A few weeks ago, I had my first appointment with a highly renowned epileptologist. The man is brilliant: he’s the director of the New York University Langone Comprehensive Epilepsy Center, has written two books, and been featured on Dateline for his expertise. For the first time in my life, I was actually looking forward to a doctor’s appointment. I was hoping that this would be it. He would have answers, and it would finally all be over. If he didn’t have a solution, who would?
I sat down in the room with him and explained the entire timeline: what happened when I had my first seizure, then my second, the other symptoms I’ve experienced, what the other doctors have said, and lastly, how I’m feeling on my current medication.
His consensus was that he wanted to find out exactly which type of epilepsy I have (which hasn’t been determined by any of my doctors yet) and then change my medication according to that. Which was music to my ears. I have been feeling uneasy about my medication for a long time, especially with my fluctuating dosages. It was finally time to fix everything. To feel better. For my world to go back to normal.
But, he wasn’t done. He explained that the protocol for doing that would be another EEG. Cool, I thought to myself. I can do that. I’ve done a million of those.
For those of you who don’t know what an EEG test is (I sure didn’t before I was diagnosed), it’s a test where the technicians use special glue to stick wires to your scalp and measure your brain waves. I’ve only done two types before. One was a routine EEG, which lasts 20 minutes and they very briefly try to induce seizure activity with different techniques like flashing lights. The second was a 48 hour outpatient test. I went to the hospital, they connected it to my head, I took it home and went about my life as usual for the next two days. It was a little uncomfortable and not the trendiest look, but then it was over. Not bad.
Except this time wouldn’t be like those.
My doctor explained the plan of action to me: I would be admitted into the hospital for at least three days. My anti-seizure medication would be lowered and I would be forced to stay awake throughout the night. I froze. Every since I was diagnosed, doctors have been stressing the importance of getting enough sleep. I had trained myself to calculate how much sleep I would get each night and prioritize that over everything else.
He told me the goal of the test was to induce seizure activity, and I would have to stay in the hospital until the test showed results. My mouth was saying “Okay, no problem!” but my brain was already in a full blown panic.
I went home and immediately began researching the process. I am a member of multiple epilepsy support groups on Facebook, and I knew that was the best route to finding people who actually went through it. Hundreds of people shared their experiences with these kinds of tests. Some people stayed in the hospital for three days, others a week, and one woman actually had to stay for an entire month. As if that wasn’t unnerving enough, I realized that this type of testing often led to the patient suffering a grand mal seizure. In so many accounts, people expressed the distress they felt about having to go through so much just to get test results. I would have to wear a bracelet that said “Fall risk” and be forced to stay in bed unless it was absolutely necessary to get up.
I know I preach on here about how strong I’ve become and how great everything is these days. But, right now, I can honestly say I have never been so afraid in my life.
It’s one thing to suffer a seizure completely out of the blue. It’s disorienting, shocking and exhausting, but then when you wake up, it’s over. There’s no nervous anticipation. It just happens.
It’s another thing to have someone purposely trigger you to have a seizure. For the past eight months, I have considered having another grand mal seizure one of my biggest fears. After educating myself and realizing that seizures can cause brain damage or instant death, I’d do anything in my power to prevent them. And now they’re going to try to induce one? Is this a sick joke?
I’m not quite sure how I’m going to be able to go in there and let the nurses do things that I know aren’t healthy for me. But, obviously, I don’t have a choice. I don’t get to decide what’s best for me, the doctors do. I just have to have faith that this will work out, despite the knots in my stomach. These test results will lead to a solution. They have to.
I have been having severe anxiety about being admitted to the hospital today. All the working on myself and getting stronger has been working well up until the past week or so. I guess this is one of the things that is going to crack my armor. And that’s okay.
Honestly, I don’t really have anything inspirational to share with you this week. Just that no one is bulletproof. We can’t smile through every single thing we have to face in life. Sometimes, our strength shows just from pushing through our greatest fears.
I’m probably going to be more afraid than I’ve ever been in my life during my stay in that hospital room, and that’s okay. Fear is allowed. But, if you think about it, what does fear really do? It’s not going to take away my disease or keep me from going to the hospital. It’s not going to prevent me from having a seizure. And it’s certainly not going to make me feel any better.
This is just another part of my journey that one day I’ll reflect on and know that I’m better for it. Hopefully, on that day, I’ll be stable and taking a medication that works for me, and I’ll be thankful that I took the necessary steps to get there. Until then, you can find me doing my absolute best to push through.