I’ve been meaning to write this post for about 2 months, as thoughts have been rattling around in my head, but I’ve never found exactly the form I wanted it to take. So, rather than waiting another 2 months, I’m just going to wing it and see where it takes me. Plenty of it is going to be in “beating a dead horse” territory for those of you who have been around a while. Plenty of it may sound like “Oh, poor Scott” shit, but that’s not what I’m going for here. I just feel an obligation to those of you who know me and/or read what I write to keep you up-to-date on how I’m doing and perhaps more importantly, what insight I’ve gained on how I’m doing, and this is how things are, as of today.
As pretty much anyone who reads this site knows, I’ve got issues with sleep which get in the way of me having what people often describe as a “normal” life. Plenty of people in this world have problems that are harder to deal with than mine, and I feel for them and try to help out where and when I can, but this problem is mine and it’s hell to deal with most of the time. It has never been formally diagnosed in me (the one sleep study I took part in, no joke, was interrupted by a fire alarm malfunction that was not reported in the documentation of said study!), but the disorder that mine most closely aligns with is Non-24-hour sleep wake syndrome, which is supposedly very rare, but not unheard of, in sighted people.
To frame things a little bit, I’ve been sober for coming up on 10 years this Friday, near-completely clean (a few minor slips, none with anything non-prescription or illegal in 4 years; some minor self-medication for anxiety since then, before I was in treatment, but nothing abusive or habitual) since 2001, I’ve been in therapy for a year now, and medicated with Zoloft and Xanax (for occasional bouts with anxiety) for around the same amount of time. The Zoloft, surprisingly enough to me, has been a huge help with depression, and the Xanax, usually taken at half the lowest dosage on the market and not taken more than about twice a month, does the trick with anxiety without creating any measurable dependency issues. I’m also exercising more now than I have in a very long time, probably since late childhood (I used to ride my bike a lot then), and that’s helping me feel better on some levels, especially now that I’m learning how to do it without hurting myself. These steps have helped me improve my general quality of life, but my sleep problems remain a constant.
For years, I’ve been haggling with professionals in the psychiatric and psychological communities over the root cause of my problems. They’ve insisted habitually, perhaps because most of them have no real grasp of sleep disorders, that my problem was depression and/or anxiety-related, but I’ve been treated successfully for both for a pretty fair deal of time now, and still, the sleep issues persist. I can be tired and without anxiety, yet totally unable to sleep. I can be very well-rested and without any overt signs of depression, and fall asleep easier and for longer than I should be able to. I think it’s fairly safe to say “It’s the sleep, stupid!” now.
The major lifestyle-related problems with Non-24 are that, if you have it, having a steady social or professional life is difficult at best and impossible more often than not. It’s part of why I put so much emphasis on keeping in contact with folks, because if I don’t, I can quite easily get lost in my own world. It also makes it extremely difficult for me to hold down work. I also find it unethical to go into a place of employment and tell them “yeah, I can show up” when I never know if my body will let me do so at all, let alone in the kind of shape one should show up for work in. Let’s make no mistake about it, I have held down jobs in the past, but I kept them mostly for short periods of time, and in the cases where I lasted longer, I kept them only because my employers were either between a rock and a hard place, or REALLY patient with me. I can provide references to that effect, too. I’ve even managed to fuck up work-at-home, make-your-own-hours jobs royally on occasion because of this (though, at the time, the drinking and drugs didn’t help much either…).
I’ve been through the merry-go-round of applying for Social Security disability/SSI before, about 6 years ago, and it got me nowhere, more than likely because I lacked the resources and the common sense to go to a lawyer. From what I’ve heard, it isn’t any easier to get those benefits now, particularly without a diagnosis (and right now, I don’t have one relating to the sleep), and the idea of going through a ton of red tape again is really daunting, especially when you think about going through a long process to get a stipend which is, at best, pretty limiting, and would have me worrying about making money openly off of anything that I do for the rest of my life (lest I give my benefactors an excuse to strip me of my benefits). So, that leaves me in a bit of a pickle, as usual.
My survival at this point, things like a roof over my head, food, gas, clothing, medication, therapy (which has been a godsend, now that I’ve finally found a decent therapist) and any of the little things that make life more than just survival (like being able to stay on the Internet, for one), depend largely on the generosity of others, mostly my family. This, of course, makes me feel like crap, for all the reasons that a person with a conscience would feel like crap about it. One of my parents is nearing retirement age, another one got forcibly retired when they had a serious accident at work about 14 years ago, and neither of them is in the best health. My sister’s doing OK, but she has plenty of her own things on her plate, and I’m not, nor should I be, her problem, really.
