Being disabled is damnably inconvenient. Let me explain. I use a power wheelchair, and I wear a protective brace on my left lower leg, which has a significant curvature and has already broken twice in the same place, to protect it against further damage. Before the brace, when I had to go to the toilet, I would simply pull my chair up close and slide across. No problem.
Now, however, two broken hips and the brace later it's not so simple. In fact it's not. Period. The brace rubs against the toilet in an awkward place, and after the broken hips I haven't been able to maneuver the slight difference in height between my chair and even a raised toilet. An ordinary toilet is out of the question; my shoulders aren't strong enough.
What I am able to do is use a free-standing bedside commode I keep in my bedroom. So I'm very careful to have my daily bowel movement before I leave the house, even if it means getting up two or three hours early and ingesting what I hope will be enough caffeine to get things going. I also try to balance fiber, liquid, and the occasional laxative.
For two years the Force was with me. But today my luck changed. I had planned to take a 7 a.m. Paratransit bus to San Francisco to St. Gregory's for a five-hour Chapter meeting. The meeting doesn't start till 9 a.m. but that was the pick-up time Paratransit gave me. Usually I allow myself three hours, but somehow I just couldn't see getting up at 4 a.m. so I set the clock for 4:45 and started drinking Diet Pepsi. Diet Pepsi? you say. Yes, the caffeine and the cold fizzle usually do the trick, though these days it's taking more than it used to, to get the same effect.
It was 7 a.m. and the bus arrived. Nothing had happened on the alimentary front. I wanted to go to Chapter (a twice-yearly members-only event), but even more I did't want to get myself in a situation that could well have been messy, embarrassing, and malodorous. I told the driver to leave without me.
If I'd gone and made it through without necessity striking while I was on the bus, St. Gregory's has a portable toilet raiser, which is currently on top of a cabinet. If I needed to use the bathroom there, someone would have had to lift it down for me--and I would have felt a lot safer if that person spotted my transfer (the first in a very long time) from the chair to the toilet. All this with a growing sense of urgency--nope. It didn't seem like a good idea.
I'm sorry I'll miss Chapter; it's a special day of discernment and sharing, but I'm not distraught or overly disappointed. It helps that today is San Leandro's annual Cherry Festival, which I had regretted the prospect of missing. One good thing gone, another good thing in its place.
And much of what comes with being disabled is still harder than it looks.
Now, however, two broken hips and the brace later it's not so simple. In fact it's not. Period. The brace rubs against the toilet in an awkward place, and after the broken hips I haven't been able to maneuver the slight difference in height between my chair and even a raised toilet. An ordinary toilet is out of the question; my shoulders aren't strong enough.
What I am able to do is use a free-standing bedside commode I keep in my bedroom. So I'm very careful to have my daily bowel movement before I leave the house, even if it means getting up two or three hours early and ingesting what I hope will be enough caffeine to get things going. I also try to balance fiber, liquid, and the occasional laxative.
For two years the Force was with me. But today my luck changed. I had planned to take a 7 a.m. Paratransit bus to San Francisco to St. Gregory's for a five-hour Chapter meeting. The meeting doesn't start till 9 a.m. but that was the pick-up time Paratransit gave me. Usually I allow myself three hours, but somehow I just couldn't see getting up at 4 a.m. so I set the clock for 4:45 and started drinking Diet Pepsi. Diet Pepsi? you say. Yes, the caffeine and the cold fizzle usually do the trick, though these days it's taking more than it used to, to get the same effect.
It was 7 a.m. and the bus arrived. Nothing had happened on the alimentary front. I wanted to go to Chapter (a twice-yearly members-only event), but even more I did't want to get myself in a situation that could well have been messy, embarrassing, and malodorous. I told the driver to leave without me.
If I'd gone and made it through without necessity striking while I was on the bus, St. Gregory's has a portable toilet raiser, which is currently on top of a cabinet. If I needed to use the bathroom there, someone would have had to lift it down for me--and I would have felt a lot safer if that person spotted my transfer (the first in a very long time) from the chair to the toilet. All this with a growing sense of urgency--nope. It didn't seem like a good idea.
I'm sorry I'll miss Chapter; it's a special day of discernment and sharing, but I'm not distraught or overly disappointed. It helps that today is San Leandro's annual Cherry Festival, which I had regretted the prospect of missing. One good thing gone, another good thing in its place.
And much of what comes with being disabled is still harder than it looks.
2 comments:
Thank you for sharing insights that remind us why we all need a more accessible world.
How was the Cherry Festival?
You commentary brought tears to my eyes. This is the unspoken cost of disability: the daily calculations of the private, the set/reset of what for others is automatic, as it once was for me, the narrowing of spontaneity. I have idiopathic transverse myelitis which has left me paralyzed from the waist down. I use a manual wheelchair.
You found the grace in the moment. I am often just left angry, annoyed at the intransigence of
others, their inflexibility when it is so infinitely more possible for them than it is for me. I applaud your effort: I now no longer schedule anything before noon, knowing the hours it
takes to dress, do my ablutions, empty, clean. Thank you for sharing. I am creating
a paratransit nonprofit as there is no paratransit in my town.
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