Saturday, January 30, 2010

Felt like a slap, to me. What do you think?

I just want to lay this all out. I’m not sure I heard right. I must have misunderstood, don’t you think?

I drove over two hours round trip for an appointment at the social service office in my new county. Although I am disabled with ME/CFS and Fibromyalgia, there was no way the appointment could be held at a more accessible location. The appointment required me to confirm various personal statistics, including the fact of my disability, all paperwork on which I’d been assured had already been forwarded from my old county to my new county.

I brought a huge file of papers including my copies of those confirming my disability.

The worker asked me when I had last worked and what my job title had been.

I answered that I had been working as a grant writer but due to my disabling chronic illness I was able to work less and less until, in June 2009, I could work no more.

She asked me if I could perhaps write grants for a local agency called Disabled Sports.

I reiterated that I could no longer write grants myself, but offered to refer them to my colleagues at the consulting firm for which I formerly worked.

She bristled, stating proudly that Disabled Sports was 100% volunteer run, and would never pay someone to write grants.

Okay, first spot check: she was asking me, although I am too disabled to work as a grant writer to support myself and my children, would I write grants for free? That seems to me to be what she was asking me.

Well, we got to the end of the appointment somehow: the appointment which the paperwork she mailed me had said would take one hour, and which took closer to three. Now was her final question: did I have any questions?

Yes, I would like to know, I told her, if there were any local agencies to assist disabled people with basic necessities. I cited as an example of such an agency, the Center for Independent Living in the county from which I had just come. They help disabled clients find housing, food banks, in-home assistance and such.

She told me no, there were no such agencies here or in the next county.

Can we check again, what’s going on? She wants me to work for free for an agency that would help me go skiing if I were an amputee, but there is no agency to help me find tax preparation assistance or a food bank. Yes, I really would like a food bank; the cupboards are getting close to bare.

She told me I could ask about food at churches, I could ask utility companies for special low rates for the needy, I could ask Social Security for any other services for the disabled that they might provide for my son who is already on SSI. She asked, had I changed my address with Social Security?

Yes, I told her, I had trouble trying to reach them online or by phone but I had sent a letter and was hoping that by now the address change had been processed.

She told me, “Oh, there is a local Social Security office.”

I was surprised to hear this as I thought the nearest one was nowhere close. She told me yes, they had an office in Spacetown. I live over 230 miles from Spacetown. Google says it would take me well over five hours driving one way.

I’ve thought and thought about this. I don’t like to think ill of people. It’s thirty hours later and I’m still pondering this puzzle. She’s a social worker. She must have gone into this career to help people. She must be full of empathy.

She thinks I should work for free, go ask a church for some food, drive all day to ask for help in my home, and then if I should happen to lose a leg maybe her friends will take me skiing.

Tell me I didn’t get that right, please.

Thursday, January 14, 2010

Home, where the heart is.

With all of our stuff that had been in storage for a year, with our two dogs and our four cats, and with help from family, friends and complete strangers, we made it into a home in time for the holidays. Thank and bless you, all who helped.

In three days it will be a month, already, since we moved in. We're still negotiating our ways between chaotic dissarray of furniture and boxes but from the first night (thanks to my sister's preparations that day) we've had hot meals, warm beds and plenty of serene surroundings to help us chill out. In fact, there was a gorgeous snowscape waiting to greet us.

I had hoped to get here and then just rest, restrestrestrestrest. But wait, if I say "rest" several times quickly, like that, it comes out sounding like "stressed stressed stressed." I'm trying to let the worries be duck's water, to let them slide off and go forward each day doing what I can and not worrying about what I can't accomplish, but there's so much to do and of course it all needs to be done right away.

Then there are the changes, losses, adaptations: coping with the move has been nearly as high stress as was the search for a home. Shortly before we moved, several different people complimented me on my bravery. What's brave? That I keep on going, day to day, despite bearing more troubles at once than the average American has to face? I wonder, first, what else there would be for me to do, day to day, but to keep on going, and second, how well would I handle the troubles of a Ugandan mother during the drought or of a Haitian mother after the earthquake. I look at my kids and know it distresses them sometimes, not to have the life that others around them appear to have, but I'm grateful they're housed and fed.

Keeping them housed and fed is an ongoing challenge, however. At every turn there's more paperwork to do. "You say you're disabled and can't hold down a job? Here: fill out these forms, and these, and these." Is this a test? If I could fill out all those forms, I'd be able to do a job.

We still haven't signed up as test subjects with Whittemore Peterson. One more element needs to be put in place: I have nothing to fill out under the doctor's information. I've tried to get us to appointments with the doctor we plan to see here in our new county, but weather and illness have prevented our going. Meanwhile, prescription coverage was denied because I haven't completed the paperwork: a maze to negotiate, to get past coverage canceled and new coverage in place. It shouldn't be so tough, but each and every thing is just that little bit more complicated by bureaucracies and bungles than I can handle.

Yes, I'm grateful that we're housed and fed, that we're alive, but I'm also aching so bad that sitting up at the computer is limited, and cognitive stuff is fogged by pain and overload. I'll try, today, to fill out at least one paper and get it in the mail. A pile of others will continue to grow.

I'm supposed to rest. I'm supposed not to stress. Each day I feel in aches and exhaustion the price I pay immediately for being unable to rest. What price will I pay, longterm?

When I came back to my blog at last after over a month, I saw that a blog I subscribe to had a new post about ME. It seems we're more likely to die from heart failure, according to a study published by the US National Institutes of Health on its site, here.

Am I brave? I'm tired. Heart failure sounds like a fast death and then a complete rest. But I want to see my child beat ME and live to a ripe old age. Having a home is one step towards Hazel's heart health, so cowardly and defeated though I may often feel, I'll push on as if I were brave, hoping I'm not pushing too hard.

The dogs and cats who come to me to cuddle right when I'm feeling most pain, my children who make me feel worthwhile when I can do something for them and who find ways to help me when I can't, my sister who checks in and offers help from grocery shopping to school rides for my well child, the family and friends whose responses to my emails let me know I'm not alone though I might see nobody but my kids for days, hope. There's always something to keep me going, brave or not.