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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It was time for me to shed the light on my epilepsy...
In 1976, I experienced my first seizure.I was in my high school hallway between
classes (read: teens all around),
having felt all morning as though I was disconnected, somehow reading
everyone’s minds.What an aura.
The next thing I knew I was in the Concord, NH, hospital,
while they tried to determine if I was “an epileptic.”And so began my feeling of being the other,
of being weird, and of humiliation. My cognitive abilities just weren’t what they used to be.Was it the epilepsy or the Phenobarbital?Regardless, it was me, and I was less of a
person to my way of thinking.
Fairly soon, I moved onto more effective meds, which allowed
me control.My self-esteem stayed
damaged, though, and, like so many, I hid my condition. I only dealt with it when I would forget to
take pills and have a full-out grand mall seizure – usually with people who
didn’t expect it because, that’s right, I hadn’t told them about my epilepsy.
What a waste.Not
only was I in a dangerous part of the shadows, I wasn’t handling the root of my
problem, the stigma.Furthermore I was
missing out on an opportunity to help many others’ find their way out of their uneasiness
about epilepsy by giving them the information they need to view it realistically.
As time went on, I had seizures every few years, but only
when I forgot to take my meds.Because I
was covering up my epilepsy, I hadn’t told people around me at work or even
good friends that I have epilepsy.It
was a shock to all when I had seizures.And I owe apologies for having put the people who spent so much time with me through my tonic-clonic episodes without alerting them and coaching on how to respond.
Growing weary of my self-diminishing secrecy, I decided it
was time for a change, but only after 36 years had passed. What a waste it had been. I looked for opportunities to tell others with
whom I had established relationships that I have epilepsy, how common a
condition it is, and how to help someone having a
seizure. I found openings when asked
what my medical bracelet was for and waited for other appropriate moments to
begin spreading the word.
It got easier and easier, and a common belief began to bear
out:The stigma against epilepsy
partially lies in others’ fears.I could
see many of their bodies clenching when I initially told them.However,as I spoke to them and they learned facts —especially about what to do
if a tonic-clonic seizure strikes – they began to ease.Granted, these may be especially open-minded
people, but it did bolster my courage to continue on.And I’ve found that almost all those I’ve
told haven’t let me down.
I'm blessed with being able to control my tonic-clonic seizures via medication. Nonetheless, I hid my seizure condition for 36 years. Finally tired of the stigma against epilepsy, I said "no" to staying in hiding, choosing apt moments (ideally somewhat casual ones) to tell people with whom I have an established relationship, of my epilepsy.
The stigma against epilepsy is culturally based, as well as a product of ignorance. It's up to us, through our open discussions and abilities to teach others about this not-so-rare condition, to start to change the unfounded perceptions about epilepsy, do away with the stigma.
For the good of you, for the good of all, we need to speak the truth.
If you want to get in touch to talk about the ideas on this blog, please don’t hold back. You can reach me at @LightEpilepsy or email@example.com. I look forward to hearing from you!
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…
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 …