I recently read A Mind Unraveled by Kurt Eichenwald and cried my face off through a lot of it. The struggles he faced through his battle with epilepsy are completely unreal and so much more than I have dealt with, and it helped me realize that even though I can't work and I can't drive and I sit here in a pool of self pity throughout the day, I need to kick myself in the ass and do something. I haven't figured out what that something is yet, but I'll figure it out eventually.
***That was written... and I got interrupted... And a few weeks later, I am continuing***
And just as I got motivated and ready to do something... my seizures came back and that was just kind of a kick in the face. And that's fine. I can work through it. The problem is, we are moving soon. LIKE SOON. Like the 19th- SOON.
Randy and I bought a house. In Indiana. And so we have been packing and trying to get ready for that. And in the midst of all of this, I had follow up appointments with my neurologist and my neurosurgeon. We discussed the seizures I have been having, the frequency, the auras, everything. And I am now a candidate for a new medical device that is similar to a pacemaker.. but it's for the brain. And it is implanted in the skull with leads placed in the brain at the spots that are still firing off seizures. That's the simplest way to explain it- it's actually an amazing device and there's a lot more to it, but that's the quickest way to tell you about it.
They gave me a booklet about it and they gave me some contact information for people who have been living with the device. I was very excited to be able to talk to people and hear what they have to say. I reached out pretty immediately. I was on the phone with someone for over an hour while he told me his story...
This man had to have an on demand pace maker because his heart stopped whenever he had a seizure. They were going in to take out his right temporal lobe and then he was told they couldn't do it because they were also getting signals from his left side. That's when he was told about this device and this is when they were just starting and it was in the trial/research and development kind of phase. And he told me, at this point, he was sort of "I don't know how many more seizures my heart can handle. How many more do I have left? If nothing else, this research will help someone else. Let's do it." So he did it. He had the device put in. Eleven years ago. And he has been seizure free for six and a half years. He went to college. He has his masters. He went from four medications, down to one. Remember, I said he was part of the trial group, so he is on his third (and the current) version of the device, he said they know exactly how to make it work now and it obviously works now because he is seizure free and he is telling me all of this, and I'm trying to stay composed.
It was SO SO SO nice to talk to someone who gets it. He was talking about how amazing it was to go back to school and he was able to read his text books and he could read the pages just one time and he knew what he read, he didn't have to read them again and again and still think "Wait, what did that say?".
I had been on the fence about the device. But he helped me see that it is pretty amazing. And I would LOVE to wake up and not worry about going into a seizure. And I would love to read a book and read a page just once. I would love to go back to school, that was the plan before my brain decided to throw this party.
I wasn't going to let epilepsy win when I first started this blog... But honestly guys, it has been kicking my ass. Three brain surgeries (only two of them successful) and I'm still having seizures, it's pretty discouraging. I've spent A LOT of time in the hospital with the tests and the surgeries and the recoveries and it's exhausting and I am over it. I cry a lot and I'm angry. I think I cry because I'm angry.
When I went to see my doctors last week I didn't think they were going to offer me anything other than a medication adjustment. I definitely didn't expect this "Let's put a computer in your head and make you a cyborg" option. But I'm interested and it looks awesome. I spoke with my doctor and she said there are amazing doctors in Indiana that she can connect me with that can do this surgery and she will help me set it up and she can still overlook the data and it will be fine. That made me happy and helped re-assure me. When I spoke with my neurosurgeon, he was like "No I've been working on you and know your history, lets do it before you move". And I thought maybe we can finagle some of the dates... but it was pushing it. We went ahead with the pre-op blood tests and everything anyway just in case. This was on June 6th.
Yesterday, I received a phone call from the hospital letting me know that my procedure was pre-approved. ????? Cool. WHAT? I hadn't scheduled anything, and usually your procedure needs to be scheduled before it is approved. Before I could ask any questions, the lady wished me a nice day and was gone. Dumbfounded, I walked down the hall and verified things with Randy.
"Hey Babe?"
Randy turned and looked at me. "What's wrong?"
"Nothing. Did we schedule my testing and surgery?"
He looked at me and was just as confused as I was, which was a good sign, it means I didn't schedule something and then my crazy Epilepsy Brain erased it. And then I explained what just happened. We decided I should call the surgery scheduler. She was not at her desk. I left her a message explaining that my procedure was approved but I was moving and I didn't know it was scheduled and please help.
She called me back kind of laughing because I had the drop on her. She said she pencilled me in because she was going to call me but wanted to talk to me and apparently everyone in her office moved ahead of her while she was out of the office for a few days and got it approved and everything.
But if I am interested in the surgery...
I can have it done on
FRIDAY.
FRIDAY?!
She said she understands that's a little soon and overwhelming... "Um... listen lady, you want to put a computer in my head and you are thinking it's a little soon and overwhelming? It's Monday." (of course I didn't actually say that)
She had to have a meeting to verify everything with the Epilepsy staff and I said that was good because I had to have a meeting with my people too. So after trying to figure out logistics of switching up move dates by a week (and then finding out it could maybe be two weeks or more) we decided it was best to wait until I am established with a team in Indiana and have it done out there. BUT HOLY COW! What an emotional roller coaster that was! For at least two hours, if not more, I was just sitting there yesterday going "FRIDAY?!" It was quite the shake up.
I am glad the doctors presented me with another option. I am SO grateful for Kurt Eichenwald's book. And I loved hearing that man's story on the phone the other day and that he took the time to talk to me. I can't wait to hear from other patients and just talk to other people dealing with epilepsy.
My friend said today I can't give epilepsy another win, and she's absolutely right, because that's one step closer to defeat and giving up. I need to stay strong. I need to accept that it's OK to cry and be angry and not beat myself up for it. As I once said to my kindred spirit, Ezekiel, when he smiled at me SO SWEETLY "We're gonna beat it, and we're gonna win". I just need to remind myself of that.
