About why doctor’s offices should be the first places to be accessible, and aren’t.
About why Egypt is its own country, [Even though I’m a freaking two-year old yelling at the tv about attacks on the press: “Hey! Hey! They’re trying to write/report about this! Hands OFF!”]
While we need to keep vigilant watch over what goes on there…it’s going to go our way, or not…we can strongly condemn, recommend, do behind the scenes diplomacy etc. At this stage: Egyptians are the ones to change Egypt, no?
About things I can’t be angry about “In public”
about how a disabled relative just lost their job, and is struggling to respect themselves as a person without that almighty conferrer of worth…I now know five people whose jobs were ‘lost’ at least in part, due to the downturn mixed with medical issues.
I can’t. I’m trying to move home without really knowing the specific ‘place’ I’ll be in…The roomate could be homeless at the end of March, and I hate feeling hugely guilty about that, even though I’m not the job they lost, or the private disability insurer that is dragging it’s f ing feet…
My blood pressure is way, way, way too high, so tomorrow I’m starting meds…
I want to yell and scream and throw things, because that’s the way I normally displace stress…[The three great things my father taught me: How to yell, play poker, and cuss elegantly….] but it would only make this environment tougher to live in.
One of the few skills remaining to me is to analyse info that I get from the net, and C span and AP and TV, and sort out the crap and blog it from time to time…I’m irritated that my head is way too full of personal biz to do that right now. Just one more brick on the “I feel useless,” stack.
Six hundred dollars…after paying 535.00 for health insurance and about 300 towards the rent, that’s all the roommate and former PCA has left…she’s asked three docs to fax info to a long-term disability company…it was a third party policy offered by her former employer…the disability company has denied the claim…she’s lawyering up (towards the third party disability company, )and will be chatting with one relative this week…
In early September she had a job…and now…she has nothing. The suddenness of this…is really jolt to the gut terrifying…we’re experiencing, for different reasons,(the worsening of our disabilities…) what people affected directly by the economic downturn went through, are going through…
I feel like she, and to a lesser extent myself…are being punished. Really. Punished for trying to do what the rest of you do. Fend for ourselves.
See, it started out as a project of mine. I have this bad habit. I’m cheerfully pushy with other disabled people when I meet them if I think they can do better than they’re doing…Her, and one other friend, were people I thought I could help navigate through the world of working. (this other friend isn’t speaking to me now…doesn’t say much for my track record, does it…)
My friend and former PCA figured out how to work at places with phones and benefits, in part because I showed her how to do it, ’cause I was doing it at that time.
And I worked out of college because I have an old old conversation with a family member relentlessly running through my head…back from my teenage years:
I was thanking the familymember for helping me out with something, I don’t remember what…and they said, “Oh don’t ascribe any noble motives to this. I want you out of the house and functioning by the time you’re 18.” There was nothing evil meant here. Adults worry even about able young people, and with good cause, that if their relations don’t get self sufficient…they’ll still be there when they’re unemployed, married, and 36 years old.
The way my brain ‘translated,’ that over the years was, “You’ve got handle it yourself. You have to stay ‘out of the house and functioning.’ That’s what ‘they’ want no matter how hard it gets…this one conversation somehow became a line between success and failure as an individual. And, for a good while I got a great deal of benefit from trying to hoe the exact same row as the able bodied. But I was never able bodied, and looking back, should never have tried to spend decades acting as if I was until 2004…especially because I am the most lousy about money person you will ever know. Intelligent, funny, charismatic…and hideously unable to keep money or food from seriously screwing with my life. I am stupid about money. My roommate is also less than brilliant about money.
And that ‘act like the able,’ way of doing was what I tried to impart to the roommate.
And I’m wondering now if I did my roommate a terrible disservice. Because…
She worked for three months and two months, and a year or so and nine months and eighteen months, and then got the job she would have for ten years.
I may have helped her figure out how to handle working, after a long troubled time in her life…but she was the one who cheerfully and methodically learned the job, and became good, better and then the bloody best at it. She became an informal source for answers for years for bosses, trainers, directors, accountants and even the occasional VP. She became a part-time trainer herself…won awards, was made much of….
