One thing universal to almost all disabilities/impairments are the biological issues, which need accommodation; and rarely get it. Let me speak of farts. If you have sleep apnea, and have to use a c-pap machine, or need a b-pap to breathe during the night, a common side effect is forced air, ergo, gas and belches. I have a malfunctioning diaphragm and seizures, add the two together and during seizures, while I may get my memory wiped, I will be gasping for air of which SOME may make it into my lungs.
The next day, with a nose bleed and a severe case of the farts, I ask, "Did I have a seizure last night?" I'm told I had three. Ah, well, that explains it. But how do I explain it while in line at the supermarket or while renting a DVD? A ripping sound emerges from the wheelchair, do I look around with a smile going, "Had a seizure yesterday!" Let's try not to remember the MRI tube episode.
So yeah, disability is never just one thing but a whole bag of surprises. And you get used to it. It is amazing what can be gotten used to: leaning over the side of a bed to drain out aspirated liquid and food, having your drool/spittle wiped after a seizure, and flying out of a wheelchair at a bad kerb cut. The days when you're too weak to use the hair dryer, look in the mirror and decide, "I'll live with it!" Then there is having an impacted colon, having a colostomy bag, having a catheter, having to use a cane and having to sit down more often while your friends keep walking. Migraines, seizures and ASD give extreme sensitivity to light or noise while many others give muscle tremors: having the shakes and dropping things with your hands, and biting your lip or side of your mouth when you are tired and trying to eat. Then there are the spontaneous nosebleeds, the nausea from blood pressure, the sensitivity to cold for quads needing blankets and to heat for MS patients needing cooling vests.
But we get used to it.
The general public has no idea, "Oh, MS means you shake or something, or is that Parkinson's, which one does (insert famous person here) have?" As a person with minimal nerves, I have bruises over most of my right side; but my regular spills and smashing into walls would dislocate elbows, shoulders, fingers and ankles of my EDS friends.
Yes, I know these are the things I am NOT supposed to talk about, but this is the reality of disability. For example, here they love to shove baby changing tables inside wheelchair accessible toilets. Okay, I may be a newbie wheelie but it takes a while to get my clothes down, my underwear down and transfer onto the toilet only to hear a mother try the handle of the door and say to her baby, "Oh, you'll have to wait, it will only be a minute." Yeah. No pressure. Also, while there are grab bars to slide OVER to the toilet, often there aren't ones to slide BACK. Which makes getting into the wheelchair a sort of 'climbing Everest with your arms while your underwear is around your ankles' event.
Things just take longer. But for some reason people think that once inside a disabled toilet, you gain the speed of an able bodied person. Well, no, not if you have muscle weakness on one side, or Parkinson's muscle slowing, then a quick toilet trip is 45 minutes. And when you have bladder retention instead of loss, then I sometimes want to scream to the people trying the handle every 30 seconds to see if I have teleported out, "Disabilities are MORE than skin deep!" Meaning, it takes TIME.
Okay... hair... don't know what happens to guys but if you are a female with a chronic illness there is a good chance your nice hair goes bye-bye, either from medical treatment or from auto-immune diseases. But hey, some will start showing up on your face! Fun, fun, fun. And if you are like me, with assisted showering, I don't have the time or energy for leg shaving. It's 40-60 minutes just to shower.
I literally did not know how much head hair I had until I started losing it, and then it goes, and goes, and goes and eventually, no matter how creative your hairdresser, it shows. A friend told me that due to her auto-immune disease she has lost and had her hair come back three times. I was not comforted, I only wanted to know one thing, "How did you make it come back?!"
So we are biological beings living against a standard made for people who have no condition except aging. So it is amazing what can and often MUST be endured. The amount of times I have had to pee to a collective medical audience is not worth remembering. Yet in a future seizure, I will pee: myself, the wheelchair and all near by things ("fountain McClung" they call me). I've opened the apartment door with my teeth because both arms and hands are so shaky I have given up yet STILL need to get inside! Sometimes painful, sometimes embarrassing, sometimes both (try going to the ER with an impacted bowel, woo hoo!), but still, the things that 'must be done.'
Now that I have left you with the image of hairy legged, balding, farting, belching, bruised and slurry speeched woman (oh wait, I hadn't mentioned the slurry speech, darn!). Please come on, give up the stories. I know I am not the only woman with a sudden medical gift of hair (steroids: helps tumors AND gives facial hair!), and I am sure guys have just as many issues. For one thing, wheelchairs are not known for their leaving a person thin, svelte and sleek looking. And the "doing what must be done." Please, I have not done it all, but I have heard a lot. So here I am, interested, wanting to know, what is it about you or your condition that I don't get, what story of that day and thing which "must be done" (how about this horrid phrase, "Needs to be re-broken"), that is endured, that isn't understood. And if you can't talk on that, surely you have a comment on disabled toilets!
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