Mummy's Curse and making a difference in (other's) quality of life

I am starting to get this weird, Stephen King or Mummy’s Curse feeling about the visit to the hospital yesterday. While, “Yes, you will be in pain with these but you won’t die” sounded pretty great yesterday when I was first told, it was because I thought how many nights I lay there twitching in bed wondering if it was my last. Only today, two straight weeks after trying to “come back from the edge” and have a life without massive amount of erratics, and still getting them hitting me within 90 minutes of waking up, after another two hours of pain and erratics this morning I was wondering if the “good news” was more like a curse? Because after getting hit hour after hour, and day after day by the pain of these erratic beats/delayed, massive beats, P.A.T.s etc, I am starting to wonder, looking ahead, how long I can take most of my consciousness being in these multi-pain bursts per minute? So now it sounds more like the curse of “Yes, you WILL be in PAIN, but you will not DIE (no matter how much you beg for it! Bwhahahah!)!”

Did that answer your question about my inner Pollyanna? I have no inner Pollyanna, I have an inner Oscar Wilde where every clever or bright thing I do is actually attacking powerful people, and though I am worried, I cannot stop the self destructive acts which will reduce me to licking wallpaper in attempts to kill myself from mold on the brain.

I am actually cogitating on “How to help someone with a disability?” because of my other motto: “Giving a flying fuck just isn’t for Xmas.” And while thanks to living in some weird grey zone where I am poor enough to get subsidized YMCA/YWCA membership, I still have, though Linda, the ability to pay the $10 a month that people who can’t afford to pay anything are required to pay. The same is true about my home care. For which I am very grateful. But a lot of people don’t have these options (like they don’t have the ability to sell/borrow much of their partner’s future income to have the money to go to Japan – side note, this weeks manga sale has reached $500, meaning I made my goal of raising $1,500 for my side of the trip costs. But thank you Linda for meeting the ACTUAL cost).

Thanks to BadgerBag, I was put on to the charity Modest Needs which, at least last year, through a grant, if you donated a set amount a month toward someone’s modest need, they would match you dollar for dollar. Here is the need highlighted by Badgerbag, which I can identify with; a person with Cerebral Palsy who needs a washer dryer because they have to try and carry/bike part of the laundry they have a distance, making laundry a never finished task. Today I finally (when last week’s missing worker actually appeared) got the laundry done! So yeah, something like that can make a HUGE difference.

For me, it is wheelchairs! There are so many cheap rigid A4 wheelchairs out there (we have run into several for sale for $400). And I am thinking here of the person who may not be a full time user, who may only use it once or twice a week. But you know, it is hard enough to have a lot of medical conditions and then have NO CHOICE on a crap day. And when there are these wheelchairs all over supply stores just gathering dust (no they aren’t flashy but they are “lightweight” and are rigid meaning the energy you put in, you get out instead of the folding which absorb a lot of the push), I have to ask why? I don’t have the info on the scooter situation or electric wheelchair but I hope people are passing along what they can. I have my electric chair because the foot-plate is broken and some other part chipped (like I care) so it couldn't be "donated" official to a charity. And maybe I should pass it on to someone who needs it more but knowing AND using it once a week or more on the days I can not, do not have the strength to use the manual gives me assurance that I am not helpless. That I can get from my bed to the computer and back, a little dignity in a life where I talk about how much I shit the day before (by the way, a nix on any future colonoscopy bags as I was told that in my condition I wouldn’t recover from the operation...as in DIE – but there are OTHER alternatives).

So what else? I am thinking that a 90 or even 60 minute gift of a cleaning service once a week for someone with CFS/ME, fibro or other conditions could make a BIG difference. Because, in two 45 minute visits a week getting the dishes done and the bathroom washed, that is a) a relief of taking that off the “duty list”, b) not having to feel like “a bad person” when you have days when you can’t do them and they stack up and c) spending your energy doing stuff like, going outside or calling a friend, or whatever makes you happy.

