I’m not entirely sure where to start. I’m 40 years old and there’s a lot of backstory. I’m not sure how much context you really need. I’ve also got a bunch of different things weighing on my mind.
I guess the short version is that my immune system has been trying to kill me for my whole life. I’m not looking for medical advice. I’ve been to every doctor who could conceivably help and tried everything that was at all likely to do more good than harm. Where I am is the best we can do for now. But the upshot is that I’ve got a complicated tangle of sleeping disorders and other medical issues that keeps me from being able to live a normal life. Even with painkillers I’m never not in pain somewhere and I can never predict what will be hurting and how much. I’m constantly tired and never more than a short step away from the kind of critical exhaustion that leads to mental breakdowns. It’s hard to concentrate on anything, and attempting to do so wears me out frighteningly fast. When I went on medical leave from college, I was taking the lightest courseload possible, sleeping literally 12 hours a day, and doing absolutely nothing that wasn’t necessary. Within a few weeks, I was so exhausted I was in the same mental condition as I’d been when they took my wisdom teeth out and gave me enough anesthetic so that I was only vaguely aware of what was happening within a couple of feet, but still awake enough that I could give one-word answers to simple questions. Also, I’m on a 25 hour day (as a rough average), which means my waking hours change from week to week. I’ve got a few other things going on, too. To the point that the state agency that specifically exists to find gainful employment for people with severe disabilities (training them up, finding employers who can be flexible, providing accommodations, etc.) told me that I’m beyond their help. I’ve got too many limitations in too many directions for them to be able to find anything I can do, even with help.
So I haven’t really worked a day in my life. I did some tutoring in high school. I taught calculus for a semester in college. Now I can’t think my way through material that I used to teach. I’ve just lost too much processing power. Physically, I can sometimes walk a few miles, on a good day. But on bad days (which are not infrequent) I can hardly even sit up. I spend a lot of time with my head spinning from pure exhaustion. Sometimes days or weeks at a time. I make plans to do projects and I just physically can’t follow through.
My family is trying to get me established. They just bought an apartment for me in the same building as my big sister. Which just makes me feel guilty. Like I’m a parasite. I’m not productive, and I’m just living off family resources. I’m lucky they can afford me. Most families couldn’t. And that’s a bit more guilt right there. Even if it’s not my fault and my family adamantly doesn’t see it that way, it wears on me.
I feel like a useless failure.
Oh, yes. And I’ve had suicidal thoughts and urgings since I was in high school. I’ve mostly put them off because that decision is final and irrevocable. It puts an end to all possibilities. And I can’t do that until I’m absolutely positive. (I also know it would hurt the people I love most.) But it just seems like my life is empty and hopeless. I do my best not to dwell on it. (Twitch Music has helped a lot with that, especially when I’ve been stuck on the couch, with my head spinning, unable to focus on anything more taxing than music, including stupid TV shows. But it’s a way to have company on my own terms, as I’m up to it.)
But now things are going to change. I’ll have to do more to take care of myself, and I don’t know that I’ll be able to do it. I can rely on my sister for support… except that, for all her love and kindness, she is painfully ignorant of the realities of living with disabilities and she doesn’t want to be burdened with the details of my everyday struggles when she’s got more than enough to deal with in her own life.
Last year, for the first time, I had a girlfriend for a few months. It turned out that our needs were too different and we parted amicably, but it opened up a part of my heart I’d left closed for a long time. I’d been focused on trying to fix my body and find a way to have a life before I was willing to even look to try dating. So now I’ve still got no life and a broken body and a mind that’s scattered and I’m never more than one bad night’s sleep away from suicidal depression and it’s only a short step from there to a mental breakdown from pure lack of sleep… but on top of that I’m lonely. And I keep seeing people I like and respect who also happen to be female and single. And, as a superficial bonus, beautiful. I can tell myself why it wouldn’t work. I live too far away from her. I’m at least a few years too old for her. There are good practical reasons we wouldn’t be compatible. And that’s without getting into my medical limitations. Hard to build a life with someone when your sleep/wake schedule is a mess and you don’t know from day to day whether you’ll be able to follow through on plans. But it doesn’t keep from wishing and pining, more for the idea of having a loving relationship than for any one particular woman, even if there are a few who tug at my heart more than most.
I don’t know what to do about any of it. I’m going to try city life. See if having opportunities right outside my door at all hours will help. Being closer to my nieces and nephews (the best part of my life) will be good. But I still feel lost and worthless. Going to give voice acting a shot. Just because when you can’t move and you can’t think, your voice is about all you’ve got left. (Except that I spend a lot of time too tired to speak out loud. And also I had to have throat surgery for one of my sleeping disorders and now I’m finding there are a bunch of sounds I physically can’t make. But still, people tell me I have a nice voice and a pro voice actor told me he honestly thinks my readings of scripts are good enough to make it.) I’d just need to find work from home where it doesn’t matter when, exactly, I do the recording. I don’t know. It seems a long shot. But it also seems like the only chance I’ve got. We’ll see.
I’m just so tired of it all.
I try to put it out of my mind and just go day to day, but that itself is disheartening.
Meantime, I’ve had something else buzzing around my head. It shouldn’t be a big deal, really, but it’s been in the back of my mind and I haven’t been able to get a grasp on what to do about it.
See, someone I know said something… let’s say borderline racist. If it was clearly racist, I’d know what to do. If it was out of nowhere, I’d know what to do. But… I can see where it’s coming from. I can see that there’s legitimate reason to be personally angry at some people. it just seems like that anger is spilling over into millions of people who don’t deserve it. It’s not clear that that’s the case, but it looks an awful lot like it. Which is sadly not uncommon. It’s still enough to make me deeply uncomfortable. It’s kind of personal to me, too, because even though it’s not targeted against me, it’s the same kind of attitude that’s driven the persecution of my people that nearly wiped out my family in my grandparents’ generation. (And also prompted repeated vandalism of my elementary school and a lot of other things that I and my family have personally experienced.) So I’m pretty sensitive about seeing this sort of thing happen to others, even when it’s just words. Because that’s where it starts. But it’s not something I can just casually bring up. And it’s a very sensitive subject all around. So instead I’m just feeling confused and uncomfortable.
I don’t know. I’m just so worn out. And I don’t really know what I need. Platitudes won’t get me anywhere. But I’ve tried everything practical I can think of, and I certainly don’t need to be told to go try this herbal remedy or fad diet or whatever. Maybe it’s not even worth posting this. But I guess it can’t hurt. I hate feeling stuck like this.