Health! We Need Somebody

TJ got a cane today.

Yes, a cane.  She’s having a fibromyalgia flare-up and is gonna need the cane to walk around from time to time.  She’s twenty-seven.  And that hurts.

It’s just painful to think about.  It’s been maybe two years since TJ self-diagnosed for Ehlers-Danlos Syndrome (EDS), and she’s having a harder time.  She’s mentally in a better place, and she tackles every new challenge that comes her way.  And she’s more able to ask for help (I’m trying hard to listen better).

But physically, it getting harder for her.  Without her getting disability, we’re not really even treading water – keeping everything going, but hardly making a dent on her condition.

Tonight I read Dan Savage’s article here, and I couldn’t help think about TJ’s condition.  The man in this article has it much worse than she, hopefully worse than she’ll ever have.  She’s free to walk, talk, surf the net, do light chores, drive, and so on.  This man spends his day not moving, so as to not strain his breathing, until it’s time to fall asleep.  So we’re pretty blessed.

I can only think of how degrading it must be to be completely helpless and have to rely on begging to get by.  You can call it charity, but it amounts to standing out on the digital corner with a cup.  I don’t want that for TJ – I’d rather she receive government assistance to help stabilize her position.  Hell, I’d rather we had the help back then, when we were still figuring out what exactly EDS was.

The quicker we receive help, the  easier it will be for TJ to become a productive member of society again.  She’s an ambitious woman: accepting assistance and defeat isn’t natural for her.  But she’s come to accept that she needs disability.  I hope we don’t have to prop her up like a sideshow to pay for her medical expenses.

If I seem a little bitter… I guess I am.  I don’t want this to happen to anyone.  I don’t want my wife’s health care to hinge on whether or not some celebrity endorses her.  I still believe universal health care – a government option for companies to compete with, at the very least – is the way to go.  But it’s not going to happen anytime soon.

Sorry to strike such a bummer note.  It’s been hard seeing TJ go down hill lately.  It’ll likely pass soon, and she’ll return to her normal level of pain and difficulty.  Stay tuned for something more positive.



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