Posts Tagged ‘rehab’

The ocean bottom is in my garden. Also I can walk

garden

I am crutching in to work every day now and walking pretty well. My right leg gets very tired and my foot goes numb and tingly and painful the more I walk. But it is NOTHING to what it used to be. I’m really happy about that and about the level of walking I’m at. I can put down the crutches and walk around the garden or the house for maybe 15 or 20 minutes. Maybe it’s more like 10. I have not measured. Also I am more confident going through a grocery store just holding onto a cart. I feel firmly in rehab-land and not in the “grimly forcing myself to walk a couple of steps” zone. Let us assign numbers by the Kurtzke Expanded Disability Scale! I think I am at 4.5 – 6.5. That’s huge improvement! It’s been like that for a couple of months. My leg has not completely collapsed under me for … I don’t know… a bit longer than that.

I still have a hard time with the bathroom being far away and with trying to work up the energy to go out to lunch. It’s a long way out to the bathroom and down to the car, on crutches. All I can say is I sit there trying to hold it and then realize that if I sneeze, all is lost, so I’d better get up.

One of the things slowing my rehab is that my left knee is crap. So, it gets strained easily. I do my exercise-bike stuff now and then to try and strengthen it.

I feel like I could probably ride my bike if I got it out, but I’m scared to try and hurt myself and backslide. So, not yet.

Today in the garden I dug in the brick-lined area under the cedars and salvias. At about 4 inches I hit hardpan and for a while began to doubt myself. Was there a brick patio under there? But no – it was just the red, rock-hard decay of serpentinite. I sat there chipping away at the old metamorphosed, messed-up ocean bottom. Go read the article about serpentinite. Isn’t the word “ultramafic” nifty? It’s a silicate that has a lot of magnesium and iron (Ma + Fe, thus the “ma- f” of mafic). What, did you forget I worked in a geology library for like 5 years and read all the time?

You can see the greenness of the serpentinite in the photo above – and the way it’s surrounded by the strange, nutrient-deficient red soil that it decays into. It needs nitrogen and phosphorus really bad, and, well, just everything. That’s why I’m going to mulch the hell out of it and fill it with kitchen scraps! Here they are! Slimy old mac & cheese, strawberry tops, coffee grounds, and apple cores!

garden

and here’s me very happily holding up my joby/gorillapod tripod thing, which I now passionately love!

garden

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Dead dirt

Besides reading and housework I need some excuse to look away from the computer. Now that I’m up and out of bed more, maybe a little garden tending?

I am eyeing spots for compost that is very near my door, and one or two areas also close and easy to water where I can rehabilitate the soil. The long dry season here and the tough rocky soil made from decayed serpentinite combine to make it easy for the dirt to die, in other words, for the worms to leave, the fungi to quit threading their little riots of mycelia, & microbes all dormant so that you could set an apple out in that dirt and nothing would happen to it for weeks.

dead dirt

I used to really like the process of composting, balancing out a compost pile and watching it cook. I produce a steady stream of coffee grounds and eggshells. For leaves we could shred paper. It would be good to have a little pile of dirt and leaves to start with or a trench for burying stuff.

Though the goal is to get myself off the computer and into the physical world, god knows if I don’t blog it I might not stick with it and even then… it’s chancy.

My other project is to get rid of books. I thought that I could start by blogging brief notes on a bunch of heavy literary theory books, so that I remember what I had and read and knew and could find it again if I wanted. Then it won’t be so painful to give away the books.

Fixing broken things, making bare dirt turn fertile with weeds or fruit, nursing half-dead houseplants thrown away in the trash, all those things give me particular pleasure. Then later the triumph over deadness of running my fingers through the soil, easy home for worms, made from waste and trash. It’s like shaking my fist at the world. It brings out all my stubbornness.

I stayed home from Naomi Novik’s reading at Borderlands – last few readings there were so crowded and I couldn’t take it in the wheelchair in a crowd after this weekend! I am sure she was lovely – I will write a review of Victory of Eagles to make up for not going.

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We interrupt this getting-better interlude to bring you pain


disabled parking spot painted over
Originally uploaded by Liz.

I grieve all over again every time I get 3 steps better and get 2 steps worse. It is a struggle to adjust to the situation.

