The creep-up-on-you blues

Today has been one of those hectically annoying days, full of meetings of different types and work and more meetings... and work. And a sammich or two.

But it's also been a little insidious to me. I have been having a hard time sleeping so I finally took a scrip crip muscle relaxer to sleep, and did well. But the insidious leg issues began-- first in my left hip/ back joint, which stretching sometimes help, and then worse, the creeping sensation that my knees will buckle soon. Off and on I've been using my cane, more off in the last week than on, but the feeling of legs about to go is really a little-- well, depressing or at least off-putting. I don't like to be reminded of relapses and all that. I've been in a kind of relapse for a few weeks, mostly dizziness and weakness, and I'm thinking I got the dizziness beat now. The legs? Hmm, I dunno.

I don't think having MS makes me any more depressed than I had been, because I'm mostly over the "woe is me, I can't play football anymore!" I hadn't done sport in a long time, short of the gym. Now, I'm using my overtiredness as an excuse to avoid the gym, even when I'm not as tired as I used to be! Sick, isn't it?

But yesterday, when it was still over 100F here, the wobbly legs and my tiredness and the heat kind of brought me down. Sometimes I just wish wheelchair time would arrive so I could get a superfast Ben-Hur chair with photon torpedoes. I WILL be that pain in the ass crip!

But until then.. sigh!

R-E-S-P-O-N-S-I-B-- oh, you get it

you have no idea how much i wish Miss Ree would remake her classic (pace, Otis!) Today was an interesting example of how responsibility has become a dirty word. It's endemic to have excuses for anything short of fessing up with "My bad. I screwed up, and I guess I live with the consequences."

HA! *insert snorty sound here*

No one likes to be wrong, but given I have not taken advantage of my neurological nightmare to justify my screwups, I feel like too much is supposed to be forgiven without reprisals. I want to go somewhere where I can bury my head in books and pretend the world is full of responsible, hardworking people who believe we are all in this together. Kinda like Iowa City, but without the tornados, you know?

Ach. Well, perhaps I will start "coming out" as an MSer and see how it affects people's perception of my responsibility. Maybe I can claim I'm doing it for research, hey? *evil grin*

LOLcat of the weekend

dis studies review...

Well, so far the academic disability studies stuff is... well... overly pedantic and heavy on Deaf culture-- maybe because t is large. There's not much on humor or media yet, and there is a lot on feminist takes on dis studies. I am looking for more on visibility, but without the self-righteousness. I did read John Callahan's funny and sad bio, "Don't Worry, He won't Get far On Foot"-- he's a quadriplegic cartoonist of wicked sensibilities. He is quite funny-- sample toon: man with dark glasses and tin cup on sidewalk with sign that reads "Please help. I'm Blind. I'm Black. But I'm not musical." My black blind friend cracked up over that one

So between Callahan and House, I intend to enjoy this first article. I am sure eventually articles will appear by me using poco work, but for now-- long time, no article writing!

At least I'll also be able to revisit House on DVD--can I write the DVD sets off on my taxes now?

fun with gimps!

So, bored as I am with my usual suspects (Women's Lit), I've decided to write an article on disability studies-- specifically, and befitting my gimptastic self, on how John Callahan and the creators of the character Gregory House are manipulating the able-bodied fear of the disabled for both humor and gain. it's complex, kinda, and I'm still articulating, but basically I'm going to a conference where the theme is "Voices", and the voice I wanna talk about is the snarky, funny, darkly comic one which through manipulation speaks volumes about the reality of disability or difference experience-- that not all fat people are happy, not every gimp is forgiving when you knock them over, not every blind person can sing.

We'll see if I pull it off, but I can say there's alot more snarkiness out there from gimps than I ever imagined, and I say-- cool!

The gimp-numbers: 939,000 and counting

Relatively new information (Ap 2009) of a study done by NM Center for Development and Disability and announced by the Reeve Foundation-- the number of people with MS-related paralysis is 939,000.

939,000.

There are supposedly only 400,000 people with MS in the US, according to MSAA and NMSS. The Montel Williams MS Foundation rings in with 1 million.

Not to pick nits, but 900000 plus is significantly more than 400000. It's significant. And it kind of explains why so many people know someone with MS, or have a family member with MS.

