About last night…
Dear Generation Listen friends,
I’m sorry about yesterday. While I am always transparent about it, I hate situations where I have to say, “It’s nice to meet you. My name is Megan. I have epilepsy.”
If you’ve poked around my blog then you have seen references to it or some brief explanations. I have a genetic digestive disorder; I do not absorb the nutrients from food. Therefore, I don’t have any glucose in my spinal fluid and it puts tensions on my vagus nerve, which causes a petit-mal style seizure where I do not have convulsions. I seem to space out, make weird facial movements, rub my fingers together, and tighten my muscles.
However, mine are entertaining. I talk and I walk. I appear to be conscious, just extremely intoxicated. I also try very hard to convince you that I am not having a seizure, I am just fine, and I am the most brilliant person that you have ever met.
If you find yourself in this situation, keep talking to me. Ask me really ridiculous questions and continue the conversation just for fun. An example off the top of my head: Tell me that you read an article that the French government has bred green chickens whose eggs cure cancer, and I will probably tell you that I read it and I heard the Germans were applying the same method to dairy cows. Tell me that you don’t remember how they did it and ask me if I do, and I might go into a long explanation about the chemical makeup of Pez.
One of the most famous tales is calling my father while unconscious to convince him that the Pope had just been excommunicated and I was there to witness it because it happened in my living room, in Webster Groves. He had stopped by to say hi and saw it on TV.
Since I walk, I can walk into things and fall. As you help me up, tell me something ridiculous like I tripped over the penguins. The last time someone did this, my response was “Those damn penguins. I told her to get rid of those. Those should be illegal.”
The seizures don’t hurt me. It’s literally my brain rebooting like a computer. They last about 1-2 minutes. Sometimes I have a brief warning before it hits, but over the last few years I have developed a “seizure state” where I can tell that I am having latent seizure activity that isn’t breaking into full unconsciousness. During a “seizure state,” I limit my activities and I do not go out in public. Monday was a “seizure state” but I was fine all day yesterday.
After Monday, I should have declined the meet-up but I was so excited to attend my first Generation Listen meeting. I was so happy that I felt great and I had been on the computer all day. I had a couple phone calls and I was fine. But I wanted to be clean when I met you all for the first time, so I showered even though I shouldn’t do that for 48 hours after a seizure or seizure state. The seizure was in the shower. I was fine; I didn’t fall. I sat down on the faucet. I don’t recommend sitting on the faucet, especially if it’s the type with the little lever to redirect the water. My butt really hurts today.
I could not see but I could walk. Mom lives with me, so I called for her. She helped me put my robe on and get in bed. About 15 minutes later, I could see well enough to text but I couldn’t find Katie’s number in my contacts. However, I could find the Slack app. Knowing that my message would reach her there, I put it in Slack. I didn’t want you to think that I just skipped my first meeting.
My biggest concern is that someone will worry about me. Trust me; I’m fine. It’s about as serious as acne. Celebrate that I went 69 days without a seizure, which is a new record. The previous record was 65. They are getting further and further apart, and I can predict the timeframe that I call “seizure week.” Last week was “seizure week.”
The other entertaining piece that is unfortunate for those who have to watch it, but I have to eat MASSIVE quantities of fat to make up for my inability to digest glucose. My medical team at Mayo Clinic literally told me, “A bucket of Kentucky Fried Chicken is healthier for you than a salad.” I couldn’t eat any fruits or vegetables for about 10 years, but I can eat fruits and some vegetables now. If a food is considered to be “unhealthy” then I should eat it. I have spent $50 at McDonald’s before. Never pay for my meal. If I dated, this would be a reason why I’m still single.
So last night, I came back into consciousness. Ordered $80 worth of Chinese food, ate it all, and went to bed. I’m fine.
Beer is actually good for me because it helps me digest. That’s direction from Mayo Clinic too. Just low alcohol. If we’re drinking Busch Light, I can drink you under the table. I also attribute that skill to Catholic school.
I am an open book. Message me on Slack, LinkedIn, email me, text me. I am not exaggerating or just making light of a situation, it really is this stupid.
Love,
Megan
xoxo