I do what I can, when I can, to ease the burden. I’ve been going through the large amount of clutter collectables, books, music and such that I accumulated during better times, and have been having some success unloading it on Amazon and elsewhere. I make a little money here and there from Second Life, but mostly I just break even. The ads on this site buy me about a pizza a month, if I’m lucky. I host web sites for a few people (and am able and willing to take on a few more, or refer you to people who can handle bigger needs; if you’re looking for hosting, drop me a line and we’ll talk). When I’m able to, I help people out with their computers here and there, but my level of expertise is not the best, and there are big corporations in the field now who do enough volume to beat my rates consistently, and with more after-market support. I would start writing professionally for other people again, but honestly, I’d need to have myself a bit more together before I’d start taking on serious pro jobs, especially with the deadline issues I’d have. I’ve been thinking about going back to school to polish up my skills in a number of areas, this being one of them, but again, even if I qualify for some benefits at school, it doesn’t pay for everything, at least not at first, and I’d need to be able to show up for school, too.
Because I’ve taken the steps I have, I am usually able to keep a little gas in my car, I’ve been very slowly accumulating a savings account (like, 25 cents a week slowly, except when I end up with $100 or more in my hands for some reason, in which case, I put 10% of it away; this has happened a couple times this year), and like I said, I’m able to do things here and there that make life a little more bearable. Once in a blue moon, I buy a book or two. I eat out once in a while, just fast food or something like Starbucks (though I’m adjusting my diet and cutting some of that out because of the running). Perhaps my biggest “frivolous” expense these days, if you want to call it that, is when I go to the baseball card store about once a week, and spend about a buck and a half, two bucks on average, on cards. Just picking through the dime and quarter piles, mostly. Once in a blue moon, I’ll splurge on a card or two, but usually, it’s a few dimes, a few quarters. Money I could be putting in that savings account to bolster that quarter a week that goes in, sure, but at the same time, how many of you that are reading this and thinking that along with me have spent more than $20 eating out this week, or about that on drinks? If I have more than $20 per week to spend on anything (gas included) most weeks, it’s a really good week.
So, that’s my situation at the moment. I try to keep things in perspective. It could be a ton worse. I’m not seriously, immediately ill, beyond my sleep issues (which probably are really taxing on my long-term health) and a few nagging little things. I’m not homeless. I’m not in prison. I’m not a drunk or a drug addict. I’m a few grand in debt (mostly medical bills that charity care has refused to cover, because the little bit of money I put in my checking account makes it look like I can suddenly cover $500-800 for farting in the emergency room, to less sympathetic eyes), but I have no college debt and no credit card debt whatsoever at 34 years of age (a minor miracle in this day and age, but I’ve also never been to college, nor have I had a single credit card in my life, either).
However, things also aren’t getting any better over here. I will eventually run out of things to sell, as well as money to buy other things to sell (I have an eye for collectables, yes, but you still need to spend money to make money there). My family isn’t getting any richer, any younger, or any healthier. Things keep getting more expensive by the day, and it seems like money goes out on something, and more of it than expected, every time I look. I still have no health insurance, and I’m still in the process of trying to find a free clinic in my area (a few leads, but nothing concrete yet). I don’t really have a plan for the future just yet, and let’s be honest, I’ve burnt up a lot of future already here. Do I try going to school, possibly pissing money I don’t have away on classes I might not make it to? Do I spend 2-3 years trying to make my case to the government? Do I just suck it up, throw my ethics out the window, and serially take and lose jobs for the rest of my life, being one of those people who’s always employed but never doing anything? I really don’t know.
If anyone who reads this has any insight into what I should do or how I should proceed, I’d love to hear from you. Be forewarned, I’ve heard a lot of the usual answers ad nauseum, and I’m working on doing what I’ve learned from some of them, while others have been useless. It frustrates me at times to keep hearing the same things that just plain don’t work, just as it frustrates the people telling me these things that it doesn’t work for me, but I’ll try to be gentle.
And, in the meantime, though I do not like asking for help this way, and have given some serious thought of late to how much karma I may or may not have burned by repeatedly asking (again, if you’ve got insights on this subject, please let me know; it’s something I am curious and concerned about), any cash you can send in my direction is a huge, huge help, and greatly appreciated. Thanks in advance for your help and support.
