I tend to joke that I have little problem making BIG decisions; it’s the little decisions, the stuff that hardly matters that stops me cold. It’s an exaggeration of course, because I know I’ve spent time pondering Big Moves, but for some reason, it doesn’t always “remember” that way.

BIG decisions like going to graduate school (which almost didn’t happen as I was rejected and then later accepted – no, not wait listed, just accepted. “We changed our minds” which either was because a) they got turned down my more people than they thought would turn them down or b) my previous semester grades which I vaguely recall were pretty good, got to them. (I was taking stuff I liked right? No required courses by junior/senior year, right? I was taking courses like Ethics in the religion department (the hysterical sentence “Mom, I got an ‘A’ in religion” was only ever heard once chez Shechter – at least from me. My sister studied Eastern philosophy and religion and I bet her grades were excellent. She always had far more patience with religion than I did, and far more interest. I was only interested in it for things like political philosophy studying ethics and morals and “liberation theology” rocked my boat.)

The grad school decision, of course, was made pretty simply back in the mid 70s since there was ONE, count it, one school offering what I wanted. You applied and got it, or ….not.

Getting married back in ’77 seemed like a quick decision. I hope it wasn’t. I hope I spent fair amount of time deciding. I don’t remember. It was one of my less than stellar decisions.

Going to Livermore and getting arrested seems like a quickie; in one way I took 6 months to decide, in another overnight. Six months from the last demo, and deciding the next time I’m going in. real serious stuff and yet it seems like snap of the fingers, there I was (no shit).

Moving east to west, then back seems like it fell into place. Especially the latter when in “85 I decided to make such major changes in my life that relocating made sense. The last east to west move was made with someone, so it took time but boy, nice having someone to talk it over with.

However, put a big menu in front of me and I tend to giggle helplessly for a while. (thank god for Stu who lets me ask “what are YOU going to have?” for help and sharing tips. And he knows what I like so he really can suggest things.) Open my dresser drawers while I’m putting on leggings to decide which tee shirt (there are 3 drawers full, not to mention all those stashed in bags) and I’m glued to the bed with indecision. Color? Topic? Where am I going and will the people there appreciate it? Should I skip the politics today and go for the funny? (Stu even can do this. Guy’s amazing.)

I’m sure there’s an explanation of why these decisions are/seem tougher than the big ones. I’m sure it has to do with the decision NOT mattering so much so you have the luxury of blithering.

I haven’t had to make a Big decision in a while. I mean, some big ones were made for me, if you will. Stopping working was a big huge deal but it was in many ways a fait accompli handed to me. Moving here was a big one but again, Stu and I did that one together. There’s clearly a difference between what I guess we could describe as compulsory and elective choices. Choosing to move to X city was elective; it wasn’t the case of needing to be there for family or work reasons. Ditto grad school, even marriage. Quitting work because I had bizarre pelvic fractures that weren’t healing, couldn’t manage the whole sitting/walking/standing thing too well never mind the working 8 hours a day part, wasn’t exactly a choice. Some decisions are thrust upon you so you don’t really have an argument or time to process all the options. Even having surgery – I’ve not had a lot but one on my feet (I was 13) two on my spine SEEMED to be required. They talk about “informed consent” but when I underwent the operations, they seemed to be the only choice. When it’s the only option, you deal (as when people tell me I’m brave or whatever, which I mostly MOSTLY discount. Because I fell like there aren’t a lot of other choices – what else could I do? Complain? I do that. Feel sorry for myself? Ask Stu. I do that. Cry and whine. Oh yeah. I try to get past it though. But come on, seriously. What would you do? You’d manage, trust me. (I admit that some days, yes, I do accept that I am courageous. Some days I feel like yeah, maybe I am brave to keep going blah blah blah. But so what? We all know people who manage in tough circumstances and some days my life is hugely perfect compared to theirs. I mean come on, I can name 20 people with exhausting, tough and worse disabling conditions. Another 20 recovering from cancer. I know women who’ve survived abusive childhoods and/or abusive adult relationships. And that’s just the ones I KNOW. You know some too, never mind the millions out there we don’t know.

