December 7, 2024

I worry a lot about my mind these days, and I have pretty good reasons. And I've been talking about it more, and to more people in my life, because I can't seem to get across how panicky I get when I suddenly forget how to use email. Your experience might vary, dunno.

And they tend to reassure me, tell me they notice nothing, and actually that's not a bad thing. I figure if I continue to worry and they continue to notice nothing, that's at least a holding pattern I can live with. I worry about everything anyway. It's the whispered conversations about try to keep matches and sharp objects away from me that I dread.

This has been enough to mess with anybody's orientation, anyway. It's been over two years of essentially being alone -- my son, who is 35 as well as autistic, is solitary and not really interested in me, and my wife works a lot and is always gone, it seems. And when she's here she has other things to do for her own sanity. I'm pretty sure that some days I only say 100 words or so to other people.

More to myself, some days a lot more. You know. But it can be lonely.

So everything's a little wacky, and "disorientation" is actually a good word for it. I'm never quite sure which way is which, and that seems a pretty natural response to isolation for this amount of time. I can see how a lot of this is just my reaction to all the newness of this.

I don't believe any of that, but you know. Could be just that.

I started this group because I know certain people are curious and want to know things, and this is an easy way to limit my posts about my chronic situation to people who are interested, and a way for people to opt out easily without having to block my entire profile. And a way to write about this, obviously.

I had a discussion yesterday about this and felt some clarity  -- I think it's possible I only communicate when I feel coherent enough to do it (I'm not incoherent, geez, but you know; articulate? Not sure), so doing it by writing rather than phone or even video (better than phone by a mile).

That's why I love my text partners, even the occasional ones. Everyone understands that people respond when they can with texts. Days can go by and somehow that's always understandable, while ignoring my emails for more than a day makes me crazy, for some reason.

There are a few people who have been reading these things since the beginning, though, because for a long time I only posted to certain friends who live out of state (maybe 1-2 exceptions), people I knew would listen but not feel compelled to do anything because they were too far away.

So I understand that a sense of history here might be missing for some. When I wrote about oxygen yesterday, I knew I'd been talking about this for over two years, frustrated that no one seemed as concerned as I was, and eventually figuring maybe it was OK if I didn't have problems breathing. I considered oxygen back then but because I'm not short of breath at all, no one brings it up and it felt weird anyway.

There's really no guarantee that simply getting more O2 into my lungs will get more into my bloodstream; I can see a case pro and con, but at this point I'm willing to try, of course.

So it's not a slam dunk, and I apologize if it seemed that way. It's not a given that oxygen would do anything at all. I'm getting aggressive because I can't remember anything, and at some point I worry about things like tying my shoes, you know? That would be the kind of thing I have trouble with.

I have physician friends I bounce questions off and who send me good stuff I might miss otherwise (lot of medical journal articles). As I've said, medical terminology doesn't daunt me at all. All sorts of people I trust help me with research, too, understanding that I read everything so they try to find out-of-the-way things. Julie probably knows more about what's currently happening with research than even I do.

If anything sounds obvious, then, or makes you think "why doesn't he try this?" know that I almost certainly have. I have a team and also a strong interest in getting better.

There are some of you I used to see all the time, and when you leave a comment I hear your voices and see your faces. I miss everyone. Everyone.

And then there those of you from long ago and far away, and it's just comforting to know that you're there. You can't fix me but you're there, I can feel you, I know this. I'm a lot more mystical these days (this is a joke, which means also pretty true), and I trust certain senses that are probably not real but maybe should be.

My spiritual life feels fine, even full -- nothing focuses my soul more than uncertainty, it seems. And I have people who walk with me in this regard. No worries there.

I approach every day now well aware of how little time I have left. My doctor mentioned a while back that I wasn't "actively dying," which is funny and also a good way to put it. I could live 30 more years; that's not inconceivable, if I think unlikely.

My potential is limited in a couple of ways, then. There's nothing to do about it but try to find joy wherever and whenever. To tell people what I want them to know. To learn more about these things I'm suddenly fascinated by (anthropology, who knew?).

I know it might seem unfair. It's REALLY unfair. Doesn't matter; like I'm the first one, smh. Or like it's new. My son had a major crisis in 2008 that cost us a fortune and more stress than you can imagine. A year and change later, my wife developed a meningioma that threatened her vision (she lost it in her left eye), not to mention her life. Six months following surgery she had a heart attack, and while being worked up for that they discovered breast cancer. All within 9 months. All needing surgery. All costing more money than I could comprehend being able to pay. It was insane.

But I made it through that, I know, because in 2006 I stopped drinking. It was hard and painful for everyone, but I entered this period of craziness sober and more calm than I'd been in maybe my entire life.

That's not a part of it. That's everything. Nothing here works unless I stay sober, and for 18 years I've done it. Covid schmovid. You wanna take me out, you'd better bring kryptonite. I'm going to be fine.