939,000- and that's just with MS-related paralysis.

What about the people without paralysis but with MS, like me? And no-- no one officially tracks MS statistics, which is one reason MS still seems like some kind of "orphan" disease, rare and generally downhill all the way for people with MS.

Well, WE know that's BS. WE know that the incidence is higher than anyone wants to admit. WE know it's the most commonly diagnosed neuro disease in young adults, people with a lot of life to live. WE also know it sucks.

2 bills are in Congress now, Senate bill 1273 and House bill 1362, both called the "National MS and Parkinson's Disease Registries Act". I wrote both my sucky senators (I say sucky because they didn't bother to get back to me even with the autoreply) to ask them to support the bill, and may well follow up with them. That there's not already a registry is frankly horrifying-- I know NARCOMS has the MS survey for people, and they have quite a few registered, but it's not necessarily nationally comprehensive.

Perhaps the bigger number will shock people into more activity, and more urgent activity.

Then again, orange-colored pigs may fly... sigh!

OH- and today is the sixth anniversary of the day my Bear and I met! Good times... I love you baby!

The foofoo post

Okay! House is over, and boy... this season should be fun!

Actually, a lot to think about given the recent desire to think about the psychology of disability. I mean, it's odd to say much about it now, with not a whole lot of experience, but at the same time, ala the episode tonight-- sometimes the right time to reflect comes to you, you don't go to it. So to speak.

Disability is just that-- a distortion of lack of some type of ability or a ability-ness that is not quite "right". Nuff dancing. The gimpness for me is physical, compounded by the mental rags of post-PhD hood. What was nice in the House ep was his confrontation with the least rational part of himself, his emotional mind and life. Was thought- provoking. I took this away from it:

Don't try to fix everything-- you're not God. Just apologize (if necessary) and let it go.

Boy. Letting go is not my strength-- because hey, why let go when you can cling to archaic, pointless, and ultimately useless ideas?

I need to go to med school. Boredness is dragging me down.

anyway, new season of House rocking already! Paz.

More health care thoughts, and one cool doc!

If possible, I've totally come to love my MS doc even more than I did before- dig this:
My doc, who for now will remain nameless, already had my admiration by having a MD and a PhD-- hell, I only have one, and it was the "easy" one (PhD). While farting around online looking for pics of my doc's hospital, I googled his name and clicked on "Images", and lo and behold-- he has an Olympic medal!

Turns out he was on Italy's 1992 bronze medal winning pentathlon team in Barcelona. In the individual pentathlon, he came in 5th in the world. I mean, what can't he do??! Besides, well, so far cure MS. Sigh. And he's quite nice andd approachable, too. Perfecto!

Anyway, the snarky part of the post is how screwed up the healthcare reform movement has become. While I knew it would not be easy, I didn't know or think it would devolve into even worse bitch slapping than the last go-round. I think the pres has shown himself to waffle a bit, and has allowed what I do believe to be a haphazard opposition to coalesce and make noise. I think the misinformation is bullshit and I believe that change must occur. it has to, for us to move forward in the country toward a greatness we have lost much of. Nothing, no health care system is all perfect, but I wish we could get our heads out of our asses and see that we're a bit broken healthcare-wise, and will keep getting broken. Why do we fear so much not just change, but investigation of our history and errors? What the hell is so scary? It's not like the Cubans are gonna invade with universal healthcare.

What bothers me a lot is just that-- we're ignorant sonsabitches, god love us, and sometimes we have a real hard time admitting we aren't number one all the time. I mean, just look at thhe upcoming world cup! The world don't revolve around us solely anymore-- and seems trying to cope with healthcare reform could help us really change so that we understand we're a global community, in a literal sense. Why not admit medicine is broken, at least a lot of the administrative side, and work on it with sleeves rolled up? That is, after all, the American way.

I guess I should explain about that page title...

Well, first off I'm officially tired of political blogging. I've not posted for yonks, because although I care, I hit the "I have to take care of myself" wall. So i decided I'd do myself an the world better blogging about MS and life in Crip City.

