As I edited, revised and entered on my laptop numerous writings about my experience with epilepsy, I came across this Essay. Once finished with revisions I realized that it had never been one of my blog posts. There were certain things missing that are on all my post copies, but I checked anyway. So today, I’m sharing this with you. I think my original goal was to go in a bit more depth about this uninvited guest. As I wrote it several years ago but never completed it, I may not have achieved my original goal. (I did learn today that epilepsy is a brain disorder not a disease.)
Epilepsy – idiopathic epilepsy no less! As a 19 year old and a new mom in nurses training this could not have been a worse piece of news. My oldest brother had epilepsy. But me? I had watched his first seizure, a full tonic-clonic seizure, one Christmas morning a very long time ago. It was really quite frightening in its sudden violence. I didn’t know that, in just a few more years, it would be me that frightened others.
How has that impacted my life? In the long run? Very favourably. My good fortune has been that I have not experienced a severely brittle form of epilepsy. However, the first ten years of my life with this uninvited guest were frightening and confusing to me and my family resulting in many anxious confrontations over whether or not I had taken my pills. My husband left for work many days worried that his children had been left in the care of someone who did not appear responsible for her own care. Our children were in the middle of our confrontations. It took me many years to get past my stubbornness and recognize that if I didn’t take care of myself, my children were potentially in danger when in my care.
Epilepsy, a chronic neurological brain disorder, is caused by a variety of things including scar tissue and altered brain chemistry. A more confusing form is epilepsy known as idiopathic, meaning no known cause! Where there is no known cause, there is is no known cure, leaving me in an entirely vulnerable position. I felt powerless and alone. Conventional medication seemed the only solution, and was the only part of a solution that I recall being presented to me.
A solution did present itself when listening to those successfully active in Twelve Step programs practiced by those with addictions. Addictions you say! The recovery principles embodied in the Twelve Step programs are a set of guidelines that ultimately promote healthy living, just as a diabetic diet is a healthy diet for any human being!
Should I still go to my doctor then? Of course. If, like me, you require a level of pharmacotherapy for seizure control, a physician is the appropriate therapist. As that therapist, his/her job is to prescribe, provide education about the medication and encourage you to follow the directions given you. Those directions may in fact recommend lifestyle changes.There may also be health changes of any kind, including one's epilepsy status, that require further medical management by a physician.
“The question is not how to get cured, but how to live.”
~ Joseph Conrad
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