(Man I write the longest damn lead-ins, don’t I?)

I’m facing a Big Decision and it’s one that has frozen me. I can’t deal with it. I don’t exactly have to. I can ignore the idea but that’s probably only a temporary solution. (my favorite temporary solution. From A CHILD’S GARDEN OF GRASS in the chapter about hiding your dope. One short term solution was

“Throwing it up in the air is excellent for a short period of time.” GOD I LOVE THAT BOOK! And I love that Cornelia and I quote the same lines from it.)

I’ve dealt pretty rationally with the disability stuff all my life. I never went through a lot of the things I read about – the denial, the “I’m going to beat this thing” which I see over and over. I don’t know why not, not totally. Part of it was a) believing that THIS TIME FOR SURE we fixed it. Part was when the recent shit showed up, in ’93 it was so baffling, who had time? I kept waiting for answers until I was so stuck and it was so clear here were no answers that I sort of slid into this sort of “where I am now” acceptance. I still wanted to know WHAT because if you get that maybe you get fixes. Except that OTHER things would show up. While we were dealing, say with the pelvic fracturing, we were somewhat ignoring the hip thing because well, it wasn’t being a nuisance and we didn’t have time for that. By the time the hip thing became the big issue, it was pretty much too late – NOT that we would have done anything earlier as there was never anything to be done. The spine things come and go, almost; I have several spine conditions (all of which make you spit, too many s’s) and some are of the “ok, yeah so it’s there” and some are the “oh, I have that? Huh. Ok. No it doesn’t seem to be bothering me.) And when it does bother me, it does so in a very unnatural way. I get sciatic pain out of the blue which goes away sometimes in an hour, or three. You folks who’ve had sciatica you know how horrid it is and it does not go away like that. The sciatic NERVE gets inflamed and must be calmed – it’s not a “stretch it out” “do sit-ups” kind of thing. And it can last. Except I get flare ups (sort of the confusion I feel when I get “minor” migraines. They’re not severe, but constant. They are distracting but I can function. Sometimes. Who knew?)

I’ve accepted, whenever possible, that this is life-long. I had my first inking when I was a teenager, but we never new what caused that. I was 20 when my spine suddenly acted up and I had severe pain. I’ve had names thrown at me for years. Treatments, surgery, MRIs, x-rays, opinions, exercises, PT, CT scans ($5 for the cat, $250 for knowing where to put the cat), bone scans, biopsies, TENS units, consultations, acupuncture, massage, ice packs, hot pads, herbs, pills, rubs, lectures from idiots, good suggestions, bad advice, pats and rubs and hugs and sympathy and pain and swelling and electrical zaps from my nerves.

I’m 54. Since what, ’97, I’ve used the motorized scooter. On rare occasions, we toss the wheelchair in the trunk and I get taken for outings. That’s not really how it is at all but I hate being pushed. IIt’s hard on the other person, you can’t control where you are (unless you’ve done it for a long time, most of you tend to a) push me into people ahead of me when you misjudge the space I take up and/or b) push me too far forward or up too close to something because you can’t judge the distance correctly. It’s gonna happen.). I SO hugely appreciate my friends and Stu who are willing to schlep me, push me, include me when it’s a hassle because Andi can’t walk, do stairs, sit in a regular seat, sit for a long time, sit on the ground. Get out of (or into) a regular bathtub. Add to that recently, get up from the couch.

I joke that the bad news is you gotta come get me and the damn chair; the good news is I can get you a parking space. Often a good one, as the handicapped spaces in garages are often near the elevator and not all that far from the entrance. At ball games when I used to go, we knew how to bypass the horrid long lines for parking and get into the lot where there were still spaces for folks with permits. At Seattle Center, we can park on site, or find a space in the garage, when everything else is sold out. And you don’t have to feed the meter on the street when you park with me in the car. Huzzah.

