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...nothing here is promised, not one day... Lin-Manuel Miranda


Oh, my. i mean um, oh my.
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Mood:
Grateful

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When I wrote my last blog entry, I wrote it somewhat from frustration - which is obvious if you've read it. I've spent hours of my life recently trying to plan on attending Worldcon in Spokane, where I hoped to connect and reconnect with people and to honor Stu Shiffman as much as possible, in every way possible. And to be there to see two of my wonderful friends be honored as guests.

As it became more and more obvious that this was just too much, I heard from people who suggested things that I'd already discarded because they would not work. It felt awful saying "no" over and over, especially when it was from friends trying to figure out how to get me to Spokane. Most of the suggestions showed me that people did not know or understand or realize why I was using a power wheelchair and what my limitations were. So I wrote "What Exactly Is Wrong With Me" yesterday morning, and posted the link to it on Facebook.

Oh my. It sounds naive and ridiculous to say this, but it's true: I had no idea. So many people, so many people have responded by thanking me for explaining. So many of you said you always wanted to know, you wondered, but did not feel it was polite to ask. And part of me is squeaking "are you kidding me?" Because it never occurred to me, ever - no really - that people felt it was rude to ask why I was disabled, why I was using a wheelchair, why this, why that.

What did I think? That people didn't really care. That people weren't interested. Everyone is dealing with stressful stuff. We all are seeing illness, family matters, job hassles, car hassles, parents, kids, cancer, I mean come ON. I am totally aware that pretty much everyone I know is dealing with shit. And I guess I assumed - if I thought about it, which I didn't do too often - that people were just tired of hearing how I can't go here, and I can't do that, and I can't do stairs, and no, no one can carry me, and and and I just figured I am just another person with issues. Like all of us.

And then you wrote back. Here and on Facebook. You thanked me. You thanked me for pouring out all the crap about my limitations, my disability, my frustrations, the fact that I've got this uncooperative and deteriorating body that limits me, and causes me grief. You thanked me for making it clear, you said amazing things about me, and how you admire me. Those of you who are disabled (possibly how we met on FB) talked about how you manage, or don't. You made me cry. Right now. I am so grateful, so overwhelmed, so stunned.

First request: Please DO NOT hesitate to ASK about this stuff. I don't mean you go up to a stranger and start in, but if you read that post, you know me. You are my friend and you can ask. Some of you have been my friend for over 30 years. Some of you remember me as someone who could walk, dance, run a convention, party. But oh please, it is not impolite to ask. I'd rather you knew and understood. And I really would prefer that to you ignoring or pretending the problems do not exist (yes, I have had people forget" that I use a wheelchair.)

Some people assume and I sorta kinda hate that. Since I'm the "right" age, gender and ethnicity and I live in the Pacific Northwest, that I have MS. I don't. I have had many, many friends with MS and we have much in common. But I do not have multiple sclerosis. Nor do I have a major hassle with arthritis. I have some - don't you? But that's not what keeps me from standing, walking, reaching, bending, and blah blahblah.

Second request: Please do not minimize or dismiss your pain and disability issues because you see mine as worse than yours so you can't complain. Bullshit. Dear friends, pain is pain. Pain hurts. I know so many of you deal wtih everything from migraine to fibromyalgia, ms, and all sorts of serious chronic issues. Please do not ever say to me "I can't complain, because you have it worse." YES, you can. I am a very good listener and unfortunately, there is not a finite amount of pain in the world. It keeps showing up. I've lived with chronic pain since I was about 20 years old. I know a lot. One thing I know is that people hurt. You get to talk about it without diminishing me. Okay? You are allowed to kvetch. Okay?

Thank you.


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