I'm seriously ill. My endocrine and immune systems are pretty much nonexistent, so I live like the stereotypical 'bubble-girl' but with a whole lot less medical help: I stay at home, since going out can kill me unless I had access to a whole bunch of stuff that costs money that I don't have (like a good wheelchair, an oxygen tank, cooling systems because I can't regulate my body temperature, and clothes-- heck, I even lost most of my hair and don't even have a headwrap). And even then, the best I can manage is to be outside on a cool day. I have a restricted diet, and I can't come into contact with a lot of things, like chemicals or anything that's been in contact with them. That includes people.
And then, lately, I get told that my poverty and circumstances are my fault. Mine, like I want to be sick and poor. Mine, like I want to live like this. Who the hell wants to live like this? Would you?
Sometimes, I reach a saturation point.
Unlike the stereotype of the shiftless poor, the useless cripple, I want to work, I really want to work. I want to work more than anything. (So do most poor people, and so do most of the disabled, amazingly enough.)
But I can't. I'm too sick to work because I don't have access to the things that would improve my quality of life to the point that I could make so much money that, paradoxically, I wouldn't need the assistance!
I have cgi work waiting on me, and I'm too sick. I have serious cluster headaches almost every day. My mouth bleeds almost every day. I feel nauseous, my whole body is on fire, and I can barely move my fingers. My skin burns and rashes where it touches my bed. I can't even get up half the time when I want to, say, pee. I lie there and hold it until I can crawl to the bathroom, or maybe stumble, and hope my heart doesn't give out or that I faint.
But if I don't work, what happens? Well, since I don't get disability and am not eligible for it (since I'm a resident), if I don't work, I'll never get a wheelchair, or clothes, or an oxygen tank.
Or a life.
Now, even if I did summon up the ability to work, my paycheck would pay the penciller for the comic book I'm working on with my husband, because the only way for me to get steady employment is to create it myself and hope the royalties will pay me back.
So no wheelchair. Not for a while.
Even if I did have the chair, where would I go? This is a desert, dead-end town. The local tasty freeze? There's nothing here.
This all sounds very trite, I guess. I just haven't gone anywhere in about seven years. Seven years. Imagine never ever leaving your house for seven years? And I have a blue robe and a pair of jeans that are too big for me, and I'm allergic to the latter. I don't even have shoes.
Imagine not having shoes?
I can't wear most shoes, because I'm allergic to the chemicals in leather, and the rubber soles of flip flops, and so on. Forget about nice-looking shoes, either.
I guess what I'm trying to say is that, while I'm not going to kill myself (that would upset my household too much), I don't see any real point of being alive.
I can look forward to an indeterminate amount of time (because I could be dead tomorrow, or next year) lying in bed, doing nothing, wearing nothing, having nothing, some days eating nothing, being too sick to work, knowing that the only way that my circumstances will improve is if I can work.
But I can't.
But that's the only way.
But I can't.
But it's the only way.
But I can't.
And then I get told that, hey, if I'm hungry, why not 'do like the south americans do and eat roaches, they're a good source of protein'. Or, 'I hate poor people because they don't want to work, they want to leech'. Or, 'the disabled should be killed, they contribute nothing to society'.
What do I want? I want an RV. I want to travel around the country and see beautiful things before I die. I want clothes and a wheelchair so I can go out for a coffee with my husband on a cool morning. I want to be healthy enough to work so I can have something to look forward to each day instead of something to fail each day.
I want to wake up feelin hopeful instead of feeling defeated.
I want to be healthy.
And that's never going to happen.
And the thought of living the rest of my life like this... imagine, living the rest of your life like this...
I can't even find the right words. I don't want to live like this anymore, though I do want to live.
And there's no way out. And I literally do not know what to do about it.
No, I can't move back to Canada. I'm too sick to travel, unless I had an RV, which cost too much. No, I can't find a doctor, there are none in this area who can help me. I tried. They're part of why I'm so sick. No, I can't push through it. I'm terminally ill, there's no pushing through it. No, I can't put my chin up and figure it'll get better, it's been seven years and I can't do it anymore. No, praying doesn't help.
My husband is disabled, and there is no work here. He's doing his best to get food on our table and rent paid up, and the latter only happens because our landlord, this time, is cool enough to wait for us to pay him in chunks.
'Oh,' one might say, 'Tell politicians about it!' They know. They don't give a damn. Sick people aren't a sexy issue. 'Oh,' one might say, 'Go to a charity.' Which charity? We've looked. Even the churches and food banks here give you a hard time.
And charity's only a temporary solution anyway. I have job skills. So does my husband. We're still unemployable in a town whose idea of good-paying employment is working part time at the local taco bell... not that I wouldn't work there if I was healthy, because any hard work is admirable.
I'm usually good enough about hiding how depressed and hopeless this all makes me feel that even my husband can't tell unless I tell him. I don't like to be a burden. I don't like to be emo, and I don't ike to indulge in frequent bouts of self-pity, because it never accomplishes anything except to leave me tired. I'm just even more tired of shutting up.
So even this rant makes me uncomfortable. My husband talks about this kind of thing on here, now and then, and I back him up if trolls come calling, but this is MY first post about it.
And now I've run out of things to say, so this post ends here.
Edit: Well, almost here.
We're the people that are talked about when 'the poor' or 'the disabled' are mentioned. I know it sounds obvious, but it's easy to think of the cause and not much deeper than some feel-good ideal. I know Bush and company don't give a damn, but please, liberal politicians who are not reading this blog, think of living like this for the rest of your life.
Seriously.
If it perturbs you, please change domestic policy towards the poor and the disabled.