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,
This post is part of the Epilepsy Blog Relay™ which will run from June
1 through June 30. Follow along and add comments to posts that inspire you!
A dear friend of mine whose daughter’s epilepsy first struck
when she was 14 left me speechless. She told me that I, unknowingly, had saved
her from hopelessness, simply by existing.I had meaning.She saw that I had
a good life despite my condition and could envision a future for her daughter
filled with happiness and achievement.(Flash forward: In college now, her
child just got all As and is a varsity athlete.) Her daughter’s life has been affected, no
doubt, but her epilepsy never stopped her.
She’s one of the lucky ones, though.Her epilepsy is controlled and she lives with
relatively few barriers.With no choice
but to stay at home, though, many with uncontrolled epilepsy can't work in traditional jobs and struggle to find
meaning in their lives. But what is
Starting at the beginning, here's the definition according to T…
I had a tumultuous life throughout my time spent at George Mason University and after graduation in the spring of 1998. Since the early 90’s, my life became further complicated by epilepsy due to a traumatic brain injury (also called a TBI) I had at the age of 10 in 1983. Those of you who know anything about epilepsy, know that it makes life more than challenging. Not only does one have to deal with the side effects of each medicine, but there are also side effects of the epilepsy itself, and in my case, the traumatic brain injury, as well. I had to deal with depression coming from three different angles. I thought all these side effects were going to be with me for life. What a joy! Further compounding the epilepsy were the side effects of the anti seizure drug (AED) I was on. To name a few, they were, depression, weight gain, tremor, stuttering, and being in a constant haze. There are too many more to mention, so let’s stick with those five. All this changed about the time I turned …