I tend to defuse discomfort (and cause some, yes) about my cane usage by saying things like "Hey, can you hold the door for the gimp?" or "Gimp coming through!" Hence "Gimp Chronicles".

However, I have to shamefacedly explain "shade Stealing Crip" a bit more. Once three years ago BD (Before Diagnosis), Bear and I were driving to Lake Havasu in Arizona. I was psyched as we drove up to the parking lot for London Bridge and saw a shade tree I could park under in the nearly-empty lot, in the 127 degree weather. As I pulled up, I noticed it was a handicapped spot, so in a wry, and I promise to god funny moment because I would never say something like this twice I yelled "Goddamn shade-stealing crips got all the good parking!" Bear gawked, I gawked, and then we both had terminal giggles for a long time. It became a joke because he knew I wouldn't and didn't mean anything by it, bu was hot and frustrated by parking.

Of course, now I AM that shade-stealing crip! I don't flaunt the placard, and I do often forget to hang it-- it's a good thing my school cops know my car by now. I had never parked in HC spots when I was sans placard, and I used to get pissed off when non-crips would swing in there, or worse, non-crips would use their mom/grandma/dad's placard to shave a few feet off their walk to the store. Assholes. Oh, can I type that?

Anyway, I keep a sense of humor about it and frankly, I do enjoy some of the discomfort I cause. Because as I mention, there ain't no romanticism in a cane when you really need one. And now that GimpDoc on "House MD" has had a cane with the flames painted on it I had once wanted, I will now need to get something different airbrushed on mine. Right now on one of mine I have a dragon sticker. Bleh.

Crips ahoy!

Once more with ganas...

...first off, it's not yet easy to post with a tiny keyboard! But the cost of technology is high.

Lately I've been having more and more thoughts about not mortality, so much, as aging and wondering what exactly happened between 2004 and now. While this year has been a pain in the ass, brain, and legs, it's also been one of those classically thought-inducing periods of life where you reevaluate. But I think what it's resulted in is a lot of confusion about not only what I'm doing, but also why I'm doing so much of it in the same way.

I had a chat with Bear last afternoon about how I feel sometimes like my life is still not quite age-appropriate, that there's a lot of growing up in practical ways that I feel I need to do. It's hard to look at 39 on its way without wondering how I got here in one piece, and also to look at why it's so hard to make some changes and stop bitching about life being annoying. The number of years these last months have put on me since Jan 13th or so is really only now becoming clear. I don't think I've had any globally Zen revelations, but I've realized some real limitations. So long as the MS wasn't really bothering me much, which it hasn't for a while, I think I could kind of consider it a lesser-relative of Victorian swooning-- a kind of romantically stoic thing which really didn't matter because my brain is functioning relatively well (more about that later).

However, especially recently, it's become clear that there is zilch romanticism in the on-off use of a cane, of a crip parking tag, or of MRIs of holes in my head put there by something no one can cure yet. I mean, I like being different, but recurring vertigo and accompanying unsteadiness which brought out my cane after 2.5 months thanks to MS isn't anything "different" that is good for me. I have a really hard time remembering that there's no cure, and each drug works differently, and damn it, I can't predict it. I also have an impossibly hard time not just shouldering through life and insisting at all turns that "I'm fine." I never realized until now that I do actually need someone to lean on, that well-- once again, health and life shows me I just can't do it all all of the time. As a few people recall, admitting that isn't just scary, it's psychologically a real problem for me. It's probably not the disaster it was at Iowa, but still-- once more, I should find a decent shrink and try to articulate being both hypercompetent and really uncertain and scared.

See, the issue might be that I know too much but just don't know enough, and I hate ignorance in myself. It makes me a good and voracious researcher, which won't make me any money but makes me happy. While I am not worried now about my brain abandoning me, I find myself forced to think about a future where not knowing isn't curable-- no matter how many king's men and horses work on the problem. I guess maybe I'm tired of terminal "I'm fine"-ness. Either it gets okay, or the uncertainty grows before I have time to figure out how to deal.

Either way-- there's not much likelihood now of me checking out early, and karma may doom me to a long life-- and one most interesting and hard indeed. Wouldn't be my life if it weren't, I guess. Must be a lot of fun and contentment in a dull, average, placid life. Who knew I might want that one day?