12:47am March 21, 2013

I am a frustrated writer. But not the usual kind I guess.

Ever since before I went into the hospital last fall, there is an article I have wanted to write. It is an article based thoroughly in love. It is an article describing life and death issues. It is an article that could be written from many positions. But I am in a relatively unique position to have knowledge required for the article in my head.

I will not describe it further, because the last thing I need is to reveal the contents before the article is finished. Describing it in summary is not the same as writing it and would draw reactions from those who imagined they knew what it was about (and failed).

Last August I stopped eating all but broth and tiny amounts of grits. I then aspirated, as happens much more often with every passing year. I was weak from not eating. I got aspiration pneumonia. I became severely delirious. I was admitted to the hospital and treated with huge amounts of IV antibiotics. This made my stomach even sicker. After the pneumonia was cured, they worked to diagnose and treat gastroparesis until I could come home.

I was in there about five weeks. I was still severely delirious upon arriving home. I went in and out of it and stayed really bad until I worked out my own cognitive rehab program and pulled myself further and further out of delirium by my fingernails. I taught myself to read books starting with young children going all the way to adult. I can still tell my cognitive state by whatort of conver kind of books I can read.

Writing has proven harder. You may see me writing things like this. But this is more like talking to someone than the kind of article writing my main blog relied on. My main mode of verbal communication is writing at this time in my life. Writing as communication is not as hard. But other kinds of writing are totally different. There are many kinds of writing I simply can’t do, or can only do right when inspiration strikes, and that is not good enough for what I want to be able to do.

Delirium is a kind of brain damage. I have had delirium every hospitalization over the past several years. My durable power of attorney has done some reading and estimates it may take two years to regain my previous cognitive skills, if I regain them at all.

Delirium in me seems heavily tied to pain and nutrition. The more pain the more delirium. The less food the more delirium. With gastroparesis I’m having real trouble even with my liquid diet of Ensure. My pain level has been high. Hospitalization makes my delirium far worse and I’ve already been hospitalized once more for gastroparesis. Delirium is a spectrum from mild cognitive dysfunction to severe loss of contact with reality, and usually has an in and out pattern like you can be lucid one moment not the next. And it’s always caused by some sort of illness, pain, etc. So I am actually experiencing a mild degree of delirium right now, in that I haven’t fully recovered my cognitive functions.

Also I am affected by an ongoing loss of energy that threatens to suck me in like a whirlpool. Every time I am hospitalized I experience severe exhaustion beyond what any healthy person and even many chronically ill people can imagine. Then I have to climb back from that. In the past several years, I haven’t climbed back before another hospital stay or major illness has happened.

Since January I have had to be on antibiotics four or five times for aspiration-related chest infections that verged on but did not become pneumonia, always in extra danger because I have bronchiectasis. I also got a head cold that would have been minor in a healthy person but very much set back my recovery.

These things keep happening. Drains on my mental resources. Drains on my physical resources. And mental resources are after all physical so they are affected by drains on physical resources – that’s how delirium happens. It feels like it may never end.

And in all this I am unable to write that one article. The article that I feel perfectly positioned to write. The article that I have never seen written yet, that could really help a lot of people. A very wide range of people.

It means so much to me to write this. Not for ego-related reasons. But because someone has to write it and here I am, perfectly in place to do so. To my knowledge, people have skirted the topics but not written the same thing.

And I can’t. Not right now. I’m frustrated. Granted I’m sick and infected and been sleeping all the time and can barely read children’s novels. But still. When will I write this? I don’t know. I don’t know anymore if I’ll ever write it. I feel trapped and discouraged and frustrated by all this.

I know I may eventually write it. Maybe one day I will realize that even if things aren’t getting better, I’d better write it now instead of assuming there will be a “better time” I can write it. I don’t know. I have no idea.

I’m just frustrated that nothing I do seems to produce the article I want to write. Maybe this frustration is pointless. Maybe I need to find a way not to be frustrated, or a way not to care about being frustrated, whether I ever write it or not. I don’t know. I don’t know.

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