Friday, January 13, 2012

2012, EDS awareness, etc.

It's a new year. Resolutions have never been a huge deal to me because of my complete inability to stick with them beyond the three week mark, but this year is going to be different. This year I am resigning myself to being sick for the foreseeable future. On her blog, Michelle has expressed perfectly why this is a good course of action. (Also check out The Dorothy Shoe Project while you're there.) In many ways, that is a great comfort. It actually makes me hopeful, because I can stop aiming for impossibilities and be reasonable for a change.

I can breathe a sigh of relief if I know I don't have to force myself to get a full-time job and move out of the house and be self-sufficient by the end of the year. Ironically, it's that kind of thinking that leads to despair. Accepting this body as it is gives me glimmers of hope for my future. Small ones, and nothing like the way I used to feel about my future when I was in grad school, but that's all right. EDS is in my life now. Well, okay then.

On this blog, I can change the subject I am going to change to subject. Not that I am going to stop blogging about EDS altogether, but other topics will more frequently make their way into conversation.

Before I do change the subject though, I want to talk about awareness.

It puzzles me that people seem to be focused on raising EDS awareness via shows like Dr. Oz or House (before they actually featured it to everyone's general dismay.) This is not how diseases come to be known by the public. Awareness comes from doctors. As more people are diagnosed, they inform their friends and loved ones. When a person of high stature is diagnosed, a news story might come out, which will catch the attention of the general public.

So I think it would be wise for a bunch of people regionally to come together, rent a space makes some sandwiches and cookies and try to get an EDS expert to come and speak to local doctors, nurses, physical therapists, etc. I think this would be very difficult and probably expensive, but Dr. Oz is almost certainly never going to do a show on EDS. And even if he did, I don't think it would be half so effective as going about the problem in the way I mentioned. Doctors will listen to another doctor much more easily than they will to a patient insisting, "But I saw it on Dr. Oz!" The goal of awareness should be to get people diagnosed quickly, accurately and treated effectively. The general public can't do that, I'm sorry. It'd be nice if my friends knew what EDS was, but I'd really prefer if my doctors did.

I am trying really hard to write a chapbook this year. A small book of poems, somewhere around twenty pieces. You wouldn't think it would require such a heroic effort. But of course, EDS is drawing in crayon on all my carefully typed up plans. Editing a poem is really hard work and it requires a lot of concentration. I've been having 3-4 migraines a week, which makes it really difficult to plan anything. I just grab my notebook in one hand and my Imitrex in the other. My stomach is also still in quiet revolt, but I'm better at eating, so I haven't lost anymore weight.

I'm volunteering with a local organization dedicated to getting people paid a living wage and by extension writing to lawmakers and trying to insure that unemployment and health care benefits don't get cut. I'll be doing most of my work via e-mail and phone, editing and writing letters and possibly blog posts, but I really look forward to it.

I also want to talk about a million other things: books I've been reading, autism, interior design, racism and more about the poetry I write. If any of these sound interesting to you, please say so in the comments!


Jilly said...

congrats on writing - I haven't written a poem in about 2 years now. :/

I think going to medical schools and talking to students as part of a show and tell might be helpful.

Yvette said...

Thanks. It's okay, poetry will wait for you.

My sister suggested the same thing to me, going to med schools. I think it's a good idea. I just hope people would be receptive!