Saturday night something just went all wrong again. I walked so much last week and pushed myself through some increasing pain, the nerve-pain feeling, figuring that I was walking so well and felt so much stronger, it was the right thing to do. I have been doing all sorts of leg and foot exercises while sitting, and leg lifts twice a day. I was even doing a few steps of staircases without cane or crutches, just hanging on to the handrail. It was a free light splendid feeling, getting up from bed whenever I liked, bustling around, being at that party *standing up talking with people*. Now I am back to struggling to deal with daily life and back on crutches to do any little thing. My right leg can’t support my weight without too much pain for me to take. Lying here in bed, I am feeling so crazed with pain. So the last 2 nights and now tonight, Vicodin. (Last night around 9? Tonight, too – I try to hold out until Moomin’s bed time for some reason.) My leg – doing that thing it does. It is like spikey things are inside the small of my back gnawing their way out and also it feels like rubber bands gone too tight and strained. It is like needle stabs and itching deep in there in my haunches, and like fire in my hip and the stripe down my thigh, my calf and ankle, and also crawling ants in my foot. Any breath of air or breeze is like being tortured with fiery ice cubes. I swear. You see how around 6pm I kind of start looking forward to that painkiller. The tylenol and advil are not cutting it.

I cried last night when i realized i could not put on my sock and had to ask for help. I know, I know, it is okay to ask for help, no one minds, and once I’m there, that’s where I am and I do adjust. The transition is very hard. A little bit of privacy and self determination about the tiny things, it is hard to put aside.

Did I fuck up? Did I go too fast? And walk too much? When I start to feel like I can do more, I feel like a fraud, and lazy, if I don’t keep trying. I can’t even know what I did, or if it was something I did or a random fluctuation. The hard part is not knowing what is going to happen. Is this going to be a minor blip I will laugh at in a couple of days? Or am I heading for a longer time of feeling like hell? If so then I will just have to manage it better than last year.

I feel ashamed, and then ashamed of feeling ashamed. You wouldn’t think any of that would go on in my head, but it does, and I can’t help writing about it.

I just slipped from a range of maybe 4.2 – 6.7, to a range of maybe 6.5 to 7.2. I can handle being worse of course but I would so rather not. Right now I shoudl have my wheelchair in the house but I am stubbornly not. BAH.

Other than that, and my underlying emotional reaction, I had a really lovely weekend. Hung out in bed with computers. Vaguely herded the local flock of children. Mostly I wrote, and read and re-read and took notes on the Marq’ssan Cycle.

And, I had an okay day at work, fooling around and setting things up for testing and pestering people. Pain was not bad till around 3pm. Tomorrow, meetings and then linux server install. I will need to lie down a good bit of time whenever I can. Must remember to bring a decent pillow. Can I do this? Am I being dumb?

I wish this had happened after my trip and not before because I really wanted to be on, and sparkly, and have fun, and talk to everyone, after last year when I just remember being a giant bitch all the time. Also, I act like I am brave about traveling, but actually, the more I do it the more I know how hard it is. But I am determined on it. I resolve to rest sometimes, and ask for help whenever I do need it instead of trying to tough it out.

Oh and this all makes me really glad that I pushed forward on my situation at my work building with parking. Somehow. Anyway, I just had to.

I got to the part in Stretto where Alexandra is broken and in bed and tormented by feeling greasy and trapped and oh, I know the feeling as do many of you. Some of the stuff about rehab seemed pretty good but other bits like how she just keeps working and doing the things the PT tells her to and it’s painful but she gets better, well, I have my doubts there! Still I did oddly feel comforted by Alexandra wheelchairing around and struggling with stairs on her island. There I was, a little, with my damage.

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Road trip north!

Mountains that look like volcanoes, covered in snow! Lots of tantalizing roadcuts that we have whooshed past! We got on 101 at Cesar Chavez at 10am. It’s 7:30 now, coming up on Eugene, Oregon. All three of us have to stop about once an hour to pee, which has been extremely pleasant; no one is impatient with anyone else’s bladder. We have healthy food and chocolate from Sarah’s shopping trip and yet chips, sodas, ice cream, beef jerky, ends up in our pockets.

We had lunch at Big D’s BBQ/ Silva’s Restaurant in South Weed, right under Mt. Shasta – sat on a deck outside in the sun & gawked at mountains & devoured the best bbq sandwiches. I highly recommend their coleslaw and potato salad. The sandwiches were on perfectly soft giant buns slathered with garlic butter, toasted, then mayo & lettuce and tomato… *drools in memory*

Everything has gone green! After the pass coming down into Oregon, no more sagebrush and scrub.

