Definitely not. Having chronic, non-terminal illness sucks enough, I wouldn't want to be dying on top of it. And my few experiences of having things become severe enough that dying could be a possibility, are such that I find it hard to believe people actually want to experience that.
Seriously, even if it got sympathy (and my experience is that any "sympathy" I do get is usually pity I don't want, and that most people just expect you to either get better or die and have no concept in their heads of living long-term with chronic illness so they just get uncomfortable around the realities of it and act out that discomfort in a whole large variety of unpleasant ways), please explain to me how being delirious and in severe pain is any state that attention makes up for. Because my experiences of it are that in between passing out a lot and waking up to being totally unaware of who I am or who my closest friends in the world are, but being aware of a whole lot of pain and weird demented (and utterly, utterly boring, as in mind-numbingly repetitive even to an autistic person) hallucinations until I pass out again, and being too weak to reach my communication device in my few lucid moments, sympathy wouldn't make up for that even if I were the type to want it (and if I got it, I wouldn't even understand it at the time). And that's what one of my worst prolonged medical crises felt like (prolonged as in, if it had killed me it would have been over time, rather than just suddenly not breathing like an asthma crisis can be), I imagine that a terminal illness would be far more unpleasant.
People I know have died of terminal diseases. And it's not cool or fun. Often it results in having all your "friends" desert you in panic (especially if it's AIDS, but even for less stigmatized conditions). Most doctors don't have a clue how to do pain control either, even though the science is out there. (Often you end up with your pain meds ramped up past the point where they become toxic and cause more pain, whereas the actual thing to do is have them back off on them a bit and use other approaches when they start doing that. That's the reality of a lot of the "untreatable pain" you hear about, a lot of it could be treated if doctors were aware of the paradoxical effects of too many of certain kinds of pain meds.) Often the treatments -- such as the drugs that keep AIDS at least partially in check, and chemotherapy -- are hard on the body and can produce things like artificial dementias and extreme irritability. It's just... a horrible and unpleasant experience, both for the person going through it and the people around them.
Which is why you'll get humor like this blog, because the only possible way to deal with something like this sometimes is to laugh at it. Don't mistake that for it being fun. It's just the only way to deal with it. And often people dealing with these things will minimize them or laugh at them not just to deal with it themselves, but to avoid getting unsolicited pity. (Which is why you won't often hear me describe the events in paragraph two of this post, and if you do it'll be in abbreviated form with a lot of humor thrown in. I've learned not to talk about things like that in "mixed company", i.e. around both those who get it and those who don't.)
Yes, there are conditions where it really isn't that unpleasant the whole time, but usually after a certain point it does get that way. (If you're very lucky it doesn't, not even at the end.)
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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
23 Jul 2008, 9:55 pm