It’s getting worse. I seems that it’s been getting worse rather rapidly of late. I’m having more pain. I’ve upped the meds – after 10 years or more on Vicodin, I’ve switched to Oxycontin (plus the occasional Vicodin) and it doesn’t always help. The knee that swelled up about a year ago – no apparent cause, no apparent fix – now not only is swollen but hurts. I can’t sit on the bed (my best way of sitting) without a squish pillow under that leg. (Squish pillows are SO cool. I mean the ones that have little tiny, I guess glass beads in them and squish. Never get tired of squishing, never all flat. Mine is a little bolster type. Clever little thing.

In recent weeks the other knee began acting up. And I’m just having TROUBLE walking. Not pain exactly but trouble. I don’t walk at all well, haven’t for years, probably due to the hip disfigurement. See, my hips are not properly in their sockets. Who knows what this does to you? I haven’t had answers for a lot of stuff in a while. We don’t know why X happens. There’s so much wrong that unless you were here with me 24 hours a day 9and even then) you probably could not tell me what was going on. When I get a zap of pain, and it’s gone, who knows what happened? Or if it will recur. And when. And why and what to do about it. I get twinges, I get shooting pains, I get zaps of electricity, I get weakness. I veer suddenly and walk into the door frame. I stand up and fall back and stand up AGAIN. I have trouble dressing myself and brushing my hair because of the bad shoulder. I do NOT want to cut my hair. But the shoulder thing affects everything from toweling dry to reading for a pen. Feh. Bleah. Pooey.

I saw a new doctor last week. She’s a physiatrist. I might have mentioned this – this relatively new area is called “physical medicine/rehabilitation” and it deals with well, as I’ve said, there’s NO POINT in going o a surgeon if you are not going to be talking about surgery. I wish there were a find of orthopedic doctor who is not a surgeon but that sort of ends up being what physiatry is.

I like her. For one thing, she got me. She walked in and said “Hi, I’m Julie”. I really appreciated that. If you know me, you know I’m a casual sort of person. This doctor is half my age – probably literally true or close to it as she finished her residency in 2005. And we discussed several things. One was the shoulder and how nasty it is; she thinks it’s worth trying PT so I’m going to try it. I do not have a good record with physical therapy; I tend to get fired by my therapists who say things like “this isn’t doing you any good, is it?” after 3 weeks. This has happened twice. I also tend to feel like I’m being experimented upon and no longer have patience for that. There are lots of treatments for lots of ailments but in my case, they often do not KNOW what to do. So they guess. I’m no longer really happy to let them guess, since it ends up being a pointless waste of time, money effort and energy. We’ll discuss that this week when I go in.

There is much she cannot do and that bummed me out. I really was hoping for some advice on what was causing some of my problems so maybe I could do things to minimize them or avoid the worst ones. The foot pain that I had some weeks ago that was almost to the point of me yelling? No idea. The knee? Who knows? It’s pretty clear that either my spine (which has curvature and stenosis and a fusion which may or may not be solid) is the cause of some problems while my hips (which are made of bones which are not where they should be) are causing much of the rest. I’m a walking batch of weird symptoms and body behaviors that no one can explain, therefore fix. Lovely.

I believe I’m realistic about what’s going on with me; I’ve had a hell of a long time to get used to it, going back to when I was about 19. But I’m frozen in place because one thing that Julie talked with me about was the idea of getting a power wheelchair. I’ve been writing this blog entry for 3 days and it’s taken me 3 days to write those words. I am truly madly freaked out by this idea.

I shouldn’t be, should I? It’s logical isn’t it? I cannot use a manual (push) chair and the scooter is not the best thing to sit in. Anyone who’s hung out with me knows that I tend to get out of it as soon as I can; it’s for getting around in, NOT sitting in. It’s simply not all that comfortable. It’s not BAD, mind you, but it’s not meant for long time sitting.