I saw some columnar basalt, a lot of mudstone and sandstone layers, something I think was a giant roadcut of ash (as it looked a lot like the painted desert and it was right before we got to Ashland), some stuff to the west that looked granitic (in how it was weathering). Maybe on the way back I’ll stop and look a few times. When we pass a roadcut or some bare rock I get so excited like my cats get when they see a toy mouse.

We are pushing on to Portland tonight so that tomorrow there is only a little to do – that way we can rest.

I need that rest as I started out loping along with only a tiny bit of help from crutches. By now though I am in some pain and limping a lot. Next stop I might need the chair.

I talked with my mom and my grandma rallied a bit & is back in rehab. She was in the hospital with a possible TIA and pneumonia, then out again to rehab sort of place, then last night they couldn’t wake her up and brought her back to the hospital and my mom was very upset & thought she was dying. She might be. She sounds really confused. They have had trouble feeding her. It sounds really tough. My mom is being really brave and a good advocate.

My throat is still horrible. Not scratchy but it seems very swollen. Zond-7 has a cold too and also had a root canal yesterday and was jet lagged and just ill in every way. We ordered pho and went to bed at about 9:30, whimpering with the unfairness of it all but very comforted by the soup and cosy bed. Though, a horrible awakening at 6am as his roommate’s dog got into the house and for some reason shit all over the carpet by the bed so his roommate helped us take up the giant carpet (which was half-pinned underneath the bed) It turned out the dog had kind of lost control various other places so she is probably sick… From there everything went uphill as Zond-7′s fever had broken and I felt perky and good. Coffee, some cheery early-morning reading of Ubik, email check & I was off to get Sarah and cindymonkey. We are enjoying each others’ stories & music.

This is all a bit flat as I’m so tired now!

Earlier I was very excited because of the gorgeous mountains!

At various points in rural highway California we were all eyed in a friendly way at gas stations by cute women, definitely checked out by the check-out girls. OH HAI we are the city freaks! But in Oregon as we neared Grants Pass cindymonkey told us about this one time she was near there at a gas station bathroom and there was a giant obvious group marriage of women in old fashioned dresses giving her dirty looks. She was waiting in line for the bathroom. & one of them came out and gave her an evil-sweet smile and when cindy went in she realized the woman had covered the bathroom in poo like all over everything. (How, in one of those long dresses!?)

My plan tonight is a motel somehwere or Sarah’s friend might find us a hotel. I think they all will go out drinking if we can find a motel at a truck stop with food and a Trucker Saloon, while I gracefully fall onto a motel fainting couch with Vicodin by my side.

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The absence of fear

Last night after decompressing, thinking, processing, talking, and then this morning waking up, I noticed that now when I feel pain, it doesn’t come with a huge dose of fear that I have to struggle to overcome just to stay functioning & sane. I don’t feel the pain and immediately cascade into “Oh my god i am getting worse and degenerating and I don’t understand what’s happening to me and it’s out of my control” combined with a terrified projection of the future. What a huge relief, what a huge weight off me.

Also as I enjoy things, or think about everyone I love, I’m not feeling what I’ve been feeling these last couple of months, a slightly different combination of fear and horror that they will see me painfully degenerate and lose my independence and our relationships will change into my being more and more needy and dependent on them; also with a deep undercurrent of “goodbye to this good moment that I’m enjoying, whatever it is.” I think of the terrible moment when I was holding my nephew on my lap and Minnie was feeding him baby food with a spoon. And underneath the enjoyment of that moment was a very strong horrible thought: “And my hands will go, and there will be times when she’ll feed me like this; and that will come to be normal to us, no matter how difficult it seems now; and I will adapt to, because I’ll have to; but I won’t even share this thought, because it will upset her and everyone else.” And having to mix all that up and come out with acceptance and some kind of way of Dealing With It All and plans for the future. I can deal with this! It’s just another Thing! I can do anything! Complicated attempt to protect everyone else by being the bravest and not showing how lost I am for as much of the time as I can manage. Guilt when I can’t manage. Frantic tears underlying every bit of happiness. A feeling of dishonesty whenever I’m not curled up in fetal position crying in fear. But that’s no way to live. Impossible alchemy! Constant terrible stress and internal scrambling!

Not doing that is an enormous relief.

I look at my own legs… as they hurt… and as I lie there in bed… and I don’t feel so afraid, and so complicated and sad.

I spent the last 2 months reading everything I could about PLS and ALS and MS and HSP, about speech therapy and swallowing and PT and other people’s progression patterns and the research and clinical studies. I firmly believe that was the right thing for me to be doing; I had this diagnosis and I think it is up to a person to learn everything about their condition. I can’t grasp what’s happening, or make decisions, without good depth of information. So that’s what I was doing!

