I’m in a muddle of emotions. I’ve always felt that there’s stuff you know with your HEAD but it doesn’t always get shared by the gut – as I always describe my reaction to earthquakes. My HEAD knows it’s a quake and that it’s a GOOD thing that the building is swaying, but the rest of me is going “MOMMEEEEEEEEE!!! I WANT IT TO STOP NOW!“

I’m aware too that I’m vaguely punishing myself for feeling guilty. And I m feeling guilty because I am, to be trite “conflicted”. Lemme explain.

I was back at the doctor’s yesterday; we agreed that the PT was a damn good thing and that I was still dealing with tendonitis and who the hell knows if that will go away. It may be caused by/be part of the wrecked rotator cuff. It still is keeping me from doing things that hurt but I definitely have my shoulder back to a large degree. I’m still getting used to doing things without wincing – it’s been THAT long since it didn’t hurt to raise my arm. You know that one? I bet most folks do.

I also allowed as how the doctor’s suggestion that I start thinking about using a wheelchair was a big part of my thought processes these weeks. I even found myself on occasion staggering from here to the bedroom thinking “ya know, this woulda been a lot easier if I were sitting down, if I were using a chair.” Just the same, I’m not quite ready to transition, but we did agree to get it started. I’m still having problems even TALKING about this and I’m still very annoyed that when I do, I get teary-eyed, emotional and freaked out. I started writing this on Saturday; on Sunday afternoon, it’s still floating around in my brain, not letting me really concentrate on anything else.

Getting freaked out is VERY annoying to me. I’ve championed the use of wheelchairs since I first worked with folks who used them. I learned, I got it and I respected it – the whole idea that for my friends and co-workers, for my boss and my clients, when it was between chairs and braces/crutches, the chair was far less exhausting and when there wasn’t a choice, it meant, well, having a life. I’ve talked about how getting a scooter freed me from being housebound. So why should it be so hard for ME to start thinking about using a wheelchair.

I’m not ready. It wasn’t time yet. I know that I KNEW that it would happen, but despite living with this crap for a long time, I spent years getting away with using other means. I’ve had some form of disability since, basically, 1972, and in all that time, I’ve continued to walk. It’s been crutches, cane, and scooter. But in the past six months, after the sidetrack issue of my shoulder (you should have surgery. No way you should have surgery. You’re going to have to live with it, it’s not worth the risk. Oh look it’s getting better.) I’m having a great deal more trouble walking. It’s way weird that I can’t walk without CONcentrating, without THINKING it through, without VERY CAREFULLY standing up and then waiting for the reaction, for the twinges, for the uncertainty, for the balance to settle down. I have major problems getting up and moving the first few steps. My body no longer knows quite HOW to do that. This is not from a stroke or anything – my hips are so seriously fucked up that they don’t react the way normal hips react and they can’t DO what I’ve done fro most of my life and what most of you do almost every day, just stand up and go. I get up and I have to wait to see if there will be a ZING of a nerve, if my legs will hold me, if my foot can go in front of the other fot. If I can make it to the walker a few feet away, it gets easier, but it is no longer either natural or automatic that I get up and walk. This is beyond weird. It’s not pleasant, it’s scary and exhausting. It’s like thinking about any number of “automatic” things that most of us take for granted. I know many people deal with this shit every day, but most people in my world just DO stuff often without having to think about it. I don’t anymore. And it’s not the same as the shoulder keeping me from reaching for the soap because it hurt, it just isn’t THERE to smoothly get from a to b.

The walker was a Big change and it took me a while to acknowledge the value of it. I’ve written about hating it and I do because it’s ugly and ungainly. Useful? God yes. Smart of me to start using it? Well, um, YEAH. It provide balance and stability far more than the cane which has not been very helpful for a long time. It shares weight so the shoulder is not under siege as much, and I feel safer about using it – I’m not going to careen into a doorjamb with it. BUT it’s a hassle and has led me to screaming fits of frustration because it gets caught on things, hung UP on things, tangled, doesn’t fit here, can’t go there. It has led me to go at Stu because he didn’t do something we decided should be done so I have hysterics because the fucking walker got CAUGHT again in something. Carpet edges, handles of bags on he floor, books. I’m frustrated and venting about it a LOT. It’s back to the hassles of crutches in a way because you can’t carry stuff. (Yes, I can use a travel mug for my coffee and I do but lately getting the lid off the mug has been enough of a hassle that it doesn’t END there – and I risk getting coffee on me, the bed, the table, those papers because when I finally snap the lid up, well you know where this is going right?)

Because of its width, it’s in the way in the kitchen, which is narrow and if you know our house, you know we have piles and piles of piles everywhere. Hundreds of books, thousands of books, millions and trillions and zillions of books. And not enough bookcases. And boxes of books from the library and stuff I put on the floor because I had to and there isn’t a clear path from here to there so I knock into it with the walker. THAT is getting worked on but it’s still happening. We finally removed the rug from the living room (which has covered over most of the burnt orange carpet since we moved in 17 plus years ago), because the walker got caught on the edge EVERY day and I went into swearing fits. We have had to re-do things, stop doing things of habit because if Stu puts his bag THERE, it will block me from going into the bedroom. If I leave my bag HERE, it will catch a wheel and I can’t get loose. I’m like a trapped animal only lots whinier. I’m having trouble keeping steady, both mentally had physically.

