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.
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…