But now I need to unhinge myself from knowing, and having some kind of certainty. I will just think of it like I used to; that something is fucked up in my back, or something, and through whatever complex cascade of adaptation, compensation, and failures, a bunch of my body is messed up. And I will gradually correct those things through trial and error and effort.

I’m trying to catapult myself back to a mindset where I *can* have some control. I’m thinking hard about gait. I’m trying not to overprotect, which I know I do with limping out of fear that I’m about to set off horrible spasms and pain. So at times I’m not walking, or am limping, out of actual pain and inability and at times out of habit or protection.

What to fight? And what to accept, and adapt to? It’s very difficult. I don’t… and can’t… always get it right.

I think about the last month or so and my increasing feeling of panic and weakness and my arm troubles — and I *am* inclined to blame the ever-increasing doses of baclofen 3 times a day. It was harder to crutch and to push myself in the chair, and harder to keep my arms up to drive. I took my last baclofen what… 2 days ago. I felt a lot of relief when I made that decision to make a test and to eliminate a factor that was outside of my control, that I didn’t understand; I couldn’t tell if it was hurting or helping, or helping one thing and hurting me worse in other areas. I couldn’t tell if I was degenerating with horrible rapidity (which is what it felt like) or having side effects, so I resolved to stop the meds. Let’s see if that horrible feeling of weakness improves.

So, I need to go back to a mindset where I try and work harder on physical rehab goals, how I was in September and October. I’ll work on gait. I will try to stop using the wheelchair in the house. Also, I will try to work sitting up more, at my desk, and less in bed.

Balanced with that, if I go too far or if I feel worse, I need to NOT BLAME MYSELF or beat myself up.

Once I have no wheelchair in the house, for a month, and am using cane more often than crutches, I can reassess where I’m at, and make new goals. The weather will get warmer, and that will make everything easier again.

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Undiagnosis

This has been a very odd day. I’ve been in the ALS clinic from 8am to 2pm. Am very tired and emotionally wound up. I had a short EMG. The neuro there doesn’t think I have PLS or ALS at all but ended up diagnosing me with a generic gait disorder and instructions to do very good PT and pain management and drink quinine/tonic water for spasms. Treat symptoms and keep trying, till we figure out what it is. Maybe think of it as a spine thing which has left its aftermath but which (like in the 90s) I will get better from (but faster this time, with better care and physical therapy — which is what I was thinking this spring and summer.)

So today’s undiagnosis is like a reprieve from the firing squad — no degeneration or “progression”, but also no real answers. I’m hugely relieved, well, partly, because I have trouble figuring out whether to trust this or not no matter how much I’d like to, but I’m relieved to try to set aside fears of feeding tubes and dying on ventilators.

The actual process was rough. I talked with a super nice resident for what seemed like over an hour to do the entire history and go over my charts from Neurologist Capybara, with some exam thrown in. Then… time passes. Time passes. Time passes. Dr. Hestia came in and got me to undress and did neuro exam things and I pushed painfully as best I could in every direction… as always. During this she said I’d have to go get an EMG next and I freaked and started crying and from there it just got worse. Parts of the EMG were okay and parts of them were excruciating but at least it was quick. It ended up in the worst possible place with me crying and screaming please take the needle out. How embarrassing… I swear, I’m not usually like that and I’m very damn tough! But also by that time I was in pain and freezing cold. They wheeled me back to the other exam room and left me there crying… Damn… I freaked a bit because I couldn’t get my clothes on because my hand where they stuck the needle in was cramping. (It’s mostly better now but I can’t turn a doorknob or a faucet with it.) I couldn’t untie the gown thing in the back. I know half of it was just being scared. So as more time passed I realized I couldn’t quite get dressed and I had to pee but I couldn’t wheel myself to the bathroom and I didnt know when anyone was coming back. I panicked and started calling people. Zond-7 came in a taxi a while later. by that time I had pulled myself together, gotten dressed, and the doctor was there telling me stuff. I wasn’t sure if I was going to be able to drive or not but then felt like I could. My hand uncramped and I stopped panicking.

Z. gave me a very useful intelligent talk afterwards as I cried in relief and general shock (saying that then what is it… and is it all my fault and they’re just telling me to work harder?). He said that a) he doesn’t think and they don’t think and I shouldn’t think I am making stuff up b) what is the worst case? that I am just kind of neurotic or crazy ; but that even if I am it’s not my fault and there should not be a stigma attached to that. I hope he’ll say all of that again because it kind of filtered through and calmed me down, but I can’t remember it all.

