able to obtain his driver’s license in 1989. Now John loves to drive. He doesn’t care where, just as long as the mission has him behind the wheel, he’s happy. John likes to help out with all of our events; he attends support groups, brings people out to our social dos when they can’t drive, he helps us deliver our glads during fundraising in August, and John likes to check in on the girls in our office and bring treats. John is, your all around nice guy.
John was born in May of 1951 and has lived and worked on the family farm outside of Seaforth for most of his life now. Unfortunately, at about the age of 7, John fell from a beam in one of the buildings on the home farm. It was this unfortunate accident when John was a young child that triggered his first seizure and set in motion what would lead John through several experiences that no one should ever have to endure. During grade 2, John’s seizures were causing some serious problems. He lost his school year due to the time spent at sick children’s hospitals in both Toronto and London. Over time, doctors traced the origin of John’s seizures back to a birth trauma. Also, tests indicated John had experienced a mild form of seizures during his infancy. For John’s family this must have been a very devastating time; taking care of a loved one with a seizure disorder can face many worries and challenges. And John grew up in a time when people who had epilepsy were often looked down upon or were made to feel worthless, like somehow “they” had done something to bring this terrible disorder on themselves. Some people have even thought people with seizures are crazy.
John continued to experience uncontrolled seizures throughout his school years. When John was 16 he went to see the doctor to find out how he could get his driver’s license. But John’s compelling desire to drive was questioned. So, under a physician’s advice, John was sent to stay at a psychiatric hospital where tests were done to determine John’s mental state of mind. At the time John’s family never thought to question things. And John just thought he was going to a place where there was a t.v., friends, and people to help him get his dream-his driver’s license. In John’s teenage mind he saw it as a vacation. But John was young and naive, he had no idea he was going to a psychiatric hospital. Not only was it very quickly determined that John was a person of sound mind but he was a conscience, caring, intelligent, and sensitive individual. What professionals failed to recognize was that by placing a sane child into such an atmosphere; would place John at risk of lasting emotional scarring.
In the past, some of these hospitals had rooms where patients would sometimes be left without their clothes and people passing outside the room were able to view these patients through a glass window. Memories of those times for John are memories that he constantly questions; there was no regard given to him for his feelings or his privacy. As a young man, John was robbed of his dignity and treated in a way that made him feel belittled. The negative effect on John’s psyche has been phenomenal.
When John was in his early 20’s he had an opportunity to go out West for work. Shortly after returning West after being home for Christmas holidays, John was extremely down on himself and was found attempting to step out into traffic. Authorities transferred him to a psychiatric hospital where John’s parents picked him up and brought him back home. Again John would be subjected to more psychiatric hospitals. (Disorders like Epilepsy and the medications needed to control seizures can often contribute to one’s moods, memory, and temporary mental state of confusion. And this can often lead to depression. THIS DOES NOT MEAN AN INDIVIDUAL IS CRAZY!)
John became a candidate for brain surgery at London’s University Hospital in 1985. After John’s surgery he had four trauma related seizures and has now been seizure free since 1986. Up until John’s surgery, his seizures were interfering with a large part of his quality of life. Though John is extremely grateful for his surgery, a successful surgery doesn’t automatically mean all problems solved. Quite often there is a trade off with brain surgery. Sometimes a person can lose the ability to function at an average academic level. They can also lose some functioning in their ability to read and write and multi-task. And often short and long-term memory is affected. Also surgery doesn’t necessarily mean no more medication. Since John’s surgery, he has had to come to terms with the many adjustments; the various gains verses some of these losses.
John had hoped to make his family proud one day. He always wanted to run the family farm, get married and have a family of his own. Instead, John continues to deal with the day to day reminders of his past, often feeling frustrated and lonely. Over the years, John has spent time in and out of psychiatric care with physicians, and family, and friends always leading him; telling him what he needed, felt, or should or shouldn’t do. And in his inner battle to love and accept himself, he often questions if his thoughts are appropriate. All of these things coupled with the past and present struggles related with Epilepsy, have contributed to John’s physical and emotional confusion. As John continues to struggle to find peace and acceptance, I admire his warm hearted strength. John always continues to find ways to make the best of his situation. He is always welcoming, and always enjoys helping others. And if you’re out and about in Seaforth you’ll probably catch John in town for a coffee or two!
TRACEY ALDERSON, ADMINISTRATOR, EPILEPSY AWARENESS 2009