for those of us who didn’t grow up in the 80s in or near a ghetto, a “dis” is a put-down. it’s a smack in the face. it’s a nah nah got you type of expression…
i read a book recently by alan rucker called ‘the best seat in the house’. or something close to that. i could link you here to the amazon website, where you could buy it and make my husband’s stock go up, but i got my copy from the local library 😉
anyway, it is the story of a man who becomes paralyzed and wheelchair-bound in his 50s. it is an honest portrayal of some of the challenges of living as a disabled person. and because he became paralyzed later in life, he was able to contrast “normal life” with “new normal” life.
even though i read it several weeks ago, i have been thinking a lot lately about my own bout with disability, and i wanted to revisit some of the trials here. maybe it will make you more sensitive to people with disabilities. maybe it will make you more aware of their struggles. maybe it will just give you a few laughs. and that’s okay too- because if we can’t laugh at our lives, i think the suicide rate would be much higher.
in april of 2002 i went to bed with what i thought was a flu. i didn’t know then that it would be several years before i could walk again, and even more before i could read or drive.
after months of misdiagnoses- everything from MS to myasthenia gravis to ‘you have too many kids’- we finally found the culprit. a pesky virus had invaded my brain, causing meningitis and encephalitis. since western medicine doesn’t really know how to deal effectively with viral illness, we pretty much sat back (to be perfectly honest, i laid down. by then, i was totally bedridden.) and watched as my brain became more and more damaged. cranial nerve after cranial nerve fell to the virus, and all we could do was to sit around and whimper.
by the time i was able to sit up enough to be in a wheelchair- many months later- i was a new person. i had gone from an over-achieving mom/teacher/high school principal/grad school student/ trying hard wife to a shell of a human. i had more cognitive problems that cognition. i had more medical problems than a textbook, and i became a bit too familiar with my local ER. even basic tasks were a struggle- like bathing when you can’t get in and out of a tub, or brushing your teeth when you can’t reach the sink. (for the morbidly curious- i laid on the floor, grabbed the edge of the tub to get me on my knees, and sort of dumped myself over the edge into the tub. i brushed my teeth sitting/laying on the bathroom floor and just spit into a trash can. pretty, huh?)
i remember *h taking me to a grocery store and having the cashier look directly over my head to talk to *h like i wasn’t even there. i commented on something she said and she totally ignored me. the bagger wouldn’t meet my eyes. people in the store looked away (in pity? horror? fear of contagion?) i’ll never know why i became persona non grata, but i can tell you that it caused me almost physical pain. i went from being a PERSON to being nothing. not even being A nothing- just nothing. like i had been erased. like i became a murky vision that nobody wanted to see.
one afternoon, i was going to go on a “walk” with my kids. it was just down the block, but for me, it was a major hurdle. we had no wheelchair ramp on the house (who knew that insurance wouldn’t cover it and there were NO private organizations who were able to do it for us? maybe one day i will start a foundation for people to get modifications to their house when they need it but can’t afford it…)- so going out meant *h taking my chair to the bottom of the steps, and me belly flopping onto the porch and then crawling down the steps (backward- safety first!) and him helping drag me up into the chair again. one of my kids (they were fairly little at the time) asked, “mommy- could you come without the wheelchair? i don’t want people to see…” so, i stayed home while *h walked with them. even now it almost makes me cry.
over and over again, people would disregard me. at the movie theater (where i got an awesome seat, in a section all for me, thank you very much!) the ticket taker went to great pains to avoid touching my hand when he took my ticket… when people actually did speak to me THEY WOULD DO IT VERY LOUD AND VERY S-L-O-W-L-Y. sheesh, i was disabled, but not in that way!!! some people got me helpful gifts, like exercise stuff- for when i was able to exercise… (now that’s the power of positive thinking!). one overly helpful soul defrosted all the food in my freezer, hoping that it would inspire me to get up out of that wheelchair and start cooking! (by the way, i cooked and baked plenty from my wheelchair. i also took up sewing, and pieced together an amish quilt which my friend’s daughter still carries with her. so i didn’t exactly need inspiration- just more energy! and i had *h re-freeze all that food. man oh man.)
my own doctors would look at *h- or my mom, or whoever brought me to the appointment- and say, “so, how are we doing?” and i was like ‘really? i’m right here. YOU are probably doing fine; i am doing quite poorly. thank you for asking. and *h works all day, so how do you expect him to know?’ people would talk in that irritating voice some folks insist on using with young children. people would ask really private and personal stuff. um, sorry but if i wasn’t in a wheelchair, would you really ask about my bathroom habits? or my intimate life? time and time again, i was just shocked at how propriety went out the window because i was sitting instead of standing. maybe people get really tired of standing up and they get jealous that you travel with your own chair, but now that i’m among the walking again, i can say that i don’t think that’s the case…
people close to me who i love dearly would pick out my deodorant and my underwear and my maxi pads (sorry, was that too much information?)- under the assumption, i guess, that if i couldn’t shop for it myself, i obviously couldn’t decide what i wanted either. or maybe they thought i was so occupied with being disabled that choosing a shape of pasta would have just completely derailed me- “oh no! for the love of god, people, not ONE MORE THING to deal with!!!”
