I'm blessed with being able to control my tonic-clonic seizures via meds. Nonetheless, I hid my condition for 36 years. Finally tired of the stigma against epilepsy, I began opening up, choosing moments (ideally somewhat casual ones) to tell people I knew well of my epilepsy.
The stigma against epilepsy is culturally based, as well as a product of ignorance. It's up to us, through open discussions and teaching others, to change the perceptions about epilepsy, do away with the stigma.
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Guest Blog by Shan O'Meara: Keep It Positive!
My traumatic brain injury is, without a doubt, the biggest challenge I have had to face. The resulting epilepsy is another huge obstacle, coming in a close second, but second nonetheless. Both of these handicaps have left me with side effects that will exist until the day I die. I have to accept them because it is what it is and they will never go away. The facts are these: I was struck by a car, resulting in epilepsy 10 years later. That’s what happened. It is undeniable and can not be changed.
The seizures, not knowing where or when they will strike next, have altered my life in many ways. I recall once at Disney, right before a ride, a warning sign said beware if you have epilepsy. I thought I could take it, go on the ride without any repercussions and go on my way. Initially, I was fine. No seizures, felt normal. It wasn’t until later that night, 4 to 5 hours afterwards, did I have a seizure, right there at Disney. So, it may not be immediate, but if it might happen, beware.
Another example is when I play a sport. I have to be extra careful when there is a possibility of a head concussion that might cause a seizure. Even if I wear a helmet in football, there will always be a greater chance just because of the nature of the sport. Not so much in baseball, but I never could play baseball, so the chance of the ball hitting me instead of the glove, would greatly increases the chance of a head injury. Hockey would be the worst for me, a total nightmare. Slick ice. Inability to ice skate. Both lead to a concussion on the ice.
As maddening as it has been for me to live with epilepsy these past 24 years, things could be worse, much worse. It is good for me that they weren’t. The side effects of my medications and the fear of having the next seizure -- however much I don’t want them to exist -- will always be with me, no matter where I go or what I do. There is no machine, no magic pill, that will make the past different. The past is a fait accompli. It is set in stone.
One of the most important things anyone can do is be positive and, as time passes, so will your life, It always does. I remember when I first injured, I could barely walk or talk, for that matter. Agreed, it’s been over 30 years since my accident and 20 years since my epilepsy started, but my life has gotten so much better. Over the years, I have …
Learned to talk.
Learned to write.
Become able to think again.
Gone back to school.
Gotten my Bachelor’s of Arts degree from college.
Written several articles that have been published.
And so much more. Life keeps getting better and easier for me the more I try. If you give it the old college try, you can succeed anything!
Remember: The only thing that can be changed is the present and, in doing so, your future. And that’s a great deal that you have in your power to direct. Your present will predict your future, so make it a good one. If you do, you won’t have any regrets.
We’re the lucky ones.Our epilepsy is controlled with meds and we live full, productive lives,
only very occasionally – if ever – interrupted by seizures.Our epilepsy even may be invisible to you.
please don’t be surprised when I tell you that I schedule my days according to
the ebbs and flows of the meds that keep me running on time.
When I wake up, I’m at my best.I haven’t taken carbamazepine and lamotrigine
for eight hours, but there’s still a therapeutic level in my bloodstream.I schedule my most important meetings in the
morning when I’m clear-headed before taking my first dose. Morning: Whoosh.There goes that first mega dose.It hits, and I have to be seated and try not to put myself in a position
in which I have to say anything important.If I bend my head down, I’ll go toxic and need to lie down for over an
hour.If I take my Vitamin C, my blood
will rush a little, and I’ll also go toxic.Lunchtime: One tab of lamotrigine?Not so bad.Evening: I take another,
I look up into all the faces – the concerned, the horrified,
and the ones rushing to lift the stretcher. “I’m sorry,” I mumble.And then I lose consciousness again.
I’ve just had a tonic clonic seizure, and I’m embarrassed
and overwhelmed by the fact that I’ve caused so much trouble.I know.I know.It’s not my fault that I
have epilepsy, though the “I deserve its” of adolescence still creep in from
time to time.Nonetheless, I feel I must
apologize. But what am I apologizing for?Is it that I have epilepsy or something else?
Here’s where I squint, trying to find
the source.My seizure definitely has
been an inconvenience, both for others and me, and it’s scary, especially for
those who don’t know I have epilepsy.I
forgot to take my meds, which is what led to all of this trouble.I need to apologize for that, but I also
should apologize for not having told some of the others that I have epilepsy
and instructed them on how to deal with it.
Rationally, I’m clear on what should be the bases of t…
How do you feel when you have epilepsy and [fill in the blank]?We often hear about “co-morbidities” (does anyone else hate that word?) with psychiatric disorders, cognitive disorders, migraines, and sleep disorders, but there are, of course, others. Nonetheless, we with epilepsy may live with entirely unrelated conditions that affect our quality of lives and fear levels. How do we handle it all? I have epilepsy + smoldering myeloma (symptomatic multiple myeloma) and in no way can I be viewed as a model of how to deal with both of them, especially together. My solution: Denial. For many years, I hid my epilepsy, took my meds by rote, and pushed down acknowledging epilepsy until I no longer heard my thoughts banging away at my consciousness.I didn’t accept them, and, as my seizures are controlled with my meds, it was pretty easy to do so for many years. And my myeloma? When it was first diagnosed in 2003, my oncologist told me that I should begin getting my affairs in order – transla…