Thoughts on Death (And smoothies. And hospitals.)

I’m vaguely enjoying the weight of this morning (2 hours before I go into the MRI machine— this MRI that’s finally making me nervous), I think because it reminds me of the… (wait for it, searching for the word… one minute later… going to thesaurus)… urgency of these times last year.

When every day felt like life or death, there was something invigorating to it. Something exciting. Fun, even.

Today is exciting. And I’m so tired of not being excited, of feeling so perpetually drab, so dull, so physically and emotionally immovable, that any kind of excitement— even this kind— is extremely welcome.
So actually, to be honest, I’m not nervous right now. I’m excited.

(**EDITOR’S NOTE: things are about to get a shade darker–but no more or less honest– so if you’d prefer to end on a happy note stop now! Ah what am I saying, it’ll probably end on a happy note anyway. I’m a sucker for a happy ending.)

If this news is bad news, my first thought will be either “shit, I didn’t get the script finished” or “shit do I have long enough to get the script finished?”
I’m absolutely sure of that. I’ve thought about it so many times. Probably every single day. Definitely every single day.
Clearly it’s the thing I care about most.

It’s odd when every time you leave the house you think little things like “if this is the last time I am ever at this place, should I leave the door unlocked so my friends can come and get my stuff?”
I think this stuff all the time. Like, multiple times a day.

Things like:
– “I should really print out hard copies of all of my scripts & things I’ve written that are important to me, and put them in a big very-easy-to-find-pile on a table in case… well in case things go downhill fast and I’m no longer around to be able to do anything with them.”
And like:
– “Is it better for me to take the freeway to ______’s house, or should I take that back way in case I feel weird and have to pull off the side of the road. If I’m going to seize and die, it’s better if I can pull over into a parking lot.”

It’s really weird being in public places and constantly trying to be aware of if I have Ativan with me (which can stop seizures from happening), as well as some form of ID so people know who I am in case I do pass out and die.

I’m always concerned that Dutch has her collar on too if she’s with me, so people know who she is in case I’m dead and can’t tell them. I don’t want her to get in trouble even if i do.

These are weird subtle thoughts, but they come out of thinking “I might die when I go outside today”, and it’s just odd thinking that every single time you leave your house.
And you’re not thinking it because you’re paranoid– you’re thinking it because you’re trying to be reasonable and logical and responsible. You want to make sure your dog has water in her bowl and there’s a way for your friends to get in in case you never come home.

Also– Despite me trying to make them less so, the seizures are terrifying again, now for several reasons:

1) Not being able to function normally (having to give up on the idea of driving somewhere, having to leave a crowded restaurant in the middle of dinner, and many other things like this that really make me feel like a real stick in the mud)
2) My doctor just had to go and scare me with a “yeah you can totally just stop breathing while having a seizure and die right there on the spot.” Thankfully this hasn’t happened, and I think it’s a bit of an exaggeration (or at least a real rarity) but anyway it’s still scary.
3) A friend’s warning (a welcome one, though) that her epileptic relative is a little brain dead from all the seizing she’s done. The last thing I want is any additional brain deadedness. I WANT MY REGULAR BRAIN BACK, EVEN FOR HALF OF MY DAY!
Man that would be nice!

The smoothies (for some reason this word just entered my head as a way of describing “light pre-seizures” and I think I’m going to keep it that way) seem to be increasing in frequency.
People call them “seizure auras,” and they are what you feel before you actually have a seizure.
Let’s call them “smoothies” from now on. Sometimes they’re like a déjà vu, sometimes they’re a weird sensory hallucination– they’re actually really fascinating to experience and hard to explain. Fun, but scary.

My smoothies seem to be increasing in frequency. I haven’t had any more seizures, just a lot more feeling “oh shit am i gonna have a seizure?” This is one of the reasons this MRI makes me a little more nervous.

The increased smoothie activity could be a result of all the healthy but yummy smoothies I’ve been eating. Or it could be related to anxiety. Perhaps over the MRI, although I truly honestly don’t feel more anxiety right now than at dozens of different moments over the last year. Far less, in fact.

So since there doesn’t seem to be a reason for them, that scares me a bit. Doctor Who said seizures are a sign of “tumor tissue on the brain”, which I need to clarify. Is it not also from the hole in the brain that one gets seizey? I’ll try to remember to ask him this in 2 hours when I see him. Somebody remind me.

For now, I sit here in a gown surrounded by other men in gowns, thinking once more how much I love the hospital.

This place is a damn miracle machine. How the hell did they figure all this shit out?

Thank science they did, cuz as the MRI tech just said with a smile: “You’re still here!” I loved that he said that.

I am still here. Barefoot in a gown. Waiting to climb into the Magical Magnet Tube That Sees Inside My Brain.

How fun is that!

8 thoughts on “Thoughts on Death (And smoothies. And hospitals.)

  1. I’m a sucker for a happy ending also. Wishing you happy results in regards to the MRI. Hang in there and once again, thank you for graciously sharing your experience.

  2. I’ve so enjoyed reading your blog these past few weeks since my mother’s own brain chance appeared. Wishing you a happy ending today!

  3. Hoping your day ended well, and that you’re well. If your brain chance is giving you hell again, I hope your excellent outlook and happy ending leanings are propping you up and helping you to find what you need to go where you need to go next.

    I’m so glad I found your blog- You are an amazing writer, and very generous one. Your spirit is incandescent- through fear, through brain-deadness, as you process exactly what your brain chance means in your big scheme – you shine with a a beautiful light.

    My father-in-law’s encounter with GBM took him from rocket scientist to six-year old in four months. We never had another real conversation, never were able to talk about what he thought or wanted. You are so obviously THERE; and it’s wonderful to read your words and sense the whole mind behind them. Please know that you are cared for and thought about by folks connected to you by your words, and by your brain chance. I send hope and strength and love to you.

    • Holy shit- that comment made my day.

      How’s that for articulate?

      Just got home from the hospital: MRI went well! More details to follow on the blog, as soon as I can summon the energy to type and not just fall asleep on the keyboarzzzzzzzzzzzzzzzzzzzzzzzz

      (Seriously though, thank you for your kind words. Just more motivation to finish writing what I’m writing about this whole experience!)

  4. I am completely in awe of you, dude. Yup…you’ve been “dude-ed”. You are fucking awesome – plain and simple. I just want you to know that there is a stranger (well, kind of – we were at GA together) out in Michigan who is rooting like hell for you. This blog is just amazing and I can’t thank you enough for being so raw and real about…well…everything.
    I hope today is an even better day for you.

  5. You are an amazing source of inspiration n courage….good thoughts, wishes and prayers coming your way all the way from India. Would so like to keep reading your blog…..for a long long time to come…..:)….makes my small little problems fade away into insignificance…

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