Linda agrees with the cleaning service but also thinks that getting someone an emergency taxi account with a prepayed amount would be a great gift of both security and opportunity. I was able to CHOOSE to go to the hospital yesterday because Linda and the city of Victoria have such an account for me (I couldn’t afford to pay the $85 to take an ambulance so paid $10 on account to take the taxi – I must have looked like crap because the driver absolutely refused to take the $1 tip, and put it back in my bag and told me to take care of myself, and I was too weak at that point to protest). So, going to an emergency test, a late booking doctor’s visit, a trip to the emergency room, heck even a trip to the mall when you haven’t been out in a week and are too weak to get to the bus stop but can roll on flat mall floors.

We also think that there must be a LOT of people out there who need or could use a shower bench as a safety precaution if nothing else, and they don’t have the $100-270 that medical companies demand. Yet in local papers, I regularly see benches going from $20-40. I would try to raise money to buy one if I could figure out some way to get it to someone who needed or could use it (the housebound thing tends to cut down on the local gossip). Because having security, or some sort of options to me is really important in giving someone a sense of security, of dignity and safety. Other things I can think of are high quality headphones for people who use them for Dragon 9 or phone calls (I do, but I have a rocking pair, but I know other people who could use some, and headphones eventually go on the fritz). Linda says big button phones for calls (as she is delayed in getting us one, thus it is on her mind).

If you are able bodied and have no money, how about volunteering to move some stuff. Just with myself, there are a lot of projects from selling my manga to selling other books which REQUIRE the help of an able bodied person to help me move, or select or sort books. There are parts of the apartment I want to arrange, to rearrange, to make more efficient (and 'asking' Linda to do that after coming home late from work - not really 'sharing' that chore). I am having some OT’s coming to tell me how I can make my workspace more “disability friendly” Great, except they are probably like the disability tech people who sent me a computer and when I asked “How am I going to set it up and hook up the cords and crap, it is not like I can lift it much less crawl around on the ground hooking up stuff and then popping back up to see if it works?” Nope, that isn’t their department.

Well, I don’t know how we could get these people together but surely there must be a few people who wouldn’t mind changing a light bulb or fixing a shower rod or moving some boxes or helping someone sort out their summer clothes from their winter clothes? The question is a) What other ideas are out there for making a difference, what are the needs I am missing? And b) How do we get these two groups together? Quite honestly giving to a charity is good, but unless it is like the one above “modest needs”, for me, it isn’t enough. Because, if you are like me, you KNOW a bunch of people on the net who could use help, up to and including the money to ensure they can STAY on the net and have a voice outside of their own house, and while I am sure the charity/charities do good work, I don’t see them swooping in to help my friends, the people I know, even if only online with these kind of real needs.

Anyway, I guess that means that I am challenging everyone to brainstorm, including me, on way to make a difference (or let us know what would make a difference to you) and then how I can find these people to help in the ways I CAN help. For example, the library has been closed by MANAGEMENT (boo! Hiss!) in my town for a month now. Well, the library offered a service for shut-ins so staff would select “books of interest” and have them delivered to your door. For the poor and those of limited income, the free DVD borrowing and the book borrowing meant having a higher standard of quality of life. That has been taken away and while middle class or upper middle class can buy some thrillers to fill up the time and toss them, when you are living from disability check to check, you can’t. So how do I, with not only my collection of rare books but at least a few dozen if not a few hundred of a variety of genre fiction (which I CAN donate to someone who WANTS/NEEDS to read them) get this material to those shut ins who have read and re-read the books from their last delivery? I don’t know: obviously I can’t run an alternate library out of my apartment (I did think of that by the way), but I want to find a way which means I WILL find a way. Anyway, can anyone help me out? Because if you can at least brain storm ideas, then maybe, I can pass them on or put them together as an article and shop that around to get printed and maybe, life will get a bit better for some?

I’m not saving a continent or ending hunger but hey, why can’t housebound people have a mystery to read? And why can’t a person help a neighbor with a disability to move things if they want them moved? Or have the security of a bench in the shower if you feel dizzy, or weak, or a leg gives way. And yeah, maybe some or a lot of people will say, “I don’t need help.” But there is nothing worse than needing that help, wanting it, and no one giving a damn.