Hello there, dear reader. I've missed you. Quite a lot. There are reasons, and not even one excuse.
I'm officially disabled. It's genetic, so this happened before I was born. It's progressive, which means for decades, I thought I was "normal" (whatever that is). I worked and played hard, living life as best I could. I had limits that kept me from doing many things I'd dreamed of doing, and as time passes, I'm able to do much less.
Sadly, I have to fight for a decent life. Like almost every other non-privileged disabled person in the [allegedly] United States, in fact. I am not special. I don't claim to be. For every time I've had to find a work-around for basic survival, others have had less opportunity. Nonetheless, I've lost my home (greed and law are a bad combination) and almost everything else as a direct result of my disability.
My husband is disabled, too. We struggle with a discompassionate system of national insurance (I assure you, it isn't "care", as profit is their sole motivation), Medicaid (thin to nothing "charity"), a backup of "glory hole" charities (the "Look at that! I did a nice thing. Thank me." types, in large part), native wit, and sheer, desperate, and often cockeyed adaptive strategies. It's never easy. Because we're married and have no children, we get less help, instead of more. That's the law.
Add to the illness, stress. Thieves targeting our neighborhood... the poor, the disabled, the elderly. They should be ashamed, but aren't. Ditto the community, really. We rarely see any law enforcement in the area. That's mostly for evictions, sometimes for drugs, almost always brief incursions. No real investigations. (One call to a state police detective got me the advice, "We're spread too thin. These type of people have no respect for anyone, even themselves. If you have big dogs, turn them loose. If you have weapons, be prepared to use them to stop intruders. I say 'stop', not 'threaten'... it doesn't work." When I only said, "Yes, sir.", the man was speechless before finally laughing out loud. "Yes, ma'am. I like you. If everyone took orders this well, we'd have no problems like this. Good luck!" The thieves came, encountered big dogs and barriers ready, and left. They hit our neighbors instead.)
Medically, we're going backward, thanks to the counterintuitive thinking of the able folks. From a wide array of specialists, in my case, to hoping to find a primary care physician who is willing to learn something the American Medical Association promotes as useless information ("If you hear hoofbeats, expect to see horses, not zebras."?). Why? Well, there's less profit in genetics than in pharmaceuticals, and I, among the many, cannot use those fancy designer versions of medicines and remedies in use for thousands of years. It's against the law. Why? Again, money.
Public outcry is a lovely thing. It can make or break lives, and it does so regularly. Truth in those outcries is hard to find most of the time. But ask a disabled person how they make it, and you'll get some version of my story.
I got so exhausted by certain "social media" that I shut it down. More stress? Make less. And so I did. I have.
Today I sit here with my nose virtually mashed against a computer screen, trying to see what I'm typing. I have an appointment with a neurologist that may offer answers as to why. Most of those possible answers are rooted in the genetic illness, #EhlersDanlosSyndrome. It's a faulty collagen issue, incurable, that affects the entire body in wildly varying ways. (I'm reasonably sure I watched my mother and sister die as the result of complications from being undiagnosed/misdiagnosed for the same thing.) I have multiple body-bracing in use; the assortment can change within moments, let alone over days or weeks. My sole pain relief at present is a good chiropractor and some skilled massage therapists (update 4/9/2023: medical massage is no longer accessible, though our governor is trying to legalize medical marijuana... where there is corporate profit... which doesn't do much for me). It's something. The pain is reputedly worse than that of cancer, so I'll take what I can get, sans "poison" pills (no commercial analgesics work for me).
At any rate, I have blurry vision, mostly in one eye, and a host of other complications. I'm using a cell phone for internet access, almost exclusively, due to economic stress. It's a conflict, hah.
I've put in my two cents for retraining as a voiceover/voice acting artist (update 4/9/2023: it was discovered that I "have multiple and complex barriers to employment"... I already knew that... case dropped). I used to write books and do visual art as a hobby. Surely there is some way I can do better. I'm trying. That's all there is.
So if you miss me, too, know I'm still here, still plugging onward, and hoping. Keep your own hopes alive. It's worth the struggle.
Thanks for listening. Have a great week. I look forward to getting back in the swing of things if/when the health issues resolve. I'll see you there!
https://www.sumday.com/gift/stable/uWgMDo8iT0_etTvkjSsN6A
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