Snorting industrial cleaner; just say 'no!'
People always ask me āWhen did you have the accident?ā which to me sounds as if I am 16, waif thin and obviously pregnant. Oh, you mean the wheelchair! There is no simple answer, but I often think of what was said to Winston Churchill, āI believe you are drunk...ā no wait, I think it was another saying about a mystery wrapped in an enigma. So no, I am not paraplegic nor did I fall from a tree while stalking the Queen Mum. I have a heart/neuro degeneration thingy. This is uncommon. But then I am finding out that there are many āuncommonā medical paths. There is MS, ALS/NMD, Lupus, Lyme disease, Parkinsonās, Encephalitis, G-B Syndrome, Creutzfeldt-Jakob and PML. And these are just some of the neurological; there are dozens of ways to win the disability lotto, some temporary, some permanent. And it isnāt because you smoked or drank, or stopped too often to smell the roses; it just happens. That really frustrates doctors. Some of my many doctors are convinced that I did āsomethingā, probably āsomethingā like snorting industrial cleaner, to end up like this.
Have we established that I am the ācould be any womanā yet? That I was a walking Temporarily Able Bodied and didnāt even know it? I hope so, because medical talk is dull. What is interesting are all the incredible things people will simply come up and say or do if you are in a wheelchair. Like my first bus ride (actually my second as on the first one the driver refused to pick me up) when I, in wheelchair, am on one side of the bus, and a woman with Downās Syndrome is on the other. She is going to work at the Red Cross, I am going home. A ācaringā woman decides to talk to āthe disabledā and does the slow, slightly loud āAnd how are you, dear? Thatās nice dear!ā which some people believe to be the universal language of disability. The woman with Downās and I are both slightly vexed that ācaring womanā cannot tell us apart. I am in a wheelchair, she isnāt. She has, as she slowly explains to ācaring womanā both a job which makes money and a boyfriend (I have a girlfriend and my contribution most days is recycling carbon with my lungs). But ācaring womanā doesnāt listen and goes on with the inane questions. So we ignore her and end up talking to each other. It is an easy conversation since she works at Red Cross which loans medical equipment and I have about 30% of their inventory in my apartment. Seriously, the Red Cross truck drivers wave to me as they drive by.
Iām not going to tell you all about what made me special as an able bodied person because those were the ābeforeā values. Values of a society that I canāt meet anymore, and got quickly tired of trying to. Now, I try to get outside every day. I try to do some sort of exercise twice a week (currently that is ). I work at not letting how well or bad or in pain I feel on any day or series of days determine my outlook. Still every month there are conversations with my partner Linda like this:
Me: āIām cured! No really, I feel completely normal.ā
Linda: āAnd how long have you been ācured?āāMe: āFive hours.ā
Linda: āHmmmā¦.ā
NEXT DAY
Linda: āIām pretty sure you donāt want EVERY human to spontaneously combust.ā
Me: āYes I do, I hate them all!ā
Linda: āYouāre in pain, arenāt you?ā
Me: āPain! Do you know how many nerve connectors go to the spinal cord? One billion!ā
Linda: āYou want another pill?ā
Me: āKnow how I know...Iāve been counting them!ā
Linda: āTake the pill.ā
Every time I give those little snapshots of my life people email me wanting to tell Linda how much they admire her.
The other thing I do is try to understand or at least record the way in which I and society bump up into each other. Like how a lot of women are randomly getting all maternal on me. I have 21 year old girls asking āYou okay, sweetheart?ā This is pretty odd for someone who is over 6ā3ā, has an athletic build and has been more used to short men coming up and asking me to spank or dominate them. So no, Iām not exactly ādelicate.ā But when women ten years younger and half my size want to stroke my hand....I say YES and I donāt tell Linda but Iām still confused. And letās not get into the women five to ten years older than me who hold me and say I remind them of their daughter. Thatās a compliment right, I think?
I shouldnāt forget mentioning the benefits. As I said today to the woman painting the henna tattoo on my body, āThe old rules donāt apply.ā There is nothing like traumatic life-altering medical problems to help demolish that mental 12 volume set of āWhat Good Girls Do.ā Are all girls who wear thong underwear really tramps? Letās order some and find out. A lot of my social concerns disappeared once I had something nastier to fear. I dress goth now, or wheelchair goth (always thought it was cool, always too scared to try). My female physiotherapist calls it āprostitute wearā after I showed up in a miniskirt asking her to alter my wheelchair footplate for high heeled knee-high boots with buckles (PVC boots). But hey, she was the one who told me it was āimpossibleā to wear a miniskirt in a wheelchair. Thatās a challenge, right? Besides, her 19 year old daughter comes to me for fashion tips. People will try and tell you that āJunior missā sizes are not for wheelchair women in their 30ās. I disagree; my clothes come from Sweet and Toxic, Morbid Threads, Slash Nā Burn, Arsenic, Lily and Remains, Trick Fairy, Kill City, Darque, and Demonia. Plus I have a vampire teddy bear in his own mini velvet-lined coffin. Cool, huh? Remember: the old rules donāt apply.
So thatās it; the quick 101 on Elizabeth McClung, disability blogger. I hope you werenāt looking for dignity or sensitive insight. Good.
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Comments
i think i love you
I concur with the last commenter.
I am so pleased to see you blogging here.
Your writing definitely deserves a wider audience.
Nicola and Stephen Pickard: As usual, any display of genuine emotion makes me want to employ the usual gambit of "What's that over there?" as I fling myself out the nearest window. I'll try saying, "Thanks!" instead.
Lady Bracknell's Editor: Arr! Arr! Me write good! (hitting keyboard with head) - I have to warn you, I tend to veer heavily into 17th century capitalization and grammer (if I like the word I capitalize it. If I really like it, I capitalize it and surround it with commas). Thanks for your uplifting encouragement.
Great post! The inane behavior of the TAB in a nutshell...
Yay, I am glad you're on board on here!
Great to see you blogging for the beeb - I hadn't discovered this part of the Ö÷²„“óŠć website before. Good points and well (and wittily) made.
So....
Was that Comet or Ajax ?
(inquiring minds want to know)
MS. McLung you do get around!
Glad you're audience is expanding. Speaking of which Any chance of expanding into goth/wheelchair/dominatrix design someday? And if so can I get on the mailing list?