Yeah, so as you might imagine I spent last night thoughtfully. Damn near sleeplessly, in fact. I thought about many things last night. You could say my life passed before my eyes, and the story didn’t exactly fill me with joy or lull me to sleep.
I’ve been injured before. Lost half of a perfectly good leg, wrecked the knee of the other one. Got a little chunk of finger cut off. I’ve been hit in the head hard enough to give me headaches for weeks. Had a forearm slashed open in a dispute that didn’t go well. Smashed a wrist so bad the surgeon told me I’d never turn it again. Broke another knee, many years later when life was much more placid.
I’m not trying to come across as some sort of action hero. My friends know I’m definitely not that. I’m just saying I’m familiar with pain. I don’t like it, but it doesn’t particularly frighten me. If it doesn’t kill you, you usually heal. Eventually. Even when you don’t, you can learn to live with it. That’s my experience with pain.
The two prospects that have always frightened me are losing my hands and going blind. I could find some joy in life if I was stuck in a wheelchair, as long as I had my hands and my eyes.
When my eyesight gradually got worse over the past few years, I just figured it was part of getting older. My eyesight has always been very bad, since an illness I had when I was five. Glasses corrected it, and that’s just the way things have always been. But the sight in my right eye has recently gone kind of milky and vague, and the eye doctor’s words yesterday only told me something I should have paid attention to a long time ago.
I’m really trying not to freak out about this. I saw a Wally-World optometrist, and she’s probably not a world-renowned expert on glaucoma. (On the other hand, says Practical Joel, she’s probably seen one hell of a lot of eyes. And didn’t you hate it when people looked down on your lack of a degree, when your expertise only came from the fact that you could do it? I’ve got an eye for bullshit, and she seemed quite competent.) We’re not talking about something that’s going to happen later today: This has been going on for decades, and I may well have several or even many years left to my left eye even if all goes badly. (On the other hand, says Frightened Joel, she didn’t seem to think things could go any way but badly. This condition was not caught early. For which I have no one to blame but myself.)
Yeah, really trying not to freak out. Part of me spent the night composing my death poem, because if I really lose my eyes I don’t think I can live. Part of me channeled Buck Owens: “Good buddy you may get me/But brother let me tell you that it’s gonna be after the fight.”
Yeah, and haven’t I seen so many people who claimed to be determined to “fight” some deadly illness, when they might have been better off finding serenity? Most of them died anyway. The illness didn’t agree to “fight” back, it just killed them. Sometimes the “cure” killed them.
Sorry, I ramble. Long night.
Before laying down last night I stared at an incredibly tiny bottle of eye drops that cost me sixty bucks, which I had to borrow from a friend because I’m broke. And that leads me to the one scenario I knew my “broke” lifestyle would not be able to cope with. I can stick to my philosophical guns, refuse treatment I can’t afford, and quietly go blind. Or I can cut the bullshit and apply for state disability. In the cold morning light, I see I’m going to do that second thing. Once I learn how and overcome my gag reflex.
But first I’m going to try to raise some money in a more honest way. I have an idea, which I hope to discuss with friends today. I have two and only two possessions that are worth a little money. One of them is precious to me, but I’m no longer physically worthy of it. I’m thinking of raffling it off, but need to learn about legalities and plan details. Don’t know how realistic that plan is, but I’m going to look into it.
More later. Sorry if I’m not a lot of fun this morning.
Whatever you decided, a great many of us will stand by you. Your life belongs to you. Sending as much positive energy as I can… Let us know how we can help.
Suckage, for sure. I read your original post about this, and I’ve been wondering whether I should say what I think…but that resolved itself the way it usually does. So here goes: don’t necessarily believe the doc.
I know you said she seemed competent. And she may very well be. But that doesn’t mean she’s right, or that she would even be able to tell you what sort of reliability her predictions have.