So what is going on then? I am wondering really hard. Was the first neurologist just prone to see a vague likelihood and then he convinced himself and me? I believed it… completely. And there was no question in my mind before today that I had PLS; I was afraid it would actually turn out to be ALS.

In October I thought I was getting better, and even started wondering if getting the ramps put in on my street would turn out to be not useful for me because surely I’d be out of the wheelchair by winter. The nerve conduction study messed me up a lot, and then I went right onto Lyrica which made me much worse & very weak and put me squarely back in the wheelchair and not knowing how to get out. Then, off Lyrica (at my insistence) and onto baclofen (at neurologist Capybara’s suggestion, but at a much lower dose than he wanted.) And maybe since then the baclofen has been also making problems worse and not better? Maybe … despite what I felt I was trying… maybe the diagnosis made me stop trying so hard and did send me into a bit of neurotic tailspin.

That’s all I can think of. I’m very relieved as I said to not be so afraid of the near future. It’s disconcerting to have my reality shift completely in just a few hours.

Back to looking at my neck and its arthritis-ish and disc things? Or what? I’ll just do whatever PT gets thrown at me in good faith, I guess. I don’t know what to think. The feeling of “it fits” about PLS must just be that human impulse to correlate and see patterns… like the way reading the description of any astrological sign feels like it might be you… But at least it’s not like I made it up or chose it; the neurologist was increasingly definite about it over many visits, so I believed it… and reading seemed to confirm everything but my years of improvement.

The PT referral asks for a home safety evaluation, range of motion passive exercises with teaching family members to do that stuff with me, stretches for family to help me with, and help with rehab/transfer techniques (which I will take gratefully having never had that kind of help and making it up and figuring it out myself.)

I’ll go back to Dr. Capybara and will set up physical therapy at Staffnord as soon as I can… On some level I’m afraid to trust this un-diagnosis. What if I un-believe it, and feel all the relief, and then have to find out later that it’s true after all? Also, on top of being extremely confused and disconcerted and an emotional dishrag…. I’m angry… at all this… and embarrassed.

What if the first neurologist just set me up with the closest possible mystery ailment, to keep me coming back every few weeks, a perfect cash cow? He did discourage me a couple of times from doing further tests at Staffnord saying that it woudl be redundant and they would just physically torture me more for data, for no point other than to confirm what we already knew, and pinpointing the diagnosis wouldn’t change what we tried for treatment anyway and I should continue with PT and messing with meds (and trying botox on the big muscle in my legs.) What if he’s unscrupulous and basically made this up and I bought into it? 8-( Not a nice thought.

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Squeaky wheels

IN the last few days I had a very peaceful relaxing time, read, took notes on The Orphan’s Tales, played a lot with Squeak and eToys images (the Smalltalk based stuff that runs the OLPC), eaten leftovers, blogged rantily in private and wrote stormy emails I’ll never send (to and about my in-laws) and puttered about with kids and presents. Squeak dazzled me for a while and I still feel its pull and yes, it sucked me instantly because I love flailing around to investigate programming environments like that. I tried for like 6 hours to put moving eyes on a BlobMorph. Then looked up and realized that not only did I still not know how to do it, but if I did, it would be awfully useless, no matter how much fun I have along the way. Anyway, probably better to go back to Python and the fun of pair programming with that…

Zond-7 got me SpokePOV kit, better than hokeyspokes but will be a couple of days of electronics project for us to really do; we talked about ideas with wireless or bluetooth so that you could text your wheels… and ways to bling out my exoskeleton/chassis with gumstix (tiny tiny linux boxes) and things like that. I am walking limpily around the house sometimes without crutches but then my leg seizes up again.

I went to the neurologist today again and we had some more open talk about things, which was very good and interesting but also very difficult. Each time i feel like I am swimming more and more bravely into it. He talked frankly about going to the clinic and about how he thinks als/pls was a spectrum really and basically i should not freak or be surprised if I “flunk” my emg and get reclassified as ALS since clearly everything is long developing. He was strongly encouraging me to up the oral baclofen a bit faster and thinks that it will control my spasticity and thus I’ll be walking much better again. We talked about the years of recovery and then of walking much better, and he said the clinic will be interested and will also know more about that, but he thinks that it is that there is scarring (the “sclerosis” but that mine is still fairly minimal, and that is why it is so much better when the spasticity calms down. and the long gradual recovery kind of a long rehab path or gaining strength without triggering off nasty spasms. We talked more frankly as well about swallowing problems. I showed off by going in on my forearm crutches. Now I’m hurting. It is harder to do everything in the cold.