But during much of that time, preexisting and new impairments dogged her…they worsened and worsened slowly and new stuff showed up and interacted badly with the existing stuff, and then *life threatening stuff* showed up…FMLA was a job saver for her…after years of being fine with any reasonable accommodation….they wouldn’t move her desk close to the fax because “that’s where the temps sit.” Suddenly this May she was as “not a team player,” WTF? W.T.FFFFFFF” By September, standing up from her desk and walking on crutches to the fax made her grit her teeth and cry….
She can barely stand unassisted. She cannot walk unassisted. At night she cries due to pain, that even restricted medications take two hours to shut down enough so she can sleep. I hear it from the other room and just get sad. And because they take that long, she’s really too medicated to think clearly about what she has to do next until about 2:00 in the afternoon. No driving on this stuff. Hell no.
And by 1/1/2011, she may have no place to live.
And, at that same moment I may have to move back east (not a bad thing at all.), and temporarily move in with my parents (a living arrangement that, putting it carefully, will be fraught with difficulty and complications.) I am on a waiting list for five accessible buildings, and the wait is *not* the three to five years that is the norm, but about eighteen months at the most, from what I understand.
I was trying to hold out here till March, till the end of the lease…and there is some great help coming from my family for me…but the uncertainty of this makes me feel like I’m sitting here with my head in a vise, and I cannot even really imagine what *she* is feeling.
Just to set the record straight, family, friends, enemies, random strangers reading this blog,
I’d rather work if I could.
Some of you have mentioned privately that I should get my impairments under control, as if I had that capability for all six at any given time.
I’ve been homebound for nearly a year now, and it is driving me goofy.
I’m one of those obnoxious liberals, and yet…
I’d Rather. Work. And. Pay. Taxes.
I cannot do so anymore.
I’ll have some hope for amelioration down the line, but it *isn’t* a matter of conscious choice.
I know they were trying to be helpful and constructive…
But I’m sorry it drives me nuts.
So yesterday I call the family, and those friends I know will call me back by phone….
To see if they still had jobs:
One sister in law will be laid off by May. (I hope she decides to move somewhere warmer)
Potential layoffs and pay cuts face the Las Vegas contingent.
Involuntary furlough days in Columbus Ohio.
And a friend in Loveland hasn’t yet let me know.
An odd (but really good ) piece of news:
Looks like a family member who has been basically reclusive for the last four and a half years now leaves the house twice a week to play bridge at the library…no medical intervention no medicine…
WT …Efffing F…?! I mean it’s great but where did the Impulse to Reconnect With The World come from?
Inquiring minds would like to know, but I don’t think an answer will be forthcoming.
I even went so far as to inquire of Deity, but as is so often the case, Deity remains silent on this issue.
And I am so sad about the state of things between myself and my otherwise wonderful family.
We make each other physically ill when the subject of politics is broached.
(I even have some really politically incorrect items, small stuff, that I agree with them about, when I try to set the tone, but it’s not enough.)
It never used to be like that, and I have voted differently than they for at least the last fifteen years.
I just can’t be a cheerleader for the folk that would vote in people that would eviscerate:
Other Welfare sorts of things.
Simply on principle, if they got the chance.
Not just reform it. Remove it.
(It must be quite easy to vote to remove something on principle that you are absolutely certain you yourself will never need.)
Maybe its easier for them to do it since I don’t live in Ohio anymore…
They *care* about me. They help me out… Absolutely they worry for me. I have no doubt of that.
They haven’t been direct eyewitnesses to my try-fail-try-fail work cycle of the last decade.
Never been present when a roomate had to clean up after I got sick.
Never been present when the mental health necessitated inpatient care all on it’s own…and my mobility was forcibly taken away…
And more and more ‘able bodied’ people:
Are living in tents.
Never mind. Just never mind. I’ll not win that debate with them.
Makes me want to break into a chorus of “I’d like to teach the world to sing.”
“This was the single dumbest thing, in this economy. ” (Can’t construct a complete sentence and they’re calling me dumb…Sigh.)
“How stupid.” Now you won’t get anything and I suppose that if you are on the street in six months then you’ll expect someone to bail you out.”
And from someone I’d thought ‘dissapeared’ long ago.
“You made me suffer and it pleases me to see you do the same.”
I flove the ‘delete’ key. I really do