Welcome to November, 2018! It’s been a long year and a lot of things have changed since last November, but one thing hasn’t and will never change:
“My name is Shawn and I have epilepsy.”
Gratitudes 2018, Day 22
Sorry, no pictures this time, but I’ve got another theme that I can use to put together my list of gratitudes today.
- Epilepsy Foundation of Minnesota. When I was job hunting last spring, I felt inspired to look into volunteering for some kind of epilepsy-based organization. Maybe I’d get a job out of it, maybe I wouldn’t, but trust me on the sunscreen. Wait… that’s not right… Maybe yes, maybe no, but I wanted to try and volunteer. After all, it’s something that’s been close to my heart for a long time. And my head. Definitely close to my head.
- Tammy Sammon. When I looked at their website, I could choose up to three groups to potentially volunteer for, one of which was the creative arts program. Tammy is the coordinator for that group and… well, it took a while to connect. After waiting a while to hear back, I finally got a response. However, she was preparing for Camp Oz, a week-long camp for kids with epilepsy. Next, she was at Camp Oz. After that, she needed to recover from Camp Oz. So it might have been a couple months overall before I was finally able to start volunteering with EFMN.
- Camp Oz. I took two days off from work this summer to volunteer at the camp. I tagged along with a group of 11- and 12-year-olds as they went through their daily activities and even got to participate a few times. I helped gather wood for a fire so they could do some cooking, I offered suggestions as they prepared a skit for the campfire on Thursday night and I even got to do a little archery. I managed to hit the second yellow ring on the target with my second arrow (there are three yellow rings, the smallest of which is the bullseye). So I set a really high standard for myself that I was never able to match. Just ask the arrows that ended up in the ground in front of the target.
- Archery. We had a really small compound bow at home when I was a kid, which is why I knew I should prompt the camp counselor about having the odd-colored feather pointing to the outside instead of the inside (having it rub against the bow when you shoot would send the arrow… I’m not sure what direction it would go, but definitely not straight).
- The EFMN Adult Support Group. It meets once a month and the meeting was tonight. I usually go to provide support as opposed to needing it—I came to terms with having epilepsy many years ago, but being able to tell people about my experiences and making them feel more comfortable is a good feeling for me, too.
- Anti-seizure medications. I want to express a great deal of gratitude for the meds that kept me seizure-free for about 15 years. Sure, it’s unfortunate that I have to refer to them in the past tense, but even with the stuff I’m taking now, the fact that I can function well instead of being stuck having blackouts or major convulsions… I’m definitely grateful that they exist and that I’ve had access to effective ones.
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Seizures and bonus features
I was seizure-free for about 15 years. Now I’m definitely not anymore.
What’s strange is that even though I’m having them more frequently than in the past, they’ve been small ones. Simple partial seizures. I’ll see some random image in my head or be unable to put words together in a sentence because they get all scrambled up in my brain. Sometimes I just feel a surge that’s kinda like blood rushing into your ears. All very hard to explain, but all very minor compared to blackouts or full-blown grand mal seizures. In that sense, I’m extremely lucky.
After so many years, I finally needed to change my medication back in October, so the doctor and I decided to increase the dosage of one and leave the other. That hasn’t solved the problem: I had two more seizures over the weekend. Only the second one was noticeable because I was having a conversation and then all of the words kinda swirled away. Well, not all of the words—I was still able to sit there swearing under my breath.
So now it’s time for another change, but instead of only adjusting what I’m already taking, the doctor is prescribing Vimpat. I’d never heard of it before my last appointment, but… well, if the doc thinks it’ll work, I’m hoping he’s right. The part that’s a little bit concerning is that before starting this medication, I needed to get an EKG. (Regardless of what you may have heard from women in any of my prior relationships, I do in fact have a heart.)
I had the EKG done this morning and the doctor signed off on it, but the results showed an abnormality. No one elaborated, just said that I needed to make an appointment to come in later this week. Which thankfully means I’m probably not gonna drop dead from heart failure in the next few days.
More seizures and now possibly heart problems. But instead of panicking (which seems like a reasonable option at this point), I still feel very lucky. Things could be much worse. For one thing, I could drop dead from heart failure NOW! … Or maybe NOW! … How about NOW! Nope, still alive and still feeling very lucky.
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Day 30: Giving thanks
Well, I started the month like a lion and I’m ending the month like a much smaller lion.
roar.
