Please Allow Me To Fill You In.
Tuesday December 17th 2013, 2:45 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Me, Myself, and Reid

I’m on some very sedating medications and I’m not getting very good sleep. This is kind of a terrible combination. If you’re one of the millions of people that’s ever really wanted to experience what it’s like to be a zombie, without all the brain eating or getting shot in the head with a shotgun, this combination is totally for you!

I’ve been spending a lot of time in bed trying to get any kind of good sleep. The rest of my time has been spent not in bed, trying to act like I’ve been getting any kind of good sleep. This act requires not falling asleep in my soup, not falling asleep in anyone else’s soup, and talking in an energetic manner in which! I just imagine! that there are! ¬°exclamation points! scattered throughout everything! I’m saying!! I’m a real method actor.

Anyway, being all zombied up has made writing difficult. It’s really made everything difficult. I’m not really doing much that I want to be doing, which is a lot less of what I want to be doing than I would ideally like to be doing. I’m not getting out of the house much, let alone my bed. At least it feels that way. When you’re a zombie, you kind of lose any and all sense of time. And my sense of time was really messed up before, anyway.

It’s possible I’m spending more time out of bed than I think and that I’m doing things like blankly staring off into the distance. But I’m definitely not doing much of the kinds of things I want to be doing, like writing, playing musical instruments, or, most especially, socializing.

I’m on these sedating medications because they help ward off the evil spirits that haunt me at night. It occurred to me recently that in previously writing about my inpatient EEG, I’m not really sure that I could have given any less important information. So here’s what happened:

-The EEG was performed to test whether or not I am experiencing cute li’l seizures in my brain that are causing hallucinations, which I may have previously referred to as “evil spirits that haunt me at night.” But that was mostly facetious.

-The doctors took me off my anti-seizure medications slightly warmer than cold turkey. They did it over two days, which did not help prevent withdrawal at all. Cold turkey would’ve been better, because it would’ve been faster and there would have been the exact same amount of irritating withdrawal effects. Also, “cold turkey” sounds more appetizing than “slightly warmer than cold turkey.”

-I had a lot of hallucinations in the hospital while my head was superglued to all those EEG wires (or were they superglued to my head?) that showed all the electrical activity going on inside my brain.

-The EEG did not register any abnormal electrical activity in my brain while I was having full-on tactile hallucinations. This means one of two things: A) I don’t have epilepsy or, B) my batteries were drained. Since the notion that I run on batteries is preposterous, the doctors concluded that I don’t have epilepsy.

-Not having epilepsy is unquestionably a good thing. I mean, there’s not really any reason anyone would say, “Aw shoot, I sure wish I had epilepsy,” except in the extremely narrow vein of, “Aw shoot, I still don’t know why I’m having hallucinations.” But I’m pretty happy I don’t have epilepsy, even if I don’t know why I’m having hallucinations.

-There are other kinds of seizures that are not caused by epilepsy. They can be just as l’il and cute and in the brain as epileptic seizures, but they can’t be detected by monitoring the electricity bouncing around the brain. In fact, there’s not any one super easy way to detect non-epileptic seizures. So… that’s kind of a bummer.

-At any rate, there’s really strong evidence to support the fact that I’m having seizures and that they’re causing my hallucinations. For instance, when I take an anti-seizure medication, my hallucinations go away.

If I can break out of the bullet points (I guess they’re really hyphen points) for a moment, I’m really tired and really need to go to sleep. I’m also having what feels like neuropathic pain in my fingers. It really hurts and is not something I can remember having since chemo. Anyway, I want to finish this tomorrow so I’m not going to publish it tonight. Evil spirits that haunt me willing, I will finish this tomorrow (it’ll be today to you). That’s the plan, anyway. Something else could always come up, like, say, staring blankly at a wall, but I’m really going to push myself to get this done.

You have reached the end of Side A. Please flip the tape over to Side B.

Welcome to Side B.

Well here we are in the future! And, look! I’m going to write the rest of this post! When I say it’s the future, I mean that it’s the future of me from yesterday, a guy who didn’t really have all that much faith in the me of his future in finishing this up today. Which is today. But here I am doing it, you jackass! Take that, Past Reid!