I am doing the bicycle thing for PT (a small set of pedals with no resistance on a low frame that fits under a regular chair). it hurts. I am a bit eager for the spring assist ankle-foot orthosis which sounds like it will hold me foot in position. The neurologist also talked about how spasticity works and for example that my gait is sucking because of spastic hip muscles (i forget what he said about extensor and flexor… doh!) and that the muscles in my tibia/shin are contracting but so are the back ones in my calf and guess which one is stronger and about 4 times as big – the calf – so that side wins and my foot gets pulled downward, and my tibial muscles are fighting with it every time I need to flex my foot upwards.

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Mean people suck, so I’ll rant at them

I spent the morning being angry, which was no fun. Then I went to the rehab pool, which is hard work. I got dressed. Rook loaded me up into the care, and then I drove by myself trying to feel happy about being independent.

There are people who take pleasure in petty power. You find them behind desks, smug & obtuse. This guy was trying to make me mad by making me wait. And he was doing it to everyone else there too. To old ladies balancing on quad canes so bent over they could hardly lift their heads to see ahead of them. What is the point? Looking everywhere but at the people waiting. Ignoring all the people who were politely trying to just check in and go use the pool or who had a simple question. Finally it was my turn. And believe me I show no impatience in those situations and am extremely polite; but the guy who was there after me had made subtle eye contact with me and there was an obvious body language thing where I backed up to let him go first because he was in more difficulty. It was clear it was a huge effort for him to lift up his arm with the pool check-in card, and the guy behind the desk just ignored his request and dithered around and then deliberately cold shouldered him to turn to me. I told him to help the other guy first. The guy behind the desk acted angry. OMG! Horrible. I realized he was doing that thing that people do when they know very well that you need what they have, and you’ll have to ask them for help. That sort of person takes pleasure in being frustrating and cruel, and making you mad, then watching you be humiliated at having to ask for things, unable to express your anger.

I don’t understand it.

Anyway this random dude was hating on me and I was hating on him and trying to keep my temper. Then I came out of the locker room and realized he was now on shift as the lifeguard. And he was nasty to me again pointlessly. Then when I had to get out he was there smirking to help me. Smirking!

It was so petty, and so meaningless. But those things happen all the time. People sometimes help you out of meanness, to make you feel small. They add an extra kick as they throw you a penny.

It was a bit like Widmerpool suddenly being head of the War Office, and Jenkins realizing he had the power of life and death over everyone they knew to assign them to deadly war zones vs. desk jobs, and Widmerpool’s obvious pleasure in that, very much in miniature.

Normally I’m good about pointing out something like that bluntly and with some humor attached. Today I just clung to the side of the pool and bicycled my legs quietly and painfully as I looked around at the pool full of old people I was in there with and thought about all the shit they take.

All my fury, all my fierce entitlement, the good kind of it that believes all of us get to be treated like human beings, am I going to lose that? And learn to swallow it? Like they do?

Because I’ll have to?

I don’t think so. Instead I resolve to not take any bullshit.

There in the pool I thought of the way Medicare doesn’t pay for wheelchairs that are “intended for use outside of the home” thus dooming thousands and thousands of people who believed in “independent living” to a life of house arrest. Filled with rage… I bicycled my legs and looked out the window at the kids playing soccer in the fields outside and the gorgeous blue sky and the maple leaves blazed against everything, and thought of how things were in the Astrodome and realized I have to call on that sort of strength in myself to deal with people in my daily life.

There are kind people everywhere, people who work in hospitals and bring you warm blankets and seem conscious that such a simple act could alleviate real suffering. And then there are people who leave you lying naked in cold rooms on metal tables, with your wheelchair pushed out of the way and out of reach across the room, and the door shut, while they order tests or check with medical records or look for a file, and who act angry with you in advance to quash any expectation you might have of being treated decently, people who are having a shitty time and who take it out on others.

I like to think that no matter what kind of bad day I’m having I would choose to be the first kind of person. Also, that as in the Astrodome, behaving decently towards people and insisting on being treated decently yourself, spreads like ripples of sanity and helps everyone.

Silently enduring bad treatment only sets a bad example to everyone else around you, not just the people who should be told off, but the other people being treated badly. I think of how I went off on this woman at a bus stop once when she was pinching her little kid’s inside of the arm black and blue and I realized how futile yelling at her would be but did it anyway because the kid would get that voice of outside validation that abuse wasn’t okay.

