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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Here's to the Caregivers!
This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!
Here’s to the caregivers for people with epilepsy!Here’s to those who live with us, take us to the hospital, and love us any which way they can.And here’s to that selfless love.It gets us through all that life has thrown at us.
But what of those with epilepsy whose families don’t seem to be so loving?We can be shunted to the side, never truly to join the family table. How could these mothers, fathers, sisters, brothers, and grandparents be so heartless, seemingly embarrassed by the existence of “an epileptic?”
I’m graced with a loving family, but, in my support group, I’ve gotten to know wonderful people with epilepsy who have been emotionally shunted aside.One person – we’ll call her Emily – literally had to sit off to the side.She didn’t go to the family celebrations at cousins’ houses during the holidays, and her own family never hosted the events themselves, fearing the rest of their family would see a seizure.Everywhere she looked was shame.It’s inconceivable, but, then again, so is cruelty of any sort within a family.How is this possible?
nally crippled by their families.
The “self” blurs outwards.Depending on the individual, it either ends within the confines of one’s skin, brain, and actions or extends further.For some, the person’s surroundings – environment, money, and/or people -- become a part of the self.Feelings of pride or embarrassment blow back on individuals in the family.And, for these people, the shame, seemingly caused by the innocent person with epilepsy, can’t be negotiated.
Now, granted, we’re imperfect beings.This extension of the self is challenging to control, even for those who recognize the interplay.Regardless of these root emotions, though, our duty to care for our family is written into the definition of what it is to be human.And it’s through this caring, this safeguarding, this loving of our family that we truly add to the core of the self.
There are amazing caregivers whom most of us have met, many leaving us speechless.As angry as we all can get about those who turn their backs on people with epilepsy in their care, I’ve decided to spend my time thinking about the extraordinary caregivers.
So, here’s to the father who drives his teen-age daughter everywhere so that she can participate in all of life, especially those I’ve encountered who support the Epilepsy Foundation New England.
Here’s to the mother who makes ketogenic meals for her daughter, having the rest of her family adhere to it, too, so as not to make the child feel odd.
And here’s to the sister and her husband whose brother with epilepsy lives with them, making him simply a part of their natural lives. I’m so grateful for all these wonderful caregivers and would
love to hear your stories about those you know.If you have them, I hope you’ll tell them in the comments. These are the tales that need to be told.
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…