Sorry for all the super-advanced temporal discussion, I’ll try to tone that down for the remainder of this entry.

There are only a few more things I’d like to add about the inpatient EEG:

-A big group of friends sent me a brand new iPad to use in the hospital so I wouldn’t get bored. I can’t overstate how amazing my friends are. Not just because they send me material goods, but because they’re a big, huge safety net for me. While I’m tightrope walking between health, happiness, control and depression, loneliness, and confusion, I remain confident that they will catch me should I fall.

-They’ll be there because they’ll be rallied. Amongst my truly amazing friends, there are a few pillars that have made it clear they will never stop supporting me and that they will go out of their way to see to my well being no matter what. Friends from my very early childhood through friends from college and beyond.

-My family, my sisters and my parents, are pillars as well.

-I’ve been asked a few times lately if I’ve lost hope. Each time, I’ve considered the question very carefully. And each time, I think about these pillars. They give me hope. It doesn’t go away through all the confusion and depression and waiting, of which there’s a lot. I’m very lucky.

-The waiting is the worst. During chemo, there was something planned every day to eradicate my leukemia and make sure it knew it was not welcome to come back. Since then, I have had doctor’s appointments months apart, with no new help or guidance in between. Being sick in any way, mentally, physically, whatever, anything, and waiting is the worst.

-I think I spent more time in 2013 waiting for doctor’s appointments, test results, and important phone calls than anything else. I think, despite all that I’ve gone through in recent months in trying to deal with my hallucinations and immune system (and yes, I feel very much like “I’ve passively gone through” these things rather than “I’ve actively done” them), despite those things and all the scattered, delightful brief moments of joy in which I’ve been able to take part, 2013 has been the least productive year of my entire life.

-I will never, ever have a year like 2013 again.

-In January, I will be meeting with a doctor who specializes in non-epileptic seizures.

-In February, I will be traveling to Rochester, Minnesota to undergo a full health evaluation at the Mayo Clinic. It will be a comprehensive analysis of every nook and cranny of my body. The Mayo Clinic specializes in investigating what health problems people have that no one else can seem to put their finger on.

-In between now and those two appointments, I’m working with my psychiatrist, in whose care I feel very comfortable. He wants to get me better as much I want to get better. He is very skilled at formulating new plans and new ways to take on my problems, but also keeping me grounded so that I won’t be crushed if a new idea doesn’t work. He’s taken over the role of several of my other doctors, which I would say is not ideal. It’s not how the system is supposed to work. But, honestly, I’ve had several people on whom I relied this year let me down. Or, more appropriately, drop me from a great height, smack onto the ground, left to pick myself up and move on. My psychiatrist has been the antithesis of this. He’s done everything short of holding my hand, and I’m sure if I asked, he would.

-There are several other professionals that care deeply about me and my health. But I either barely or never saw them this year, simply due to the circumstances of the year. I look forward to getting back into contact with all these people in 2014.

In closing, I’d like you to know that I grew a mustache for Movember to raise awareness for men’s health issues. As Movember came to a close, I decided to keep my mustache, as it was described variously, by other people, as “dapper” and “societally acceptable, at least on your face.” So it’s still there. Right there on my face.


2 Comments so far
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Your writing, even when seemingly at your most focus disadvantaged & creative difficulty, still stand head and shoulders about most of the rest on what I read here and there regularly on the internet and beyond. Even when you feel the least satisfied and driven with what you are doing, it’s still just as funny, touching, interesting, clever and just plain entertaining, as most any other writer out there, and often more so than a good deal of them.
You are an inspiration, and a just plain awesome guy. I miss you more than I can say, I love ya, and I’m proud to call you a friend.
As ever pushing and focusing on that day when your body and brain catch back up with where you deserve to be,

Comment by Matt Gallo 12.17.13 @ 7:38 pm

Your style is very unique compared to other folks I have read stuff from.
Many thanks for posting when you’ve got the
opportunity, Guess I will just bookmark this site.

Comment by something random 10.02.15 @ 10:06 pm

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