so, i wheeled on, trying harder and harder to will myself well (shockingly, that didn’t work. but if it did for you, more power to you. just don’t tell me i wasn’t trying hard enough.).
i read books by people like someone cousens (norman?) who cured himself of some fatal disease by taking lots of vitamin C and watching comedy videos. i felt so demoralized that i couldn’t laugh myself well, and i just chalked it up to one more failing on my part…
i set my mind to being the most inspiring disabled person ever. i would love my kids more. i would read to them more. i would be more patient with them. i would be a better wife. i would cook better food. i would be more compassionate and understanding. i would be a light to other people who wanted a disabled role model. i would speak at support groups and be so ‘wow’ that people would barely notice my disability- although in my surreal vision they would also celebrate me for it!
but guess what? my personality didn’t get any better just because my brain refused to work. i was still short-tempered, still couldn’t tolerate my kids making noise or being kidlike near me, and still snapped at *h when he did something stupid (which obviously he never does, so let’s call this ‘artistic license’). instead of mother theresa i was more like oscar the grouch, so for all i had lost, there wasn’t much i gained.
over time, i worked my way to using a walker instead of a wheelchair. the doctors had told me just to give up and get used to being in a wheelchair. that being in denial about “my condition” was going to stop me from moving forward. but, i was too stubborn/stupid/determined to listen…
i fell. a lot. i had bruises and bumps and hurt pride more than anything. i opened cabinet doors into my face because my stereo vision was gone- taking my depth perception with it. i dropped numerous things on the floor because the counter moved away from me as i was setting the item down. i was perpetually dehydrated from the constant vomiting that was part of my brain damage. i blew up 50 pounds from the steroids and wore granny undies that my mom picked out and carried a gallon size zip lock bag in my purse to throw up in. yes, really.
i had the self-esteem of an avocado and the IQ to match. some friends stayed away because they didn’t know what to say. which was fine, because i had nothing to say to them either. some friends tried to get too close- one woman in particular would come over and just sit in my bedroom and weep. i guess she thought this gesture of solidarity would make me see how much she cared- but in the end i called another friend and said, “i don’t know how you can say this without causing an international incident, but please tell ______________ not to visit me anymore. she’s making me suicidal.”
there were upsides to the whole disability thing. my mom did all of our laundry. my friends and neighbors sent over suppers for what seemed like 10 years. yes, my kids now have a chronic aversion to anything that even resembles tuna casserole, and yes *h ended up making lots of pasta and hot dogs when supper arrived and it was some weird concoction that someone claimed their family just loved. i got to go to the head of the line at the DMV (i needed an ID, since i obviously couldn’t renew my driver’s license, and we had handicapped tabs for a time). i even have fodder for this very blog post.
now my disabilities are more “invisible”. you can’t tell by looking at me that there is anything wrong (on most days). i can have basic conversations without a problem, and most of the time i can even have more advanced ones. i’m good about covering up for my deficits, and that’s a real blessing. there are advances in neuro research every day, and the findings on neuro-plasticity are quite promising. i still feel like a faker in the real world- still on edge wondering if someone will know that i am different (and not in a good way)… there are days i still wish i had my wheelchair handy so i wouldn’t stumble so much, and there are days i miss the security of a walker, especially when my brain gets overloaded in crowds and my world starts to tilt and spin. sometimes i wish i had a shirt that said, “caution: disabled person. approach at your own risk”. maybe i will get one of those made up.
or maybe i will just continue to walk among the regular folk, enjoying my bad habits and guilty pleasures and being a regular slob like the next guy.
i will be grateful that people no longer look at *h and think, “what’s HE doing with HER?” (at least i hope they don’t!). i’m happy that i don’t embarrass my kids, at least from the way i get around. i’m delighted to get in and out of the bathtub without having someone stand at the door waiting for a crash to signal that 911 may need to become involved, and i’m practically delirious with joy that i can bathe with the door LOCKED. (even writing that makes me smile conspiratorially and almost giggle with glee!)
i’m aware every day of being one of the lucky ones who was able to regain functioning after being disabled, and while i hope i never ever have to revisit that chapter of my life, i hope i never forget to have a sense of gratitude and wonder.