I wrote all the letters of the alphabet in the water with my right leg, and thought of people get old and disabled and sick and don’t know how to speak up for themselves, in little situations or big ones, and how silence and shame conspire to kill people body & soul.

Oh also I’m so totally pms-ing that it’s not even funny.

Bring me the megaphone, and some chocolate, and I’ll conquer the world from bed, okay?

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In rehab, with a flowered bathing suit

I didn’t want Rook to go in with me to the swimming pool, just as yesterday at the wheelchair store I didn’t, because I couldn’t bear to be so obviously non-independent. Which is a little silly since I’m not independent right now. The other part of it that I didn’t tell him was that I didn’t want him to see the level of disability I really have. He sees me in the house going pretty competently from wheelchair to bed and back and I can get things for myself and get around. But I didn’t want him to be upset seeing what was going to happen at the pool, because I wasn’t sure how I was going to get in the water.

The locker room was crowded with very nice older women who all seemed to be ancient, twinkly-eyed, observant, hunchy, slow-moving as if in pain, and wearing wildly flowery bathing suits that more and more as I get older seem like flamboyant witty outrageousness rather than funny oldfashionedness. My bathing suit is also wildly flowery, in pink and orange.

I got into my suit. I was supposed to shower but didn’t, because I realized I couldn’t stand up and there was only one bench to sit on and a caregiver was showering a very ancient chick in a pool chair in front of it and they were taking forEVER. I went out and surveyed the situation. I used to be able to get into the pool walking with the double handrails down very shallow steps. Those stairs go for about 20 feet sloping gently into the shallow end. But, I knew I couldn’t do that today. My arms are good for transferring but not holding up my full weight for that far.

So I transferred to one of the pool chairs, which are like PVC lawn chairs with wheelchair wheels and brakes and rims. The pool chair was very heavy so I decided to hell with going back to the shower. The ramp looked a bit scary, suddenly. Would I slip? Could I control going into the water? What would happen? I’ve never done it! And then, the chair would just be there in the water! No one around me was really uncrippled enough to ask to push me in. They were all totally decrepit or else also in chairs. So, I transferred back into my own chair and went up to the handrail stairs. I can do a floor to chair transfer — I did it for the first time the other day at the park with Zond-7 and Jo. So, picture me flooping myself out of the chair like Sophie the Seal in Dr. Doolittle’s Circus sliding down in the coach. (There is a reference for you, Iris? or who else?) On the steps I could scooch down slowly with my legs sort of vaguely under control. Once I got in to waist deep while sitting, it was easy.

Sort of easy. My legs started spasming like crazy and my low and mid back too and i thought I was going to throw up. I just clutched onto a pool noodle and paddled out a bit deeper, then clung to the side and tried to stretch my hamstrings and the backs of my thighs and the front of my hips and stomach. It was all so crazy. On some level a relief. But at the same time, incredibly painful. Thanks to the Lyrica I had very minimal nerve-stripey burning and shooting pain. It was more like just tingling. It made it very clear what is pain from spasticity and what isn’t! How strange!

A very nice physical therapist came up and gave me a sort of floating neck pillow with a strap. While I hate to buckle anything around my neck, this pillow really rocked. There was also a buoyant belt with a strap. It was difficult to put on, but I managed.

I realized my leg was super messed up. More than I thought. I worked on it a lot. Mostly just moving it gently in all directions. Hard work though.

Talked with a chick with a brace and a brain tumor, and Maul who I think has MS but I”ve forgotten and who was in a Ti-Lite and walking maybe steps but now is in a power chair with feather boa. I like her. I think everyone must. Maul projects Fierce Good Cheer and Indomitable Will in a forcefield about a mile square. In the locker room she yelled out that she wished socks would jump onto one’s feet. I answered from my curtained cubicle that instead we will genetically engineer pet socks that love to crawl onto us like surrounding caterpillars. “And all the rest of our clothes too while you’re at it!” she yelled back. Some flowered suits in adjoining cubes were audibly amused. I felt like a new courtier accidentally pleasing the Queen.

Anyway, getting out was daunting. I studied the situation again. A lot of people were out of the pool having a potluck dinner and I felt like they would all be seeing me fuck up getting out of the pool. But… oh well since I had to pee and there was no way I was going to be in this guy’s situation and, you know, “get my coat”, it was TIME TO GET OUT. I started scooching up the long long steps like a pain-addled seal, but this time there was a lifeguard, a cute dude who earlier in the language of knowledgeable cripples had asked me simply, “Motorcycle?” (I said no but did not explain.)

