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.
This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!
We all get by with our friends’ support.Or is it our family?Or are they one? I’ve walked through life, my needs have changed.As a child, I needed the care, feeding, and
guidance of my parents.As an adolescent,
my friends were everything to me, my mother became even closer, my father more
distant.Then, when epilepsy slammesd my
life at age 18, my parents, once again, became the drivers for my care.But this is just my story. In his book, A Mind
Unraveled, heralded writer Kurt Eichenwald tells of the “family” he found
in his roommates at Swarthmore College.They looked after him during seizures and were his advocates in the world
outside their dorm room.These were acts
born of desire to protect one’s own, and Eichenwald, even artificially thrown
together with them as a roommate, had become a part of their family.It was exhausting, though, and the caregivers
could only take so much. His st…
My life has been filled with much turmoil, been full of angst and unfortunate luck. There have been four specific incidences that add up to make me the man I am today. The many hardships I have endured throughout my lifetime, each misfortune, each one has not now, nor will they, ever have me on my knees ready to crumble. I am simply too dumb to fail and never know when to say enough is enough From a traumatic brain injury at age ten; the onset of seizures at age twenty; the three disc herniations in my lower back at age thirty-two; and most recently, a cancer diagnosis at age forty-four, would be enough toto make some people quit, throw in the towel, but not me. I just consider it as another challenge, the next step in the game we call life. In my life, I have known nothing else. Without going into too many details, each of these four injuries will never be healed for as long as I live. I have not now, nor will I ever, have a chance to rid myself totally of them. The brain injury…