So next week we start the process as I go to consult with the team that helps you figure out/design what sort of wheelchair you need. When I saw this doctor initially she’d said something about how I was doing too much and I’d thought that odd – that I felt like I did very little. So I asked her about that. She said “this is very simplistic but let me put it this way. You’ve only got a finite amount of effort you can get out of your hips. Why use it up now – why not save some for later?” She hastened to say she didn’t really MEAN that about the whole “finite” thing but I assured her I got it. I used to argue with my mother about letting me do things – she wouldn’t and I would argue “If you let me vacuum TODAY, maybe some day when I’m not around, you’ll have saved it up enough that you can do it one more time.” It IS simplistic but it works. Bones do NOT get MORE cooperative, easier to deal with.” I need to stop making things hard on myself. Mind you, I wasn’t really aware I was. I certainly didn’t MEAN to. I stopped trying to be brave and tough a very long time ago. If I’m doing it now, it’s not conscious. Apparently, however, I am doing it. A great part of it comes from laziness. We are not the sort of “put it away the second you take it off” types. I wish we were, but…Some of it comes from being tired when we get home, some is that we just really like our STUFF, and we have lots of STUFF. All too often, I start something and fade halfway through. We accumulate and we’re not big on vacuuming and housework, which would require us to leave more surfaces. I only realize how bad it is usually when someone is coming over. I break out in fits about what a STY this is and look at that TABLE and I get annoyingly bitchy about, well, something I contributed to. It’s not like the slob fairy* came and left her crap here. Wait….or is it??????

It’s not that I should necessarily stop walking – it won’t change things, from what I can tell – the deterioration of the hip bones has nothing to do with what I do, but trying to walk is, in some way, like those friends I had who used crutches and braces. It’s taxing. It’s absolutely more convenient. But see, it’s getting so exhausting it’s seldom worth it.

But I’m sort of embarrassed because here I’ve been saying that wheelchairs are not limiting, not “confining”. That they’re incredibly excellent tools. And yet, I’m upset that I’m getting one. But, quite simply, I wasn’t ready for it to be this year. Things have been so stable for over 10 years. Then in the last year, things really deteriorated, from my left shoulder getting so bad it was difficult to do basic shit like get myself dressed to my right knee, permanently swollen and no one knows why. My walking got more unreliable with me lurching off sideways, and after being on Vicodin was no longer adequate against the chronic pain. I’d been doing less volunteer work, took several months off for LCC and never was able to go back. And I still couldn’t see it, that I was and am apparently really taxing my system. That my very meager schedule still takes too much out of me some days, even when all I’m doing is running errands in the scooter. I know at some level that sitting is horribly bad for me, but I still think at some OTHER level that that is ridiculous and I should sail through the day. I still apparently think I’m getting away with something or that people will think that. I don’t GET myself.

In talking with the doctor, I mentioned also that I’m not as sharp as I once was and didn’t know if that was aging, pain, drugs. I’m sleepier often during the day and every review that I email off to Shaz or Sally or Linda usually has a note that reads “hope it’s coherent” because I no longer trust myself. The doctor thought it was likely due to the meds and I need to decide if it’s worth it. Tough call, isn’t it? I know people who would rather be conscious, so they don’t/can’t take decongestants. I know others who would rather deal with headaches than the fog produced by the painkillers. Jesus that’s brave. I’ve dealt with this for too damn many years and can’t fight it anymore. I’m finding myself testing myself regularly to see if I can still think, if I’m still smart, you know?

I’ve written before about how I hate the fake friendly interactions that people try to establish because of the scooter. I hate the jokes – they are tiresome, they are unoriginal, they are like the stupid-ass comments about weather and basketball offered to the 7 foot person. I don’t CARE that strangers are trying to relate to me. Why should they? Why should I? They would otherwise not talk to me so why do I get to have a conversation with someone who thinks telling me I’ll get a speeding ticket is high humor? Or worse. And I don’t CARE about those folks – usually white-haired, that is, older, who give me saccharine sweet smiles. Why should i? They probably think I’m brave and I don’t really CARE to know what they think. I don’t’ want to hear about god’s blessings either.(the smiles and comments about god often go together.) I tried once to explain to someone why I thought having “greeters” at a department store (Walmart apparently has people at the door who greet you, like they know you or something. I dunno – have never been to a Walmart.) is not “friendly” nor does it enhance my experience. Why should I smile and say hello to a stranger standing at the entrance of a store? I don’t want to. (Do you have those? We get it at a supermarket too – they all have to “greet” customers. It’s really annoying and fake.)

It’s worse with a wheelchair – in part because mostly you don’t get the stupid jokes. But you still get the “jesus loves you” and the sweet smiles that honor your suffering. Or whatEVER the hell it is. And I DO NOT WANT IT. I don’t CARE what strangers think. I’ve heard enough stories about wheelchair users being ignored – it’s way worse than being a scooter user. It’s bad enough when the flaming ushers at Key Arena DECIDE FOR ME where I’m going to sit without ASKING ME, looking at my ticket, or talking to me in any way. In some cases, YES, we’re heading to the accessible section. In other cases NO, I’m sitting in an aisle seat that Linda – incredibly generous woman that she is – is holding for me next to her. No stairs. I can park the scooter and get into a seat. THEY DON’T GET IT. It will be worse in a wheelchair. I will lose even more. I’m already invisible in crowds. Now I can look forward to having no voice either. I’ve talked about the “oh I could use one of those” so-called jokes that able-bodied people use on me all the fucking time. Now instead, I will end up being offered trips to Lourdes, or whatever. Oh, yuck.

I expect the evaluation process for he chair to be interesting. As usual, it would be a lot cooler if it were happening to someone else, but I’ll keep you posted on what it’s like. It will take some time. We have to work on access from the sidewalk to our front door and get back to work on making the house less of a maze.

*Slob fairy – evil twin of the shirt fairy/toilet paper fairy. If you don’t know, ask and I’ll explain.