Health challenges
One thing most all individuals have total control over (except when moms and dads decided for us) is the time we close our eyes and go to sleep. So everyone more or less takes for granted the control of their consciousness and everyone has likely experienced times when they lost their consciousness, due to accidental falls, drinking too much, staying up too late...
So, one is to normally choose the time and "surroundings" of their sleep; bed, pajamas, covers, blankets, etc, etc, and "schedules" their loss of consciousness, each night.
However, the disabling disorder of epilepsy; tonic-clonic, complex partial, petit mal seizures, abruptly takes away one's control of that highly valued personal treasure.
Witnessing someone having a seizure and losing control of their consciousness terrifies and shocks everyone. This helps explain why nobody ever wants to deal with it - but the fact is, one could easily understand and alter their responses if they simply scan the many websites about epilepsy.
I remember, ironically, parts of what happened after the first one; I awoke, at age 10, lying down on something different. It was dark and I couldn't see anything around me. Then I saw a light shining through a crack in the darkness. I pondered if I was on my way to seeing what heaven was like. A few minutes later, my senses began coming back to me. I soon realized I was lying on a different bed than mine. Before long I was looking up at a ceiling I had never seen. A couple of minutes later I began realizing that the light I was looking at was coming into the room through a doorway. But even so, at that time I hadn't heard anything. About 20 minutes later, during which time I had just kept staring up at the ceiling, I heard a sound, turned my head, and saw a nurse coming into the room. Then, of course, I realized I wasn't in heaven, But in a hospital. As the nurse was taking my temperature and checking my pulse, she didn't even look or speak to me. After she left, a little while later a doctor came in. I don't remember everything he said, but I do remember him giving me a prescription and then firmly telling me that I'd best be sure to take my medicine, and to behave myself according to the rules he had given my father. If I didn't, I could have another seizure, and if so, I would likely swallow my tongue and choke to death! This myth is still present today!
By the time I was in my senior year in high school my seizures were, gratefully, well- controlled. I didn't feel as if I had epilepsy.
But in my late 20s they started flaring up; either severe tonic-clonic, complex-partial, simplex-partial or status epilepticus and by my mid-30s would become intractable.
Over those years, my doctors were trying all possible combinations of medication for me, but were unable to find one that successfully controlled my seizures. My next step was voluntarily taking part in two separate clinical drug trial studies. But neither one worked.
My neurologists then informed me that my options were to either keep suffering those intractable seizures, or choose brain surgery to possibly control the seizures. Brain surgery? Good grief! I immediately had all kinds of panicky thoughts and terrors whirling around: becoming a zombie, turning into an airhead... I remained thunderstruck, even while trying not to think about it. I couldn't accept the fact that there were only two choices left; have surgery or wait to keep trying new medications still in the developmental stage. It was a very difficult decision, believe me. I was frantic with fear and anxiety. I was so unsure, I couldn't really even conceive what to expect during and after the surgery. And, of course, the uncertainty of not knowing how well I would function afterwards continued to race through my head. My wife Angela had watched me agonize for days about the decision to have brain surgery or not, so she called me over and asked me to count up the times seizures had come close to killing me. Well, I had never looked at that aspect before. I reminisced and started counting out loud all the times I had nearly died due to the seizures, and she helped remind me of some - it was 28 times!
I decide right then that it would be a higher risk for me not to have brain surgery.
I was, of course, quite apprehensive when I checked into the hospital's epilepsy-monitoring unit on the evening before the first of my four surgeries. I couldn't relax. My mind was a whirling inferno of all kinds of fears: I may turn into an airhead, my lovely wife will leave me, I will never get to know my little daughter, I will lose my voice, I'll be shunned by everyone,... But as I was being taken into the pre-operative room, I suddenly became resigned and relaxed, having faith in God that things would turn out all right.
After the 84 wire grid was implanted on the left temporal lobe inside my head, I was taken off my medicines in order to induce seizures so that my surgeons could better see and locate the whereabouts of the epilepsy in my brain. It was pretty uncomfortable to lie in that small bed for that many days. This was especially true because I couldn't rest my head on either side. For wire attachment security, those bandages around my head were wound quite heavily. And, as I'm sure everybody knows, the food was not very appetizing.
In the late afternoon of the 13th day I did finally have seizures. A few hours after the last one the doctors came in and suggested the partial removal of the left temporal lobe of my brain suspected of causing the seizures.
The next day surgeons soon took me in for the procedure of the second surgery to remove the electrodes, along with the partial removal of the left temporal lobe of my brain suspected of causing the seizures.
I awoke, sluggish, a few hours after the second 12-hour surgery. I soon realized where I was and why I was in the hospital bed and that I would be leaving there soon and going back home. I was very excited and at the same time relieved, knowing I was "thinking" the same as before.
Over the next year Angie, I, doctors, - everyone - was watching the results of the surgery to see if it better controlled, or slowed down, the seizures. However, the seizures continued to occur.
At first I was dismayed and exasperated. Why haven't they been eliminated? Why do they keep happening? Will I have seizures the rest of my life... ? But I stayed positive and did not let any of it discourage me. I simply accepted the fact that the surgery didn't stop the seizures and reiterated to myself that tomorrow is a new day and things can change for the better.
I had my second set in November of 1994. That was the last thing I'd sought - but I had no other choice - it was imperative that my seizures be controlled.
Talk about tense! No, I was not looking forward to being in the operating room two more times.
The final surgery was quite harsh. It has taken many, many years for my brain to regroup not only its remaining memories, but also to reestablish my basic fathoming of reality. In actuality it took about 8 years, before I stopped coming across to everyone as somewhat of an airhead.
While my brain was regrouping its thought "process", I couldn't interact with anyone. Came across as being laconic or stoic to many people. That behavior of course had everyone labeling me as "flakey" or "off".
One thing I've told others was that after the surgeries I could remember the numbers one to ten but they just weren't in that order. More like five, one, nine, three... It took quite a few years to get those numbers back in order. I re-learned the expected picture of reality during those first few years through all possible avenues: listening to others' discussions, watching and reading national and local news, newspapers, television... while also philosophically reflecting about life. Throughout the 10 years following my surgery, my grasp of reality changed at varying speeds.
I've always kept looking, and still do, for the right words to best explain my surgery experiences. One of the main reasons I have talked often about my surgeries is to help others be more relaxed about the after effects (some of which are startling to others), and to realize that today's drugs and medical care have advanced immensely.
Being free of seizures, has given me the opportunity to lead a treasured normal life!
And that simple statement, to some/many of us, is like participating in a real, larger-than-life miracle!
Tom McGranahan
Providing quality counselling articles, hynotherapy writings and other mind help resources online, counselling hypnotherapist and life coach in London.
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