Last night, due to my early release from the hospital, I was able to attend a cabaret in LaCrosse that my brother completely envisioned from nothing and created: I’m talking promoted/produced/directed/choreographed/starred. He procured funding from patrons. He asked old college friends to come back and star, and they turned out in full force—trekking across country to join in. He asked my dad and sister to play guitar and drums, and another childhood friend to lend her talents on the keyboard, and I got to sit in the front row and watch this magic come together.
It was called Turning Point.
I watched him take these disparate songs and people and ideas and meld them into a cohesive show. There wasn’t a “plot”—just songs from different musicals performed in rapid-fire succession—but the intention and purpose was clear all the same. This was a show with a message.
And it spoke to me.
I heard it almost subliminally, through waves of emotion and buzzes of energy. The spirit of the show was raw and beautiful, like a fresh wound soothed by balm. That spirit infused everything, too—it was obvious in the love the performers shared for each other, for their craft, for these songs. I felt like I was watching something so intimate, so personal, that I was almost embarrassed—like I had walked in on something I wasn’t meant to see. And yet…there it was: laid bare on a stage, that display of emotion, ugly yet pure, to let those who watched it know that they are not alone.
Art is born of suffering. It must be so to connect. Suffering does connect us—I learned that this past year.
The purpose of art is to let others know that they are not alone. It gives hope. It comforts. It uncovers darkness and shines its light upon it.
I hope to someday create something that beautiful, with a message so powerful that it radiates and suffuses the darkness in hints and suggestions, through tiny cracks, much like sunlight.
Let the sunshine in.
This morning, when the nurse came in to check my vitals (after six whole hours of sleep!), she asked me a bunch of questions to see how “with it” I was, and she asked me if I knew what day it was.
Ohhhhh, I knew.
I knew because one year ago today, on January 21, 2014, I had a seizure while driving home from work. That incident completely changed the trajectory of my life.
And today, one year later, on January 21, 2015, I was told that I am being released (earlier than expected, even!) from the Epilepsy Monitoring Unit in Rochester later this afternoon.
Funny how that came full circle, on today of all days—a good omen, I hope.
These tests proved that I am actually epileptic. There was a concern that I might not be—that there might be something else wrong instead, some new horror. So that’s good. And it also means that I don’t have to change the title of my blog. (Whew.)
They found that in addition to seizures, I am also having these unexplainable “spells.” (The doctors could not describe them any better than that. My body seems to act like it’s having a seizure, but my brain waves were not showing any seizure activity, so…?) They want me to come back for more testing if the spells do not improve.
Some of these “spells” happened while I was on that second medication, so I didn’t actually have any seizures while on the Vimpat like I had thought. (Which is good news. They prescribed a combination of Keppra and Vimpat for me to try, and hopefully, that helps.)
As for the spells, they are most likely stress-related. (I have been a nervous wreck since I was diagnosed—I live in constant, sometimes paralyzing fear that I’m going to have a seizure, and I’m sure that has taken its toll.) They told me that I might have to have further testing in a spells clinic, but in the meantime, they told me to try Cognitive Behavioral Therapy to try dealing with them. They said I should try talking through my problems with someone.
Or, better still, writing about them.
Yeah. The doctors actually told me to write.
It sometimes seems like the whole universe is telling me to just…write.
So I’m going to get back in that habit, and let writing save me, and hopefully, a year from today, I’ll have some more awesome, life-changing news to report.
I am really freaking tired.
But I’ve had 5-7 seizures, so I have good reason—seizures are tiring. I push a button when I feel them coming on, and then a bunch of people come running into my room and ask me a bunch of questions while it’s happening: Where are you? What’s your name? Where’s the ceiling? Can you read this? (Then they hold up a piece of paper that says something about whiskey and water being a popular drink in Texas, and I have to read it aloud.) I’ve been partially conscious during these episodes, so I remember doing these things. It’s weird to be both aware and unable to control yourself.
It doesn’t help that they are depriving me of sleep, too, in an attempt to trigger more seizures to collect more data. I was kept up until 2 am and woken up at 6. And they keep bringing in exercise bikes and treadmills and making me use them (while strapped into that stupid jumper, which is pretty much like wearing a sweat belt). I love getting up and moving around (I am sick and tired of laying around), but I wish I didn’t have to wear the jumper/safety harness.
They tried giving me two medications at once today: a new anti-epileptic (Vimpat) in conjunction with the Keppra I’ve been on for months, and even with those two drugs in my system simultaneously, I am still having seizures. So I don’t know what that means. (It’s kind of scary, to be honest—can this be fixed or not?) And the doctors don’t say much. They just ask me questions and write things down. I’m not sure if they know what it means yet, either.
I’m not as bored as I feared I would be. I’m tired and I want to rip these wires off my head and take a shower and sleep in my own bed, but I am not bored. I have not had time to be bored. Between my exercise regiment, meetings with doctors, a steady stream of visitors, and having seizures, I haven’t had a moment’s peace. (I even had to move to a new room—this one is quieter, which I appreciate, but I’m no less busy here.)
I’m not as frightened as I feared I would be, either. I had visions of convulsions and falls and injuries and strange brain waves and tumor discoveries—I had two seizures on Monday morning before we were even settled into my room, just because I was so nervous about this study, but it hasn’t been bad at all. Everyone here is so great, it’s hard to be scared. The guy who refills the conductor gel in my headdress even itched my scalp for me, and the nurses are so friendly and helpful. (They even take pictures of me when I ask.)
I am tired, true, but I feel safe, I feel cared for, and I know that I am in good hands.
1. This is the thingy that my headdress wires are plugged into, and this thingy is hooked up to a computer. Don't ask me how it works--I have no idea. 2. This kind fellow refills my conductor gel and itches my scalp for me. 3. The second drug they had me try. (I'm not sure if it worked, though. I had two seizures in two hours after taking it.)