Wednesday, September 19, 2007

Feeling 'Normal' for an afternoon.

I am sure there is some politically correct reason why a person with disability should not use the world “normal”; actually probably about 10 reasons. But, yesterday, I was in a group where I felt ‘normal’ and it was great.

I went to a support group for a neurological condition. Because of confidentiality, I can’t write about the actual events but I can explain what I felt. I had gone to this Neurological Organization because I seemed to have a lot of similar symptoms that their diagnosis did. I explained that I was still far from a definite diagnosis and that what I had was something neurological and they invited me to the support meeting.

If you are gay or lesbian, you may remember the rush of the first couple times you were “out” and met and talked to gays and lesbians. There was that rush of feeling because you realized that all the things which made you feel different from other people and the things people questioned you about yourself, and the things you could never seem to explain adequately here, around other gays and lesbians were just....normal. At a gay/lesbian dinner no one goes; “Are you SURE you are attracted to women? Maybe you just haven’t met the right guy.” Because, of course you are attracted to the same sex, who wouldn’t want to be? And instead of being the person who was different looking in, you were now in a group that was showing you what was possible: “Want children, no problem. I have two from AI, myself.”; “We went on a lesbian/gay cruise; it was great; k.d. lang performed as entertainment.”

Well yesterday, for a couple of hours, I was in a room where everything medical that makes normal people uncomfortable about me was totally normal. Even the fact that it wasn’t a meeting room with big armchairs but a big space for different types of wheelchairs; it was a room where nothing I could do medically would be considered odd, or unusual, or threatening. I took some medication during the meeting; no one even took a second glance. When people talked about a particular symptom or experience, I would look up and just from the look on my face and the meeting of our eyes, we knew we had the same symptom. Where in the rest of my days I try to explain what is going on or what I am feeling, we jumped right over that to “What did you do for it?” They told ME I was tired (which I was), they said they could see the signs. I found out that the reason I could have the same attack/prolonged medical problems as someone else and not be admitted to hospital was because they had a label; a diagnosis and I did not (suck!). But the encouragment was the meeting saying to me in various ways, 'you're one of us.'

I think sometimes, whether it is your anime obsession, your sci-fi obsession, your knitting obsession, your scrap-booking obsession; whatever it is that strongly defines an aspect of who you are and how you view the world (For example, if most of your quotes during the day; “Never give up, never surrender”, come from Science Fiction Films, maybe you should go to a Sci-Con convention?) it is nice to be around people who simply “get it.” Where you never have to spend all your time translating what you mean and can move right into the dirty jokes (do knitters have dirty jokes, I hope they do).

Anyway, they voted unanimously that I could come back so until I get a firm, final and definite diagnosis, there is a place I can go.

In other unrelated news, I now have an electric hospital bed for my ‘can’t get out of bed’ and ‘I am choking on my own saliva’ days. My first response was, “Which of these buttons does the back massage?” And since one of the guys who put in the bed also worked for Search and Rescue, we traded nasty rescue stories (I am now convinced that no one should ever, ever go outside, at least not in the ‘real’ outback – after a few stories which include the phrase “shards of bone” you get convinced pretty quick). Anyway, back to bed, I have to see if I can raise my back and feet up enough to squish me like happens in the slapstick films. It is good to see I still have that scientific enquiring mind.


Casdok said...

Guess what?! I have been to sci-fi conventions!!
And thank you for your suggestions.

kathz said...

The support group sounds good.

I agree that it's great - and far too rare - to spend time in a group where you don't have to explain and justify the things that are important to you, whatever they are. It sounds like you've met some good, supportive people.

I hope the bed works out well too.

Sober @ Sundown said...

Hi Beth,

Maybe those in your new support group can tell you how to tell your doctors how to diagnose you.....

When you have the energy, please email me with the disease. I would love to know what it is.

Ms. Pet said...

Can't say I ever experienced that sense of acceptance when I came out. I was called breeder, traitor and literally spit on. Even today, every time I date someone new, I have to "prove," that I"m not bisexual. About ten months ago, this leatherdyke with disabilties, she told me I "looked like a dyke," to her and I almost fell on the floor, because in twelve years since I'd been out, she was the first lesbian to ever say that to me. *smile* Can't say I've ever experienced anything but "you're not one of us," messages both Coming Out times, so, *shrug,* can't relate on the Coming Out Gay and finding acceptance theme.

I have experienced to a certain degree this past year in the little queers with disability group I go to which has been nice. Which is why I'm now determined to go on a regular basis.

Human beings, generally speaking need desperately to feel a sense of "belonging," within a larger group dynamic, something that is rare for us PWDs as you no doubt know! LOL *grin* I'm glad you have found this group, that makes you feel so "normal." It's important to feel like your "us," and not "the other," all the time.

Congrats on the new bed. I've always wanted to go to sci fi conventions, didn't have the money before, now I do and am working on the weekends! LOL Figures!

Daniel, the Guy in the Desert said...

I'm really glad you had a good experience there. It might not have changed anything medically, but it sounds like the contact with others who understood you helped.
And Sober makes a good point. Maybe they can tell you what to say to the doc's so they'll zero in on things a bit more quickly.

Zephyr said...

Yep, like Ms Pet, when I came out I didn't feel like I belonged at all, because I'm bisexual, and therefore straight, to the gay and lesbian community. I got that sense of belonging for the first time in my life when I went to a BDSM play party. I looked around and thought "These are my people. This is where I belong." It's still true. That's why I keep hosting rope bondage nights, to foster that sense of community, and a I try to make sure my guests feel it too.

Sara said...

"I have to see if I can raise my back and feet up enough to squish me like happens in the slapstick films."

Do be sure to film that -- for science, of course!

Cooper said...

Support groups are the best!!

Dammit..I was looking for a good arty lesbian shot for my blog page (enough with the hetero couples - need some equal opportunity) but couldn't find a decent one..and here you have one...oh well, I'll keep looking...

GayProf said...

That's great that you found a group with whom you can talk!

I try to avoid going outside as much as possible.

Elizabeth McClung said...

Casok: Me too, hope things are good for you.

Kathz: so true, it is too bad the meetings are just once a month.

Sober: actually, I don't have a GP, but I'm working on that.

Ms. Pet: You must have a greater endurance than I, I'm not sure I could hang with people that treated me as such for 12 years.

I would recommend the Seattle convention - I hope to go to SakuraCon one day (Seattle anime convention - the Vancouver one is a little...subdued)

Daniel: Thanks - they are a good resource, more in the survival end of things.

Zephyr: Acceptance leads to empowerment, good message - I would be interested in coming to a rope n grope simply because the name sounds so cool.

Sara: turns out we put in the plugs wrong so my first attempt almost blew the fuses for the whole apartment - sorted that today so will attempt again!

Cooper - I have a TON more of arty lesbian shots, maybe I should email you a few.

Gayprof - let's trade, ironically I try to get outside as much as possible.

Marla Fauchier Baltes said...

I have been searching for another parent who has a child with an extra chromosome 6p like my daughter has but have yet to find anyone. I think your groups sounds fantastic. I can totally understand how great that would feel.

lilwatchergirl said...

I've had trouble finding a good support group. I live in hope that I might find one. Glad to hear you're able to continue going to yours, and that it's useful!