We’re not far past Thanksgiving, so for this last day of Epilepsy Awareness Month, I thought I’d focus on giving thanks. Focusing on the bad parts of having epilepsy pulls my attention away from all of the blessings I have in my life and there are a bunch. I’m thankful for…
… My friends and family. I have an amazing support system that is willing to help me out as much as they can. If I have to leave a gathering early because I don’t have my medications, they understand. If I lose my driver’s license due to seizures, there are people who can drive me where I need to be.
… My driver’s license. There are plenty of “one in 26” people who have uncontrolled seizures. If you have an involuntary loss of consciousness, your license gets suspended for a couple months (and the time restarts after each seizure, so you may not be able to drive for a loooooong time). The length of the suspension was six months when it was happening to me, which sucks when you’re in your mid-20’s.
… Epilepsy treatments (medication, surgery, etc). They don’t always work, but if they didn’t exist at all, I’d be one of many with uncontrolled seizures (both in frequency and severity).
… My blog. Sometimes it feels like I’m shouting into the void when writing in here, but if one person reads one post and feels better afterward, it’s been worth it.
… Electricity. My computer would look exceptionally weird sitting on my lap and not doing anything.
… Sunsets. A few days ago, the sun reached a certain point on the horizon and there were fluffy clouds in the sky, so it was lit up in pink and purple and all sorts of colors. At that point, nothing else mattered on this list. I wasn’t using electricity for my laptop, I wasn’t worried about epilepsy and seizures, I was just watching something beautiful.
Yes, I have epilepsy. Yes, it affects me in ways both good and bad. It has not stopped my life. It has not stopped beauty. It has not stopped my ability to be thankful for everything around me.
So thanks to you, fair reader(s). I hope you’ve had a good Epilepsy Awareness Month, but whether you’ve learned anything or not, I hope you remember to be thankful.
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Day 21: Epilepsy and the Arts
I could have written this on Sunday afternoon, but I’ve kept myself busy enough to forget for a couple days.
November 19th was the Creative Arts Showcase hosted by the Epilepsy Foundation of Minnesota. Much like the onein26.org ad campaign, they asked me to take part and I said, “Okie dokie!” Maybe not in those words, but I agreed to participate nonetheless.
They had displays of paintings, photographs, someone had made a lot of quilts and shoulderbags… all very creative and all created by people with epilepsy. The same went for almost everyone who made some sort of presentation or performance during the showcase (the only exception was a poem written by the significant other of someone with epilepsy).
I first asked if they had a projector so I could show a few minutes of Arsenic and Old Lace. Alas, the venue was too small and they couldn’t have put a screen anywhere. “Curses! Foiled again!” … I guess this was really the first time I was foiled—my backup plan worked fine: I read Pre-Creation Creation for everyone. I made a few adjustments (things like changing the TV show from ER to NCIS and getting rid of the Budweiser frogs) and it worked out pretty well.
Aside from what I did, though, there were people who sang and gave short speeches (I think the youngest singer was 8 and backed up by her father on guitar), the final performer played a few songs on the piano… it was really kinda cool. The point of the showcase was to demonstrate that people with epilepsy are capable of developing and performing different kids of creative arts and that’s exactly what it did. I was glad I could be a part of it and I’m hoping I can do it again next year.
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Day 17: “Do I know you?”
I’m hoping this blog entry is the result of a bad type of medication vs. having epilepsy overall (the first would mean it’s a lot less common). It’s likely something my doctor prescribed back in the early 2000’s when I was “medication hopping”, trying (and failing) to find a combination that would prevent my seizures. It wasn’t until I spent some time in the hospital with a bunch of wires glued to my head that they found where the problem area was in my brain and picked an effective pair of meds.
The result I’m referring to is having a really bad long-term memory. I remember very little from high school and college, which makes reunions extremely awkward:
“Hey, remember when we—”
“No. No, I don’t.”
As a result, I’ve only been to one of each: one for high school and one for college. I hate the idea of people reflecting on our good ol’ days and I don’t know what they’re talking about. I can usually recognize former classmates, but our history together? The classes we took, the events we attended, the games of D&D we played? Not likely. I hate it and it also scares me a little. I don’t like being in a room full of strangers in the first place, but a room of strangers who know me and I should know, but don’t? Even worse.
