Long before I’d ever heard the term Asperger’s, I learned to accept my bright, shy uncle for who he was. He was funny and soft-spoken, and even though he was nervous in social interactions, he always came to our family gatherings, where he’d take up residence in the perimeter of the room.
By Thomas J. McGranahan Jr
Above the yard to paint this home, my first time on a hydraulic lift.
Why were we on the ground?
Need to go up, to finish the work.
My friend told me he’d had to grab hold of me, for I was getting ready to collapse over the side, no basket around this lift. He was able to sit me down and lower the platform while I was having a seizure. Once again, I had a complex-partial seizure without an aura to warn me before I lapsed into unconsciousness. Seizures don’t make appointments.
Most all of my seizures had ramifications for at least one if not all of the different aspects of my life: self-esteem, social interactions, health, employment… It is, at the least, debilitating to have a seizure. And none are as breathtaking and humbling as those “off guard” close calls with death. I’ve had quite a few close calls due to my seizures, simply because the location, the time and the type of seizure is never predictable. I didn’t have the serious or the “mild” seizures happen to me in any specific order. They occurred, as always, in sporadic ways. But I didn’t let that aspect worry or scare me, even after years of hearing others telling me how much more careful I should be, or ‘you could have a seizure’. Yes, I recognized the reality of my Epilepsy and no I didn’t take any “out on the limb” risks, at least not knowingly.
Another time a friend told me that, as we were coming out of a commercial building, I suddenly collapsed. If he and another friend hadn’t caught me I would’ve fallen, face first, down the brick stairway. I had had a complex partial, and this all happened in seconds.
How likely can someone achieve their goals with an iron ball chained to their feet? Well, having Epilepsy is like wearing a ball & chain 24-7. Epilepsy survivors have to physically, financially, socially and emotionally recover from seizures, then still manage everyday stress. Those of us living with Epilepsy must stay flexible and unremittingly strong – although that is far from easy. Society urgently needs to grasp that there are a lot more factors involved with epilepsy than the seizures. The public needs to respect our ever tested besieged spirits – not degrade and waste them. After our communities do get a better understanding – will better deal with it – lowering its cost; medical, economic and social.
Those of us dealing with Epilepsy could help others in our communities adapt by talking about it – to at least 1 or 2 others per week, per month, or per year. Start off a conversation saying you know of someone with Epilepsy (just don’t mention that ‘someone’ is you) and ask (with the tone of ‘Help’): “Do you know of anyone with it or if they’ve seen anyone have a seizure?” 4-5 out of 10 will likely say yes, 4-5 out of 10 will say no and 1 will say they know of someone who has Epilepsy.
The one thing every individual has total control over (except when moms and dads had decided for us) is the time we close our eyes and go to sleep. So everyone more or less takes for granted the control of their consciousness.
However, the disabling disorder of Epilepsy; tonic-clonic, complex partial, petit mal & absence seizures, abruptly takes away one’s control of that highly valued personal treasure. So, of course, witnessing someone having a seizure and losing control of their consciousness terrifies and shocks everyone. Which helps explain why the public can’t/won’t deal with it.
But nowadays, everyone can learn a little more by visiting places like: https://www.caring.com/articles/best-epilepsy-websites or http://www.epilepsy.com/information/professionals/resource-library/links/epilepsy-websites … or on Facebook: https://www.facebook.com/groups/seaaware/, https://www.facebook.com/groups/578871925456869/ …
Everyone who has Epilepsy directly or indirectly (family member or friend) do please choose to see the positive aspects of each New Day ahead. Do not let the mayhem of seizures have the final say on your perspectives. There is so much more to this world than Epilepsy. Yes, it can be quite degrading to our financial, personal, economical… aspects of life but don’t ever let it degrade your spirits – simply don’t let it! Instead choose to see the positive. By doing so we are “bringing” strengths into our family, friends and all others handling the disorders of Epilepsy instead of “pulling” on them.
Let’s all start off our upcoming days Staying Strong!!
To learn more about Tom’s story, visit his website: www.epilepsyintheopen.com
One can also view Tom and his wife on a ‘Virginia Currents’ TV show (debut -2013, rerun -2015): www.pbs.org/video/2365130524
And check out this video of Tom speaking: https://youtu.be/g0nLdv4ObO8