Hidden Uniqueness of Seizures: Wisdom Gained
(This is a continuation of Part I, this time with newfound wisdom found sixteen years later as a now 39 year old woman with intractable epilepsy.)
It is true my actual diagnosis came in 1970 after exhibiting mysterious aura-like seizures a four-year-old called a "tummy ache". After extensive questions and every lower GI test, it was discovered the trauma was in my brain. After the first diagnosis of petit mal epilepsy, many others came: complex partial, then simple partial, and catamenial.
I do remember a few scant memories in retrospect. Even being faced with a confusing disorder, I now can say through the years I've learned the missing understanding and acceptance of what is written on medical tag. I don't wake up wishing my nightmare would end, but I rather constantly adapt and find solutions to what "cards I'm dealt".
Since my first seizure in that disorienting classroom, my seizures have always felt the same. The main difference is the length, severity, and frequency, sometimes absent warning, injuries, strange side effects, and blackouts. There were times that seizures occurred like evil twins, back to back, another occurring after the closure of the first seizure's postictal stage. (Most of my injuries happened during this time.) Careful examination of the accident scene would always follow so I could try to prevent it from happening again. I created a plan that allowed me to hang on to anything that was around me to prevent myself from getting up and possibly causing further injury during those "evil twin years". Incontinence is not a part of my life now. It did occur during a period in 1995 when I was having predictably three hours of status simple seizures each morning like clockwork. I wore pads to protect myself from embarrassment during these years.
I have had a few partially conscious seizures that are far more torturous than complete blindness and deafness. To hear your head hit like a bowling ball on the floor of a supermarket and witness people casually strolling by looking by you is something where the adage "ignorance is bliss" applies.
Even after being intractable for 30 years there is no moment where I can honestly admit that I became a "pro" at handling the traumas. It was always frustrating as I used to think, "I should have this down by now!" Daily coping and adjusting is imperative to deal with if my pills work or if they do not. (Seizure control plays a major part of how much "coping" you must do naturally.)
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