This post came to me while my face was pressed up against my toilet’s ceramic underside. I probably should have thought “Ewwww!” or “Must clean more!” but instead my thought was “Three more feet!”
Today’s Topic: the silent life of disability. No, not those parts of your disability you freely share but those ‘other’ moments, incidents, feelings and aspects of your condition/s which are too painful, private or socially unacceptable.
I had woken from sleep with no balance and little limb control. I woke because I needed to pee. I had wormed and flopped this far because I wanted to pee. But there was still three more feet. My home support worker stood in the hall looking down at me. I asked her if any of my support bars were within arms reach. She said no and wandered off (odd, odd woman). Later she would stare down at me and ask if I believed in God.
Why hadn’t someone warned me this moment might arise when I first became ill (That “Evangelical home worker between you and bladder relief” moment)? I did go book hunting after all, to find the Strum und Drang of disability, instead finding only accessibility guides and autobiographies looking back years later after the author had reached some inner peace and/or accomplishment. To me, useless. Where was the book; My First Year in a Wheelchair or Down the Rabbit Hole: from first symptom to diagnosis? So I went blog hunting and found lots on being disabled, living disabled or disability issues but almost nothing on “Why do I have explosive diarrhea when I am weak, trembling and having problems with balance?” or “foot dragging and its effect on your toenails.” Where was that intimate information on all the mundane, icky-but-oh-so-frustrating stuff that makes a life (or a disabled life).
You see, this isn’t my first disability; it’s just the first I haven’t been able to hide. In looking back, I realized what almost all those book writers, bloggers and people with disabilities (including myself) had been doing: exercising the freedom to choose how to present yourself, your life and your disability (even while the disability might keep stealing away other choices). Because being brutally open about ALL of your life will have people running away faster than woodland creatures from a forest fire. But oh how I owe those few who revealed.
Kay Redfield Jamison’s book, An Unquiet Mind, helped me understand I was not alone as a person with manic depression who struggled in a professional field where the question “Have you ever been committed against your will?” still showed up on application forms and in interviews. There are parts of my manic depression/bipolar disorder, my current physical illness and my other disabilities that I simply cannot share with anyone except maybe a partner, doctor or care worker. Cannot. Too painful, too shameful, too personal, too humiliating, too much to give away for what I had to pay. That’s my silent life. So yeah, surprise! I have a mental illness; feel free to throw in a “running with scissors” joke, or call someone a ‘loony’ and then glace over to me; others have.
Rolling out of my apartment demonstrates what I am prepared to share with the world (though if you know about a wheelchair cloaking device; contact me now!). Yes, as people with disabilities we are connected through our frustrations, our being belittled, demeaned, looked over, undervalued and our medical and social common experiences. We are also connected because maybe there are some feelings and experiences we can’t share, even to someone with the same condition.
No, we are not our disability. But our disability is more than what is seen, and it often affects and alters some of those little details that other people (or we) take for granted. Those are the details where I begin to understand a condition. Dirty Butter over at Day by Day with Parkinson’s and Peripheral Neuropathy has been talking in detail about Parkinson’s and bowel problems, specifically constipation. Parkinson’s attacks the autonomic nervous system which may cause the intestinal tract to weaken and operate slower (ergo, constipation). Dirty Butter says at one point, “I have lost track of how many colonoscopies and endoscopies we have had.” Lost track? I asked different people how many colonoscopies they would need before they would ‘lose track.’ The average was 20. Now, I may only understand 1% of what it is like to have Parkinson’s, but in reading about colonoscopies or having to drink one gallon of the “slippery, salty” GoLYTELY, I have SOME idea that Parkinson’s is more than just Michael J Fox disappearing to do voice acting.
The sad truth is that until people have some clearer understanding of the different conditions and disabilities, they will continue to treat us all the same: “The disabled” (also known as “those who really dislike being called disabled”). And as much as I’m trying, that “they” probably includes me. What I do know is that a disability turns what for others would be the most surreal, horrific, painful, socially unacceptable or biological base into the mundane. During my pre-medication days, my partner’s response to seeing me naked atop a roof was a sigh and “Not again. Didn’t we do this Monday?” Buckle up kiddies, you left ‘normsville’ two stops back.
Okay, I’m hoping this won’t come off as insensitive as the people who ask of Linda and I, “So who plays the guy?” but here are some of the questions I would like to understand:
1) If pregnancy is sneezing out a watermelon, what does an MS cramp or spasm feel like?
2) Did a diagnosis of Chronic Fatigue make you feel better or worse?
3) Why are programs with the word “integration” in them only for people with disabilities?
4) In detail, what would the morning routine of a C-6 quadriplegic from waking to being ready to leave the house be like?
5) What do sight impaired people do with junk mail?
6) What’s the one question you never want to hear about your condition again?
7) How long after an amputation can you feel a phantom limb? Can you move the phantom limb.
8) How often do people say they believe your disability but then say or do things which show they think you “just might be lazy?”
9) If you could tell the rest of the population to change one habit (which would help your life), what would it be?
10) Does EVERY spinal cord injury person go through an “I’ll walk again” period?
11) How long does it take to “get used” to ALS/MND? And do you begin to hate your body?
12) Why do doctors never seem to agree?
13) If you read lips, what is the hardest accent to read?
14) What has your disability made mundane to you but makes other people’s eyes get all freaked out?
15) If you have CP, how will I know when you being sarcastic or making fun of me?
16) Did you ever try to make a deal with God about your condition?
17) What is the best thing about having autism/aspersers? (No, I’m not asking you to go to Vegas with me.)
18) How did growing up with a disability make your family different?
19) Why is the only UK TV license disability discount for sight impairment? And why is it such a small discount?
20) Is there some point when random strangers will stop telling you to “have hope”, “a new cure is coming” or “keep thinking positive?”
I apologize if you are offended; I’m thankful if you would answer. Maybe if I “get it” there will only be 5.99999 billion people left to be educated. What? That doesn’t encourage you?
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