"Diderot writes that the word is not the thing, but a flash in whose light we
perceive the thing..."
Sarah Manguso, "Address to Winnie in Paris"
So writes my sister in the craft, Sarah Manguso. She also wrote a memoir of being ill with CIDP and her state of mind during its constant relapses and remissions and the trying out of different medicines and doctors.
I'm selling it short. The book, The Two Kinds of Decay is really something you should read. It is one of the best memoirs of illness I've read yet, having established the fact that illness memoir isn't the story of the illness, but the person we become in the process.
Before I got sick, I could feel the light of the future falling on my face.
But a voice inside of me whispered that I was about to be undone. The weather was going to change. I was going to change. Everything was going to change.
This came to pass.
Most of my doctors, I find, are unconcerned with whether I can do my iADLs. I recently discovered the term for this. Your ADLs (activities of daily living) are things like feeding yourself, whereas an i(nstrumental) ADL is cooking for yourself.
I want to be able to do my iADLs, so that one day when my parents are gone, I will be able to take care of myself. Because I am 30 and Black and both my parents are Black, this day may be nearer than one would suppose.
My day shouldn't be...it can't be dictated by whether I am first or third in line at the grocery store checkout.
Yet when I try to get something that would ease my difficulty in doing my iADLs (a handicapped placard for instance) I get nothing but trouble. And now, because of that little tiff, I don't have a primary care doctor at all.
I swear, doctors act like little spoiled-ass brats sometimes. If they were my children, I would make them all go cut their own switches, beat them and then make them sit in a chair facing a blank wall for thirty minutes.
In other news, tomorrow is election day which I am going to participate in, even though I hate it. For one office, my choices are the Democrat associated with thoroughly corrupt local politicians, the Republican who wants to repeal the Obama Health Care Bill in its entirety and a Libertarian who doesn't seem to be with us on the planet Earth.
I don't want to vote not because I'm apathetic, but because I actually care. I don't want to put any of these jackasses into office! There are a few I wouldn't elect to be night manager at Super Target.
I'm also kind of worried about bumping into someone I know at the voting booths. I still am very shy of people who aren't family – an effect of having been so badly mistreated in the past year. I'm hyper-aware. The feeling I would only get around people when I was walking home alone by myself late at night is the feeling I have around people all the time now.
A constant wariness. Now, bearing in mind I was never the most warm and forthcoming person to begin with. This just heightens in my mind the need to see a therapist although I cannot afford one, the same way I cannot afford wrist splints or ring splints or even my compression hose. Things are so tight around here I'm even paying a portion of the utilities.
On the plus side, I am becoming a master thrifter.
Thrifted, right down to the necklace which I found in one of the drawers of my thrifted dresser.
I'm still hoping to start a petite fashion blog, with an angle of petite fashion, disability-chic-totally cheap-I'm covering up my knee brace today.
Most petite bloggers are far tinier than me, on the order of three sizes, which when you're just a couple inches over five feet is a lot. They also seem to have jobs and shop at places like J.Crew or at least Ann Taylor.
I don't think any of the places I can afford to shop even carry petite sizing and I get really excited when I see a sweater I like and there aren't any moth holes in it.