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,
There have been many medical incidences that have happened in my life that have almost made me cross to the other side. I was struck by a speeding car when I was ten years old. Most medical surgeries or stays in the hospital are because of injury and not for elective surgery, for which you choose to put yourself under the knife. What happened to me brought me very close to death, even seeing the light at the other end of the tunnel. It is hard to determine what elements of my life were already predestined before my injury. I was very young when my injury occurred. Everything I do now has been altered because of my injury at age ten. My injury has caused me to live my life differently, but the deficits have changed my life in a good way. I have accepted the challenge to accomplish things I never would had my life continued on my uninjured path. Having done them, a new world of possibilities has opened for me. Predestination aside, I concentrate on what did happen, not what could have …
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…