If I’d been told five years ago what ALS was, and been allowed to do as much research as I like, and then been asked to write down everything I thought might be a problem for someone with the disease, I’d still have gotten most of it wrong.
That’s part of why I made this blog, I guess. To track those things. Even things I probably would have mentioned, I would not have gotten completely right. I am very, very lucky that I am not the first person with this disease, and so every little one of these little problems that have come up almost always has a solution. And usually? Even a marketed product to fix it. A law to address it. Something.
For example! I have no strength in my feet. That’s a duh observation. But one of the unexpected consequences of that fact is that at night, the weight of the blankets simply resting on top of them becomes painful. The weight of the blankets push my feet down so my toes curl and my heels dig into the mattress. When you have strength in your toes you don’t even register the weight. When your feet are useless, you can actually get bedsores on your ankles and heels just from that little bit of weight. So now you know!
Luckily, folks have had this problem addressed before. One answer is a kind of cushiony boot that you wear to bed, to give your ankles extra cushion. But the BETTER solution is something called a bed cradle – a C shaped frame that slips under your mattress and keeps the covers up off your feet. It’s also awesome for cats to lean against, apparently.
(there will be a cute pic of my cats leaning against the bed cradle here as soon as my site stops being a shit head and lets me upload)
I love this thing.
One thing that ABSOLUTELY occurred to me as a need, however, was the need for a bathroom with bars and enough space to get a wheelchair in. It’s a no-brainer. And yet. AND YET. So many places get it wrong. I …hold on, before I get into this rant, I’ma look up what the legal requirements are. If i were a benevolent dictator, everyone who owns a public place would have to do a day in a wheelchair to get a feel for it and see what the hell people have to deal with, so they could visualize how best to build a proper fucking bathroom. And I know there are absolutely the kind of assholes who comply with the absolute letter of the ADA law but to the point of practical uselessness. I suspect that is the case for the Lake Oswego Stanford’s restaurant, which I’m about to rant about in a second. I am calling them out specifically here because we went there for Thanksgiving, and my experience with their toilet was so goddamned frustrating it verrrrrrrrrrrrry nearly ruined my day because I almost had to call J to come rescue me.
…hoooboy yah that stall was NOT compliant. OK so here is the photo I took of myself sitting on the toilet, in preparation for sending it to J by way of explanation why I needed him to come get me.
(there will be a pic of the bathroom stall here as soon as my site stops being a shit head and lets me upload)
My wheelchair is backed all the fuck back against the door. The foot rests on my wheelchair had to be folded up to get my chair in all the way so I could close the door. My knees are apart because there is literally three inches between the edge of my chair and the toilet bowl. On the one side of the stall is a very flimsy wooden partition and no grab bar. On the other wall? A grab bar AND THE FUCKING DIAPER CHANGE STATION MOUNTED ONE INCH ABOVE IT. The bar was rendered completely fucking useless because of that goddamned thing. There was another bar along the back wall, mounted one inch above the toilet tank.
RESTAURANTS AND OTHERS, Y U DO DIS
I should have not bothered, but I really had to go, so I managed to maneuver the chair in at an angle. I was able to get out of the chair thanks to its seat tilt function, but A GRAB BAR ON THAT WALL WOULD HAVE BEEN FUCKING NICE. Using the bar against the back wall I was able to pull myself forward to lean against the back wall to undress. Then carefully lower myself down, because I couldn’t even lean on that non-bar wall for support (see: flimsy-ass wooden partition). The toilet was lower than my chair, and the instant I sat down I knew I was not going to be able to get back up with any sort of ease.
I finished up and took a long time to figure out how the fuck I was going to get back up. Long enough that J was sending me a text to ask if I was okay, but I was already planning on what I was going to say to him to explain I was going to need his help to get out. Meanwhile the bathroom was suddenly full of women, there was a line for the two stalls, including one woman saying she couldn’t use the other stall because she needed the bars. I almost called out to her that the handicap stall wasn’t going to be of any use to her.
After some consideration, I wound up having to lift my leg to it sidesaddle on the toilet, swivel my bare ass on to my wheelchair from the toilet, then lift myself up from there to pull my underwear back up and my skirt down. When I sat back down, I was out of breath. Humiliated. And then had to open the stall door and do a six point turn in a crowded goddamned bathroom to get to the sink while being stared at by a line of ladies. The woman who needed the stall had to wait for me to wait for both sinks to be clear, because the handicap stall door opened almost against the sink and I had to be completely out of its way to let the door close. Which meant once she was in there and the door closed, I effectively trapped her in there with my chair while I went back up to the sink to wash my hands. I’d wanted to take a picture of the stall with the fucking diaper station obstructing the bar, but there was a very long line waiting for that toilet.
I’m simply saying that Stanford’s was really lucky their pumpkin cheesecake was delicious because I might have burned the fucking place down after that.
As it is, now that I’ve seen the legal requirements and know goddamned well they are not in compliance, I’m proooooooooolly gonna lodge a formal goddamned complaint. We like to go there for family gatherings, but I’d never had to use the bathroom before. I’ve sometimes thought about starting a sideblog for really terrible public toilets and why they are not useful for actual ADA people, but I think it would just be supremely rage inducing for me and no one would give a shit who had any power to change it.
So instead I rant here in slightly TMI tones for y’all folks to read about. You’re welcome.
My bed cradle is still fucking awesome though.