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!
It’s hard to take advice from a doctor younger than me. I still feel young. My new doctor was in grade school when I started my education on epilepsy, twenty years ago. I am not a doctor, but I am a specialist. I have the inside track, I live this seizure life. I know the many treatments. I have been on many medications and have read many texts on epilepsy.
Nobody knows why I have seizures. After nearly 20 years, and well over 20 tests, they have no clue. Doctors offer to run more tests to see if I am a good candidate for surgery. I do not want surgery. I’m not willing for you to idle around inside my brain. I don’t accept that risk. I will live this life with its ups and downs. My brain will remain untouched. I don’t want to lose the ability to write or speak or walk and still have seizures anyway. Surgery is no guarantee.
I speak to brain surgery survivors. Many are still having seizures and are still on seizure meds. I do not accept that risk. It’s not enough for me. I am unwilling to have someone poke and prod around in my skull. I’m sorry, that’s not for me. I’ve mentioned it many times, to many people. My doctors still offer me every six months, “We could put you in the monitoring unit and do a surgery consult.” Doctors don’t know why I have seizures or where they originate from. How can you treat that with surgery? I do not want someone to take a melon-baller to my head and scoop out a piece of my brain.
I have had many surgeries to remove many things: ovary, uterus, gall bladder, two c-sections. But I will not let you investigate my brain, hoping that you will find the right spot where my seizures allegedly originate from. The risks are not worth it to me.
How many times must I say no? What will happen when I can’t say no? There’s nothing scarier than hearing people talk about you and ask you questions and you can’t respond. I want to respond. I’m a good girl, a former straight-A student, the geek who sat in the front row and asked questions. I will answer anyone anything. Unless I am having a seizure… Consciousness is a slippery fish. I can’t hold it in my hands for long without it flipping out and smacking me in my face.
Once I woke up in the MRI tube, it was so loud and the gravity was making me feel like I was moving underwater. The knocking pounded into my head like nails. Even writing about it now hurts my head. Sounds can HURT. That time they only gave me Ativan and ran a few tests. Nothing terrible happened. They didn’t let my husband take me home until I could tell them why he wanted to take me home. Which was because I wanted to go home. Finally five hours later I could talk and remember my middle name and correct age. It was five long hours when all I wanted was to be home in bed. But I couldn’t tell anyone. They didn’t listen to my husband.
When I could talk and begged to be sent home, I was given a one-page printout from Web MD about seizures. They told to get some rest. They didn’t not give me any new information. 20 years of tests have remained inconclusive. Seizures are unpredictable and NO! I don’t want surgery. Why won’t they stop asking? I worry what may happen when I can’t say no.
NEXT UP: Be sure to check out the next post tomorrow by Danielle Watkins at Bus Fair for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET