Don’t ask, I can’t tell, I can’t even explain.

[Originally written on October 17, 2012, after a hospitalization for pneumonia and gastroparesis, in which I experienced severe delirium for five weeks. This was my first attempt to explain what I was going through. It was the basis for part of the story in my comic.]

She skated towards me wearing a red winter scarf. My feet were frozen to the ground. She waved her scarf in the air from a distance. It was the only thing with color in sight. Then it flew through the air and landed in my hands.

I clutched the scarf tight. I didn’t see but felt her fall. I didn’t see but felt life struggle to maintain itself, and fail. I didn’t understand. I never understood. I couldn’t make sense of anything anymore.

I never let go of the scarf. I unzipped myself and wrapped it around my heart. To keep everything warm when nothing was certain. And then I cried until I thought I would never stop.

And I’ve tried to hide what is gone. But I’m not sure if it fools anyone. There are places we used to go, things I used to do, and they seem as dead as she is. Only sometimes I feel something squeeze my heart. And things pop into focus once again, in color.

I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.

I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.

If you wanted something different, I can’t help it. This is what you get. If you don’t understand, maybe it’s not here for understanding. I’m just exhausted, and didn’t have the energy to tell you the normal way. So I took what I had and I went where I could. And this is what you get.

Don’t tell me what I should have said. Chances are, I couldn’t. This is brain damage we’re talking about. It isn’t convenient. It doesn’t instantly vanish. If I could only tell you a tenth of it.

It’s hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. It’s hard to know I can’t say anything unless it follows a particular pattern, like this does. I couldn’t say this part without all the rest before it. All the rest. Not something else. Something acceptable.

I’m scared and I couldn’t tell you why. It’s winter and the wind is blowing hair in my face. I’m glad I have the scarf around my heart. Otherwise I’d get lost in all the snow. Everything used to be familiar. Now there’s so much snow I can’t identify anything. Or not much of anything.

Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and I’m shaking, and I don’t remember anything. Not what I just said, not that you’re alive. In here, I don’t know you. I don’t know me. I don’t know anything.

But it always fades back. And there’s always more. And I always find myself writing this. To you. To who? To me. To they. I don’t know. All I know is I couldn’t have written this any other way. And maybe someone can even figure out what I meant. Because it’s in there. If you look in the right places, and with the right eye for the reality of one experience or another.

I am through, so I hope, sitting up all night with neon pink insects eating my eyelashes. Lying in a sunlit room with parts of me flying into the sky and back again. Night after night trying to avoid being flattened into a grid pattern and dissolved. In lots of pain. With lots of nausea. And I hope never to visit that realm again. A lioness carried me out.

Not that anyone noticed. They come in and change your IV bag and the hours between are left for you to lie still and drift into bizarre hallucinatory worlds that always have an undercurrent of hell on earth to them. They don’t check you for it. That’d take time. So of course they’re blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.

I’m out. But it’s not over. And I wish I could tell you the things I can’t say or understand. But they’re just lost. And I get scared if they’re ever coming back. And this was the only way to tell you. So don’t ask it to be less roundabout or full of things that didn’t literally happen. Because right now that’s one thing I can’t do, can’t do at all. Don’t call this creative writing it’s the only damn writing I have at all this moment. And what I’ve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If she’s dead or asleep, I can’t tell you, don’t know, but it hurts.

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The Scarf — A Comic About Delirium

This is not a BADD post.  It’s just a post I’m making for people who might have wondered.  And people who didn’t wonder, but might want to know.  And people who might have experienced something like this, and might be feeling really, really isolated.

In the fall of 2012, I was hospitalized for roughly five weeks with aspiration pneumonia related to gastroparesis and bronchiectasis, and I now know that undiagnosed adrenal insufficiency played a huge part in why I got much sicker than anyone thought I should be.  (My doctor now thinks I probably should’ve been in the ICU during the first part of that stay.  At the time, the first of several hospitalists took the position that he was only going to treat my pneumonia and was going to ignore all of my other conditions.  It was hell on earth and there were times I only existed by the skin of my teeth.)

It was a grueling and traumatic experience.  Especially things related to the severe delirium I dealt with both in the hospital and after I returned home.  And the aftermath of that delirium, which took over a year to fully dig my way out of.

The worse your cognitive impairment after a period of delirium, the more likely you’ll die later on.  So delirium isn’t just this weird thing that causes disorientation, cognitive impairment, and sometimes hallucinations.  It’s also something that can kill you.  It’s a form of brain damage, as far as they know, and each delirium makes you more vulnerable to further delirium.  But exercising your brain can help.

So I started taking classes online, to try to keep my brain occupied.  One of the classes was a class on comic books.  The big assignment for the class was to make a mini-comic.  I’m not good at that kind of drawing, and I’ve never been able to finish anything like this before.  But to my surprise, this comic pretty much poured out of me.

I want to make one thing clear though, before anyone reads it:  This is not the literal narrative of what happened to me.  It combines elements of things I experienced in a literal way, elements of things I experienced in the delirium, elements of a story I wrote later on in order to try to deal with the feelings the delirium and hospitalization caused in me, elements that are pure metaphor, and elements that are put there to make the story flow easily.  This comic is about emotional truth, not literal truth.  For instance, I didn’t just “wake up from the delirium and squeeze someone’s hand” (although there was a period of time when holding someone’s hand was quite important) — that’s just a shorthand for a much more complicated process than I could do in seven pages of comics.  The tube feeding came months after the first hospitalization, not immediately.  And obviously the person I drew looks nothing like me.  Some of the story follows a stereotypical story pattern for certain things, specifically so that I could explore others without having to flesh out every detail that varied from a stereotype.

The PDF of the comic is available at the following link:

https://dl.dropboxusercontent.com/u/92647909/TheScarf.pdf

Here’s a picture of the front page:

There’s two things that I hope about this comic:

1.  That it can express something of what I went through.  Because it was one of the most profoundly isolating and lonely experiences of my entire life.  It seriously felt like going into the underworld or something, and after I came back I felt like that world was all over me and I couldn’t break through to the world that everyone else was in.  And nobody could talk to me about it, and nobody could offer any advice, and I felt like I still had a foot in that other-world for over a year.  And like nobody could really see me, because I was in that other-world, and I couldn’t see anyone else, because I wasn’t in their world, and it was very frightening and isolating and I most of the time had no words to articulate any of it.  Except occasional bursts of almost-poetry.  But it felt like whenever I said anything, people just stayed silent, they didn’t know what to say or how to respond, and that made me feel even more distant and frozen and dead.  Also whenever I was hospitalized or sick I’d fall back into delirium even more easily and that didn’t help either.  Writing this comic was the first way I felt I could express any of that feeling in a big way.

2.  Even more so, I hope that if anyone else has gone through anything like this, that it speaks to them in some way.  That’s the other reason I’m posting it here.  My friend urged me to make it public for the sake of people who might be feeling the same isolation.

Also, that holiday season, my mother bought me a red scarf and pinned a note to it saying “to wrap around your heart”.  It means everything to me.  I still have it, and I especially wear it when I’m feeling like I’m being dragged too close to the delirium-underworld again.  Which happens, but less and less often, especially since treating the adrenal insufficiency.

I hope this is meaningful to someone besides me.