An odd thing happened this weekend, tho now that I've had time to think about it I believe I have insight. This last Friday was my bday, and it was a good but sometimes bittersweet one. i think I missed my friends badly, and my little boy-cat Tommy Lee very much. He was almost 12 this year when he died, and it was and is really painful. This was my first bday in 12 years without him, my 2nd without my mom, and my fourth without most of my friends around me, since they all live in more civilized areas. Plus, I just think this year aged the hell out of me.
But it was okay, and the weekend was mostly fine. Sunday the wee church my bear and I go to (UCC, quite liberal) even though I'm not Christian and he's Episcopalian started up again, and the first thing Bear said to the pastor was "You weren't here when they figured out what was wrong with Sam. She has MS."
Now, THAT was weird. I have no idea why he outed me like that, and being that MS for me is at present a mostly invisible disability, it really was an outing. I was asked to present the info during the "Joys and Concerns" part of the service later, and I gave a short summary and said I was pleased no one was looking at me like I would be dying soon. And truly, no one was looking at me that way. Most asked polite questions and said I looked pretty good. So as far as outing goes, it wasn't too bad.
But I couldn't figure out why bear had even mentioned it. I am not sure he knew either, and I asked, and he said he wasn't sure. Later, at lunch, he said he thought it would be good to have prayer, support, etc, for all this. I actually think, like some partners of folk with MS, he does not have a very good support system here and when he worries or frets are just wants to vent to someone about my mood swings and pain, he has no one really to talk to. I can understand that, but there are times I also think he might be a thickskulled guy type. I am not sure.
Of course, the truth is that there are not any good friends here-- most are stuck in their lives of children and work, and as a whole I think the area itself isn't that social. I have gone out more with former students than with colleagues, which is different from my last job. The truth is, this place sucks if you have MS. I'm so sick of having to always build from the ground up anything socially progressive, or even friendly, hell. Feh.
Now, of course, I think I should fly an orange flag (and who picked that color? Hideous!) and stuff, but still-- what does it mean to be a "proud member of the MS community"? It's not like any of us would volunteer for the task of living with MS and it's not like we DO choose to get it. I certainly won't let it get me too down, and i will set misinformation straight, but if I let it define me completely it seems simplistic and not helpful to me. I can certainly see where visible disabilities have and show solidarity against the BS of the world. but us invisible (sometimes) gimps? half the time I just wanna get to wheelchair-phase so I can get over the long-term stress of gradually falling apart, and other times I wish I just would get over it all.
House on Wheels