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

Previous Entry :: Next Entry

Read/Post Comments (2)
Share on Facebook
It's been very trying and at times scary this week to be me. While I am wholly recovered, physically, I had what appears to be my first experience with the dreaded dehydration. It did not bother me in the ways it seems to affect the majority of people. And while I was just this close to going to the emergency room at the local hospital, I dreaded that because of the always-there-constant-hassle factor of the wheelchair

I think I experienced dehydration as contributing to major pain. At first it was the rather vicious migraine. But I get those...but... And I experienced some of the worst lower back pain I have encountered in the over 40 years of chronic pain and disability. I tried something with the "it can't hurt" idea in mind. As I did so, I tried to research the connections. I know my body well but there is, alas, always something newish. In a short time after taking migraine medication and lots and lots of water, I began to recover and fast.

Recently, I discontinued a particular medication. it simply was not doing its job probably because I din't have what it's indended to treat. Now I have an early and wretchedly effective warning system in place. And maybe the drug was responsible I just know that the "side effects" of it are overwhelming. But for a few days there, bending, moving, hell, just getting into or out of the wheelchair.

It brought home, again, a common concern in so many of our lives. What do I have to give up. What do I need to start planning. How shitty shitty things really are.

That wasn't even the main deal. That was the realization was that I truly, madly deeply love fandom but it is getting less and less likely that I will be out and about in that world for much longer. I continue to function, living alone with a cell phone by my side. Paying far more able-bodied people to do everyting i cannot do. That list grows longer.

This has been pointed out to me as a probable resolution for Things. I'm probably going to live far more on the internet that in real. Real requires planning,weather I can deal with, a healthy wheelchair, sponteneity, relatively stable modes, None of these is really an option. Traveling on my own, which i managed a lot, is no longer an option. Standing up for any real time, or walking more than a few steps is no longer an option. The depression will still take lots of time to ease up.

I'm teeth-grittingly embarrassed that two people have been suggesting a switch my focus to an increasingly on-line presence. I apparently listened but didn't hear it until now. I still was fighting to get it back. I felt it was necessary to who I am to be doing the same stuff, living the life I used to live and did live until very recently. It makes such sense but I wanted to be a part of real life community and fandom the way it used to be. Oddly enough, it took David Hartwell's death, with me reminiscing about all the Hartwell times in my life for me to finally get that there hasn't been that reality for a while. I kept getting frustrated - I understood why it was such a problem, but thought things would get easier. They will not.

This is such a blow. One of the worst parts of it is realizing that there are many of you whom I will never see. From folks in West Hartford, Connecticut where I attended junior and senior high school, to Boston where I lived for 5 years. From New York where I have so many wonderful friends to Los Angeles. To San Francisco, Oakland and Berkeley where I lived for 10 years and developed my fannish life and honed my political skills. I will be moving out of Seattle, but I won't be going back to the east coast, and as I already cannot attend most conventions, there go the parties, the dinners, the hanging-out-in-the-bars and drinking or not. I've written how David's death offered me a major understanding of the luck that I have had. That luck is also pretty much done.

It gets more difficult and more frustrating to expend my energy on coping with a non-disabled world, where hotels sell out their ADA rooms before I arrive with my reservation, restaurants which still won't even indicate if there IS an accessible entrance, contests which offer air fare and hotels and there I'd be. Hi! Wave wave wave.

Science fiction has a bunch of esoteric expressions we use as shorthand. Like any community we have our own descriptions and our own jargon and in-jokes. *"Gafia" is commonly used to explain that you are essentially giving up your seat in hospitality for someone else. Gafia means "getting away from it all". I will still be there, as mystery and sf fandom mean both family and friend to me, but in large part, I'm gafiating. And not because I want to. But it's become clear that I must cut back, stay put, and not continue to expect what isn't going to happen.

In recent months, I made two personal changes which might not sound earth-shattering but were big big BIG concessions for me to make. One was to get a hair cut so that I spent less time shampooing and blow drying my hair. Needed because of increasing loss of range of motion and arm strength. The other? I haven't put on a tee-shirt in a couple of months and probaby won't again and I love, oh I adore tee shirts. Again, arms and shoulders and mobility. I still have pages bookmarked for tees that I want.

Expecting other people to remember and take care of me is unrealistic. i'm finally able to see that. I felt it when Stu was alive and especially in the first year after he had the stroke.

I need to stop ignoring the phrase that I have quoted on the top of this blog:

Happiness is equilibrium. Shift your weight.

Read/Post Comments (2)

Previous Entry :: Next Entry

Back to Top

Powered by JournalScape © 2001-2010 All rights reserved.
All content rights reserved by the author.