Two minor offerings in support:
(1) A few years ago I had lots of issues relating to spinal-cord damage, “caused” by myelitis. It took months to find a doc willing to believe me about what was going on…up till then I’d been told I didn’t really have all those symptoms so it must have been anxiety (never mind that that would have been a strange thing to suddenly develop in a 40-year-old with no history or feelings of anxiety, or that my symptoms–including intermittently very low heart rate–were somewhat inconsistent with the diagnosis). Well…eventually an MRI of the cervical spine showed lots of inflammation and suddenly they weren’t sure I ought to be outside an ICU (this was months after my issues began). And the docs started pushing $2K/month prescription drugs on me, ’cause they said it was probably MS. Symptoms went away w/in a month after I quit eating/drinking Aspartame, though. And it’s been years. So…at no point was general-doc-knowledge useful to me. They were wrong at nearly every turn, and the consequences to me of believing them were not good. I’m very glad I stopped believing what they said had any basis in fact & started treating it as the equivalent of weak groupthink.
(2) A dentist told me my gums were in bad shape and I needed immediate treatment ’cause I’d lose my teeth soon. My gums seemed fine to me, and 12 years later I still have all my teeth. Never even had a toothache since. I still don’t know what she was talking about with the gums. AFAIK they’ve always been fine.
(3) I used to write software for medical people and can personally testify that they (as a group) are not trained to understand statistics. Also, it’s amazing how little data on patient outcomes is actually collected–never mind analyzed. The “patient privacy” thing is a really big hurdle (though not in a very useful way for protecting actual privacy) and it’s hard to get even one-time permission for a study applying to the patients of a single doctor. After being on the inside of the medical-data world for a while (leading a team building a telemedicine & data-transfer app in Alaska) my eventual conclusion was that nobody knows what the hell’s going to happen as the result of damn near anything.
HTH. At least a little.
you may hate this, but have you considered putting a donations button via paypal on the right side of your blog at the top. It seems to work quite well for some others who are in a serious jam.
Beyond suckage, indeed, with ironies to spare. Even for someone already hardened to the idea that the world is not “fair”, an initial reaction of “you have got to be f#ckin’ kidding me” does not seem out of line.
Please do keep us up on how we might be able to help. Now may be a good time for creativity.
Set up a Paypal tip jar. I’ll link to it, and I won’t be the only one.
I know that I don’t know you, and you don’t know me and all that. But in a way I do know you, and you know me. Not sure what a tip jar would do, but if it delays going softly (or loudly) into that good night, then this is a win.
Email me. borepatch at gmail.
Just an observation.
The “air puff” test for elevated IOP is rather “twentieth century” technology. “Modern” testing involves a more direct, totally painless method that yields considerably more accurate results. The science has now progressed to the point where the doctors realize they must allow for corneal thickness when analyzing the IOP numbers.
This all by way of saying you should make an effort to get the most up-to-date care you can find. And no, I’m not an eye doc . . . just a “glaucoma suspect” in treatment.
Good luck, Sir.
Dragon software will allow you to interact with the computer without sight.
Set up that paypal button.
Suckage doesn’t begin to describe what I know you are going through. I will not suffer you through another round of sympathy except to say that I’m pulling for you. Oh, and one other thing…
Set up the PayPal link!
Get thee to an ophthamologist, as soon as you can. Please.
My uncle was a college librarian, once. He ignored his fading eyesight, and fooled himself into thinking it would get better. 9 eye surgeries (and a lifetime’s savings later) he lives in my house. It was simply too dangerous for him to live on his own.
Once a speed reader, he can laboriously read a few pages an hour with a strong light and a large magnifier, if the book is hard-bound and with large print. He cannot watch TV, movies or enjoy a sunset. He can tell the difference between my son and I if we’re within arm’s reach.
Sight is important. Save as much as you can.
Joel, I arrived here via Claire Wolfs page, please take the time to check out this info, if its trusted by Linus Pauling, its good enough for me. Oh, it is very inexpensive, that $60 would have gotten a years supply of pure ascorbic acid. Best of luck.http://www.doctoryourself.com/glaucoma.html
Joel, please follow up on all the posts about getting to a really, really good opthomologist. I don’t doubt that the WalMart lady is competent, but what she knows may not be all there is to know. Losing your sight is not a given. Believe all of us who have told you that. Please stifle your hermit needs right now long enough to get to the very best, maybe university-based, professional. Find an organization or a group that can help you And once your sight is stabilized, wear the very best UVA and UVB polarized protective wraparound sunglasses, not the $1.98 specials. Take care of you.