It also is not all that utilitarian in this house. It cannot fit in the teensy bathroom (nothing can – but that’s okay it IS teensy.) It can fit in other rooms, if you don’t mind backing out. It’s simply not worth using all the time in the house with those limitations. Course I don’t have a single day’s experience with a power wheelchair so I don’t know if it would improve things. But I’m FREAKED OUT by the idea of it.

So why? Stu understood it before I did. It took me days to even tell HIM because I didn’t want to be a soppy weepy mess when I did and I am wholly aware (I think) of the impact such a change would have on him and US too. He’s been so unbelievable through all this – you can’t imagine. He’s got massive amounts of empathy and he GETS so much. I don’t have to keep explaining to him (as I’ve had to do with other people, who never quite understand) but he’s gotten it all and is supportive and helpful on beyond zebra.

I’m not there yet and I’m not willing to admit I’m anywhere close. I’m having massive problems talking, even thinking about itl What Stu said to me is “it’s so final”. Yes. Nowhere to go after that. It’s permanent (I know that) and it’s not going to get better (I know that too) but somehow this MARKS me as disabled in a very specific way. A way that maybe I’ve been faking, finessing for a while. I’ve talked a lot about how people approach me in the scooter. They treat you, see you differently. You’re not a poor cripple, an invalid, someone with a handicap, when you’re in a scooter – at least that’s how the perception seems to me after 10 years using one. You ARE in a wheelchair. Period. You have a disease, a syndrome, an illness if you use a wheelchair, especially a power wheelchair. It’s a sign of serious disabling conditions. Apparently, though I know I have those, some part of me can’t get it.

Some of it that yes, it’s final. There’s nothing else I can do, go to, try. That’s pretty scary too. There are still numerous drugs available to me mostly for pain, but there’s little else to be done or tried. I had several years when nothing much changed and that was a relief after the first year when things were crazy – when I was getting fractures out of nowhere for no reason and they were not healing. Then years of “this is the way it is” mostly. There were years when I didn’t see an orthopedist because there’s little he can do – although I had one or two tell me “see me annually” but that was more to check how curved the curvature was and was it changing. Now it’s kicking in with something different almost daily, and nothing can be fixed. All that we can start looking at is as Julie said to make me more comfortable. She said something about me “doing too much” which I didn’t get because I don’t feel like I do SQUAT. But maybe I’m trying too hard to walk – that never occurred to me. When I first got a scooter, my GP worried about osteoporosis and I said I’d walk if she thought I needed to. I’m stuck now. I can’t walk normally and I don’t really give a damn about osteoporosis. It’s one of the few things I don’t have.

I don’t seem to be able to deal with this idea yet. I’m going to try the PT and use that probably as an excuse to stall on deciding anything else. I know – at least in my head – that wheelchairs are enormously freeing and incredibly useful things. In fact, I was taught by wheelchair using friends and co-workers not to say “confined to a wheelchair” because these friends and co-workers were NOT confined, in fact, but wheelchairs freed them up to do things. I know however that I associate power wheelchairs with the toughest of the disabling conditions and situations – paralysis, weakness, inability to walk. Well, I guess I’m coming up on that and while my head might know it, my heart is so not able to deal yet. I have managed this situation for a long time by saying “there will always been something to take or try” and that’s part of my fear; that after this, there won’t be anything else to be tried. Yeah, so?

There’s something more. Since this is now day four and I still have not managed to sneak up on it, I’m going to put this much out there. I’m still having huge issues, apparently, since I still can’t write about it at all well, and I do consider myself relatively articulate, certainly when it comes to talking about disability, which has been something I’ve lived with for 30 plus years. And yet….I seem to be avoiding the heart of the issue or stumbling over it, at the very least and would welcome anything anyone had to say about this.