For about two years before Charley underwent brain surgery seizures were the driving force behind every emotion we felt and action we took. We could not plan anything because seizures seemed to know if we became excited about participating in life and they robbed us of most planned moments of joy. Charley and I spent less time together because I had to take care of all of our vehicle and home maintenance. We had a riding mower but mowing and weed eating four acres is not an easy or quick task for one person to accomplish.
Even if Charley was not literally having a visible seizure his mind was so weakened by the continual seizures in time all he could do was get dressed, eat the meals I provided for him and sit in a recliner day after day. The back of his head wore holes in the upholstery of the recliner due to his inability to function. I took a picture of Charley on one of those days and it is included in this post.
I look back on those times and realize how terrible it was that all life with epilepsy had to offer Charley was being incapacitated. But, because he was sitting up in the recliner able to talk we both thought he was doing fairly well. At least he was not having tonic-clonic seizures constantly. Our life had been seizure ridden for so long we did not know what a good life could be nor did we completely recognize how bad our existence had become. We got through every day doing what had to be done to survive and hoping for a better day tomorrow.
Eventually no better days came and every type of seizure took over Charley’s mind and body. His psychosis was out of control and aggressive behavior unbearable for both of us. His neurologist, an epilepsy specialist, told us Charley was suffering with clusters of seizures twenty-four hours a day and offered us hope to eliminate those seizures through brain surgery.
After more than a year of tests that eliminated reasons for Charley not to have the surgery he was declared a good candidate to “have his head cut open.” (those were Charley’s words)
Charley chose to undergo surgery in the hopes that the surgery would eliminate his seizures but his overall goal was much broader. He hoped having surgery to eliminate seizures at the grand old age of 57 might help others in the future as they made a choice about brain surgery.
If your life has been taken over by seizures do something about it. The smartest thing we ever did was taking Charley to EPILEPSY SPECIALISTS. I am not talking about just a neurologist. There are many treatments and medications that a neurologist can prescribe but if you are not seeing an epilepsy specialist you may not be getting the best treatment available.
The first time we consulted with a neurologist who specialized in epilepsy he nonchalantly stated that his goal was to see Charley become seizure free. I thought that to be one of the stupidest statements I had ever heard. Two years later Charley was seizure free and I am amazed to this day.
After brain surgery we loaded that recliner in a pickup truck and Charley drove us all three to the garbage dump to throw that part of our past life away. I do not know what role epilepsy plays in your life but I do know if seizures rule every moment you need to seek help. You might get lucky and have a doctor tell you he is going to eliminate your seizures and in spite of all your doubts that may just happen.