The lifeguard asked if I would like the pool chair. I hesitated for a second or two in reflex “NO I DON’T NEED ANY HELP THANKS” and said yes. So he chucked it in, backwards, and it rolled down to the bottom of the ramp. I got in. Getting up the ramp was too hard so he just reached over and shoved me about halfway. Closer to the top I managed & then got into the shower and the bathroom and out again (freezing) to my real chair and my towels.

I am glad of everyone’s help today. Thank you minnie and rook and zond-7 and Squid.

I also feel glad that Rook started dating me while I was clearly somewhat disabled mysteriously and using a cane and that Zond-7 also started dating me while I was using a chair. I mean, they’re both filthy perverted gimp-chasers. But the point is I know it is not like a HUGE SURPRISE and neither of them is like ACK OH NO GIRLFRIEND IN A WHEELCHAIR. So I feel a bit more trusting and like I have to protect them less. However, I think that both of them could use a little emotional support around it. It is stressful, they are doing a lot, they are emotionally supporting me and also a lot of practical help, and I can see the stress of worrying about me affecting them though they’re both tough. Oh, also, I realize what I said in the first paragraph of this post is retarded, but I can’t help it. I want to protect people. I feel very tender towards everyone and I wish I could spare them somehow. Obviously though, Rook knows perfectly well I am perturbingly disabled at the moment and it’s not like I’m fooling him. It is perhaps more that I want to look like I have smooth mastery of the situation before he goes into the pool with me. Zond-7 I can bear to fuck up in front of a bit more because it more makes him laugh. Another thought. I am truly happy. No lie, I feel like a lucky person and I am lucky to not only have such love but to be so brave and tough and yet willing to face up as I am. Here is another thought I find floating up to the surface – think how good that upper incomplete spinal cord injury looks now! Ha! It is a bit funny. It upset me so and now I would really like for it to be true rather than this. On the other hand, if it turns out to be PLS, that is way better than ALS, where you die quicker from it and can lose your mind. It is also in some ways maybe preferable to MS since I have not seen that you go blind from it like you can with MS and I am scared to be blind. I am also scared of losing my hand functioning but I’m trying to find things to comfort me.

The third thing is that since last week I am markedly stammering especially under any stress. It is very odd. I am like watching myself do it and I can’t do anything about it. I don’t know if it is the mystery thing that might be PLS, or the Lyrica, or both. I think maybe both as the Lyrica seems to uncover one thing while covering another. It masks the nerve pain but then spasticity either goes wild, or I am more aware of it. In the last 6 months I have noticed not being able to be as clear speaking as I would like but I have put that off to being tired and in pain. How odd that it is now a Symptom and Side Effect both. I thought some thoughts full of pathos about being a poet who then gets a stammer. Oh well. Mostly it was harsh to see the look on the woman’s face at the swim center desk as she assessed me and was thinking “oh, neuro” I tried to make my questions come out fluidly and they wouldn’t. I am tempted to go off the Lyrica completely, but will give it another week or 2.

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Re-diagnosis, more so

Well now the neurologist has all the tests from my other doctors and my giant 6 page letter of random-seeming symptoms over the last umpteen years and he is certain about PLS which is scary but not as scary as ALS since you don’t die so quick from what I remember of some late night neurotic googling of maybe last week or so . The neuro is mad at some fo the other doctors for their attitude and not doing anything and not catching some things.

I have picked out a Quickie TI with minimal camber, a narrow (22 or 23 inch?) width and untapered footrest. It is plain but I’ll bling it up. I will try to not wig too hard, though I am, and they will be MRI-ing my brain and upper spine to confirm or whatever, and then we’ll see. But, I can’t quite believe anything anymore until there is some kind of proof I understand. Just so you know. PLS. Huh.

Off to gloat over tiny clothing bought with my sister at Savers (best thrift store ever) as she got me from the wheelchair appt. and brought me to the doctor.

I get a home health visit and all the rehab crap I want in my house to accessible it up. And you know, the thing people do about when you are ina w heelchair, and then that went sort of over the top with the thought of spinal injury, whoa boy I saw my doctor (who is awesome and nice, nicest ever) go from like puttering along at 25mph of sympathetic kindness to like Mach 3. If I need anything signed, or need anything at all, dont worry about bothering her or the neuro, call any time and they will help me out.

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