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4:22pm November 22, 2013

I feel like my life is luxurious sometimes.

I know most people would not find my life luxurious.

I live just barely above the poverty line, and I think my parents live under it, so I can’t go to them for money the way some people can.  I have severe chronic pain.  My health is bad enough that I’m in the hospital a lot (by most people’s standards, anyway – I know people who are in way more than I am).  I’m not able to get out of bed very much.  By most people’s standards there is no luxury here.

But I have enough money that I can sometimes buy things just because I want to buy them.

And I have some really nice belongings, even though many of them are primarily assistive technology.

And I have a couple friends I’m really close to, who are real friends, not people who act like friends for any of a number of screwed-up reasons.

And ever since I got the feeding tube and started on Mestinon (a medication that makes my muscles stronger), my health has improved both in terms of nutrition and in terms of stamina (both specific-muscle stamina, and overall stamina).  Even though it’s nowhere near what most people would call healthy, it’s more than I had in the past.

And I’m reasonably happy.

And I’m not in an institution.

And sometimes I wonder what I did to deserve these good things.

But I also know that most people in my country would not consider living the way I do luxurious at all.  And that’s important to point out, because if I just said “my life is luxurious” with no qualifies, people could get the wrong idea. Many people do get the wrong idea, already, and think that disabled people are secretly living these amazing lives because we’re too lazy to work or something.  And that’s not true.  At all.  And my life is not luxurious.

It’s only luxurious in the context of where I’ve been, in the past.

Because in the past I’ve had to rely on charity for food and other necessities, and still didn’t always have what I needed.  And in the past I’ve been so unhealthy that we weren’t sure I’d live.  And in the past I’ve lived at half the poverty line or less.  And in the past I had people in my life who pretended to be friends but weren’t, but no real friends.  And in the past I was in a lot of horrible, abusive situations.  And in the past I had to live with so few services that it was a struggle to get what I needed, even the basics.

It’s probably a bad thing that I consider how I live now to feel luxurious.  That doesn’t say something about where I am now. It says something about where I’ve been.  That’s a very important thing to keep in mind, because saying things like this can be so easily misinterpreted – “oh yeah those people on welfare are really living large”… no chance, not in this lifetime.

But does anyone else ever feel this way?  Where you don’t have what most people in your society would consider even an average lifestyle in many ways, and yet you feel like you have so much more than you used to, that it can feel like your life is sort of luxurious?

I also feel like this won’t last.  In fact, the way the world is going, I know it won’t last.  Either I’ll die, or else I’ll be thrown back into horrible situations.  I feel like I have to appreciate this now, because it will be gone eventually.  I also feel like I shouldn’t get too used to it, because that will interfere with being able to adjust when things get worse again.  And I don’t think these are just feelings I have because I’ve been in precarious situations.  I think they’re accurate judgements of how the world works right now.