Yesterday I attended the Epilepsy and Wellness Conference put together by the Epilepsy Foundation of Michigan. It was the first time I was in a room with other people with Epilepsy where I walked into a room to advocate for myself. (I am a social worker who has spent her life working with persons with disabilities so while I have advocated for others including those with epilepsy I have never do so for myself especially though I have had epilepsy for likely my whole life I have only recently been diagnosed) I felt selfish though I knew I would help others but at the same time I felt ALIVE and for the first time in so long I could FEEL again.
My entire life, the puzzle pieces started snapping into place. Does this mean that life is suddenly going to get easier?Hardly. This however, strengthens my resolve to take all those skills I used to advocate for others and this time I am going to fight not only for me but for all of us with Epilepsy. So you may be hearing from me as I start building my 'bridge' and I hope we can all work together to change the future.
One day soon, I will tell you my story and I hope you will understand my drive, that I do this not just for me but for all of us.
As I read articles about how important it is to stop seizures in children in order to prevent cognitive issues later, I think about the estimated thirty years of untreated seizures I have endured and think maybe this is contributing to my slowly degrading though process. It wasn't that I didn't have EKG's done or that my mother didn't take me to doctors and state something is wrong please look deeper and seek out what is going on! One of the few biological histories noted is that my biological mother had epilepsy. No one found anything, or rather anything SIGNIFICANT.
This is the game my insurance company pays for me to play, pretty easy yes? NO. At least not at first, see the more upset and anxious I get about not understanding it the more my brain goes as my son calls it 'offline' and then I can't solve the puzzle. However, by the end of the allowed (and my insurance only gave me 12 sessions so had better gotten my game on) time limit I was able to solve a puzzle with 5 rows across/down.
My point? Sometimes with great patience and a lot of choking on ones pride (sitting with a girl younger than you who knows the answer while you struggle tests ones limits) you can reteach your brain. Course I still have to practice. Some days I do better than others of course and when I get upset I fail.
I took a neuropsych evaluation and the test result showed that I was so poorly functioning at math the licensed DR wrote on the evaluation that I wasn't 'trying' ANYONE who has ever spent more than an HOUR with me knows I give everything my all. The test took 8 hours. The DR who wrote up the eval met with me for 20 minutes. I was unable to do basic math or recall numbers/words given to me after a period of time. It was embarrassing yes, but never did I not try to answer the questions. I had already played the game above which is how I did well on the puzzle games that i was tested on. When I contacted the DR after reading her write up she told me that I should go talk to someone about my anxiety issues because it was obvious that my epilepsy and my medication for it was not affecting my cognitive abilities at all. I informed her that no DR especially a recent grad cannot make that assessment in 20mins. My other point that I didn't make cause I felt she would latch onto it as her justification is the meds I take may cause anxiety but that doesn't mean I can't still put forth my best efforts. That is how I do things, did you not see that game I played (photo above) in the room with the younger girl, I learned two things: how to bear down on my pride to succeed and to overcome my anxiety in order to obtain the answer if possible.
Which brings me to my other point those doctors, who couldn't look past the surface they still practice today. In the end it is about the time you invest in something is what you are going to get out of it. Only a very select few people in the world are handed a silver spoon in life the rest of us get to work so buckle up for the ride it's usually bumpy but if we can embrace it all then we can survive, thrive and in our darkest hour find our light.
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