One Woman’s Evolving Epilepsy Cycles

Life cycles through different stages.  In Feminine Wisdom we know about the main three that influence the developmental cycles of women:  Virgin (or maiden), Mother (self-explanatory), and Crone — or as I like to think of the last — Wise Woman.

I am at the Wise Woman stage.  I’ve noticed and experienced many sub-cycles within the larger ones.  All of us have.  But one sub-cycle that is rarely talked about is those cycles that a woman* with epilepsy can go through — or, more accurately, the evolving nature of the disease and how it can impact us.  It is not static.  (*I’d include men, but I have no current details about their gender-specific experiences).

And I’m betting that I have not been alone in experiencing many of these cycles.  I  hope that any others with epilepsy who find my observations familiar or, conversely, disagree with some of my comments will respond with their own and add their own experiences in the “Leave a Comment” section.  For those readers without epilepsy, I hope this is educational — maybe even enlightening.

When I was a maiden, I had absence seizures, diagnosed at age 4. Back then, they were called “petit mal” seizures.  The doctor let my parents know that when I reached puberty, the epilepsy could either disappear or escalate.  There was no way to know for sure.  So we all had hope, and besides being constantly nagged, “Did you take your pills!?” epilepsy didn’t have a huge impact on my childhood, at least from my perspective.  This was the first cycle of my epilepsy experience.  I was blessed, as I knew nothing of living without seizures.

My first grand mal (meaning a full-out convulsion) at age 12 took place rather dramatically in my 6th-grade classroom.  In an aura, I suppose, I remember the boy I had a crush on laughing as I went down.  It could have been the ruin of my budding social self.  But I consciously chose to return to the classroom a few days later to hold the ridiculers in disdain — to consider those who would mock me as insensitive jerks.  I went back with my head held high.  It seemed to work; I wasn’t bullied or shunned.  Because I went forward as if all was fine, so did my classmates. So began the second season of my evolving relationship with epilepsy.

I was lucky.  I only had grand mal seizures infrequently, usually around my menses as I came, in time,  to notice.  The doctors back then were adamant that there was no correlation.  (Now they know differently).  As a young adult, my seizure pattern became sort of reliable.  I was able to manage my seizures enough to have a life.  I went to college, got a job, was fired from that job because of an epilepsy-related issue (I didn’t drive), and married.  I became self-employed.

But as my motherhood years rolled around and became fewer, I realized I was afraid to have a child. Being responsible for myself felt enough — to be responsible for an infant also made me anxious. What would happen if I had a seizure while holding my baby?  I decided I’d have children if I met & married a supportive man who would be an active parent.  I never did.  I married twice, but both men were not interested in having children.  During the better part of those years, I was busy running a business and chose not to notice as my time for mothering rolled by. Besides, the business was my baby!

After selling that business, I spent nine years volunteering with an epilepsy advocacy organization.  Learning a great deal there, I came to do a fair amount of epilepsy education.  I traveled around the country and spoke about epilepsy issues and successful seizure management from a patient’s point of view.  Often I spoke of gender differences, having worked on that specific topic.

This last was an empowering cycle.  Though I switched medications a few times, had some bad patches, etc., I had made that part of me — the person with epilepsy — public and found I had a role to play and could be helpful in and for that community.  It was very fulfilling.

In the Wise Woman years, I had assumed  I’d be okay — less hormone interaction, on the anti-epileptic drug that gave the most control with the least annoying side effects (finally!).  I’d envisioned being entrenched in a supportive community with my second husband by my side.  Not to be.

Frankly, now I am a bit frightened.  My seizure type and pattern have changed.  Or seemingly so.   The supportive husband has fled.  My siblings all live far away…and I don’t know how to manage this new set of circumstances.

And I must learn to maintain my independence and well-being.

Meanwhile, the docs are having difficulty finding appropriate meds.  I was on one that I liked a great deal — no breakthrough seizures and few noticeable side effects.  Or so I thought — my dream medication caused some organ stress, and I had to get off it.

For those of you who know about epilepsy, you know how difficult and risky switching your meds can be.  I’ve learned to set aside a month of living my usual life to switch responsibly.  It involves the tapering off period while slowly adding in the new drug — watching for serious or simply difficult side effects.  The nausea, dizziness, and cognitive fuzziness can set in while my body readjusts.  The seizures that can occur.

I dislike asking for help.  Gawd forbid I should inconvenience anyone!  (I’m trying to work on where that came from).   Most people do not understand what is going on in a medication change,  the level of risk, and how vulnerable I feel.  It’s my issue and problem, after all.  And the epilepsy cycle that is going on now has me quite up a creek.  Who knew I would be at this point now?  Not me.

And I wonder:  is this the last cycle in my epilepsy evolution, or are more to come?  I gotta stay tuned, don’t I?

Dang — no rest for the weary!