Breath & Shadow
Spring 2019 - Vol. 16, Issue 2
"The Hidden Circus"
Jo left for Cali on the 12th. I could regale you on how she was the best I ever had, how she was the perfect mix of friend and professional, how I used to look forward to hearing “Good morning, girl,” each morning and how we talked about personal things on mutual sides. But I’m not going to. Because she’s gone, she’s happy, talks to me every day, and no matter how badly this hurts, I am actually happy for her. Because I know, if someone offered me a way out of this podunk town, I’d take it, even for a little while.
The shower is the worst bit. Granted it was the same with Jo, Beth, and all the rest I learned to like/love enough to make them extensions of my body, like my mom—but first, there’s the robot complex. A period ranging between two weeks and three months, where I look in the mirror and do my normal knee-jerk self-deprecation routine, but there is an emptiness. A realization that for now, I am a naked baby doll that needs to be cleaned.
When people think of cerebral palsy, or muscular dystrophy, cystic fibrosis, RSD, or any other disorder that can affect the mobility and independence, they don’t think of this. They don’t think of the day-to-day relying on strangers to wash your body, or directing them where the soap goes, or making sure they know how to correctly wipe your nether regions, so you don’t get infections (because believe me, after the amount of people I have seen and met, my faith in the fair distribution of common sense among humanity, is all but dead.)
People think of the cool or inspirational sides to the disorders: Mattie Stepanek, RJ Mitte, Nick Vujicic, or the hot funny guy that does the blogs, let me look up his name—Zach Anner—there you go. These people truly make lemonade out of rotten limes, and good for them. But not all of us are that charismatic. Not all of us put on a brave face and make it good. Some just breathe and ask the Lord for strength and patience not to deck a person—because what kind of human being puts dog dishes with the glass bowls, Annabelle?! And can you please put whatever over here, so I can reach? Father, forgive them, for they know not how stupid they are.
Or when you wake up dreading the brand-new face you must teach how to do things and then discover that, after four months of absence, your menstrual cycle has decided to reappear in full force, adding to your embarrassment and general desire to sleep until they go away.
No. No one thinks of those things.
She closes the shower curtain, so I can wet my hair. I do this with all the newbies, but it’s really just a façade. If I’m comfortable with you, you’ll be wetting it, because I am the perfect combination of lazy, slow, and impatient with that slowness that makes it much more appealing to say, “You do it”. No, the curtain is so I have the illusion of time to myself. The illusion that the stupid waterproof castle with its wolf on the curtain is an actual place, far away from the sweet 40-something who is by all accounts doing a great job, but is so quiet and demure that she is just another body, paid to wash this one.
She opens the curtain, shattering the illusion.
I want to scream at the poor thing, but it would be like kicking a puppy.
“No, not yet.” I say sweetly.
She closes the curtain, I realize this is futile. Only prolonging. A few more dramatic ruminations on how I’m going to write the entry I’m now writing.
“Jess, I’m ready when you are.”
She’s great. Washes hair, folds my earlobes over while rinsing like mom does, so my ears don’t get water in them. I think about what Mommy said. At least I’m not sexually abused like that patient on the news or being taught/talked to about sex by a woman who is the posterchild for overblown psychology. I’m somewhat of a prude, so whenever good old Meg used to mention sexuality to me, I cringed, prompting her to tell Mom I was “afraid of it” and “should watch videos about sexuality and disabled pride.” Well, things have changed, and I am more comfortable with that stuff now, but that comes with adulthood, a loving partner, and a parent who regularly makes XXX jokes that make you say, “Good God, Mom, you’re gross.” Not some middle-aged Freud disciple that got her face painted at my college to “show me how to loosen up.” How ‘bout you loosen your grip on that psych book, Sassafras. Not everybody needs to emulate Lala from the Teletubbies.
That’s the funny thing about being non-ambulatory. People tiptoe around you, not sure of your cognitive or emotional level, but sometimes, the one who needs a mental-wellness check is the “normal” person assigned to wipe your ass.
I try to think of him when I’m in the showers. No, not “ooh I’m in shower, sexytime thoughts complete with vaudeville eyebrow motion.” No. Part of the reason I started exploring things (as much as Eric could for Mermaid Ariel anyway, (because pregnancy plus crippling [ha] Catholic self-loathing are not on my wish list) was because my body is cleaned, lifted, poked, prodded, ripped, medicated, stretched, patted, jiggled, bounced, rubbed raw, in almost every way possible, by every archetype possible who doesn’t have a penis. Why the hell should I feel guilty about an expression of affection that makes me feel less like Pinocchio, and more human, when these fair-weather employees that complain about the drive here, see what he sees and more that no one should see, while inadvertently making me feel like a disposable “meatsuit” straight out of the extras roster of Supernatural?
So, I try to think of him, because it negates the robotic empty feeling I feel when I have a complete stranger seeing everything and washing everything. With him, I don’t feel like a job or dehumanized, so I try to focus on that. To him I am not a job. To him I am not a doll. To him, for whatever reason, I am beautiful, and not the pile of disgust and embarrassment that I feel when around these new aides. I’m Amanda. And he loves Amanda.
I’m not saying I want everyone to love me, but you can’t deny that Jane and Michael Banks would’ve been really freaking uncomfortable if Mary Poppins didn’t build a rapport with them and started to do business. Not even a quarter cup of sugar could make that shit go down easy.
Its 3:15. She’s good about being seen and not heard. Walks by to see if I need anything.
My Faerie Voice: “No not yet, thank you, you doing okay?”
My Inner Dragon-Wolf Creature that resembles Sherlock Holmes: “Nope, I’m good, go back to not existing, please.”
Obviously Faerie always wins. It’s not their fault I’m secretly Scrooge, so why make their life miserable too? It makes no one feel better and spreads the misery. At least if I keep it in my little box, I can ignore it sometimes, spray it, like the bad animal it is when it growls, and make sure it bites nobody else in the ass.
I ask her to shave my legs. She seems like five years of bad choices away from being Gilbert Grape’s mom, so I’m afraid the bending over position will hurt her back, but I got the other end of the spectrum tomorrow (again sweet as can be, but as thin as a bendy straw), so the competent one gets the job. Jo, my dearest one, if this is a book that you are reading, or a publication or whatever, I feel confident enough in the rarity of our bond to say, that the one thing you did suck at was shaving legs. For a sec, I thought this one might one-up you in something, but she missed a spot near the side of my knee, just like you did. Keep your house points, Hufflepuff.
I’ve written this entire entry by hand, well, keyboard, because Cinderella is piddling round outside, and even asked to use the bucket under portable toilet to go to the bathroom—instead of rolling the seat over the toilet—so she’s not alone with my computer. Even if I were to close my door, my dictation voice carries. 4:27 P.M. 33 minutes. I make her sound awful. She’s not.
Puts me in my chair mostly right. Tucks in my skirts right. Cleans my bathroom thoroughly. Quiet. Cleans my dang fridge with stainless steel spray, folds my dad’s laundry. Mops. Says she wants to “earn” her hours. Fantastic. But she’s not my sweet sloth, (a nickname for Jo). I’m sure there will be plenty more sloths and stubborn bulls that teach me to open doors, and good-natured, boot-wearing tigers that growl about Obama, and monkeys and baboons that feel entitled to boss me around and give me their unneeded two cents. But the point is, among all of these creatures, good or bad, this is my three-ring circus, and even though I’m technically the ring master, directing the same acts over and over feels like its own special cage.
A. K. F. N. Myers, or A. K. for short, lives at home with her four dogs, two cats, and her rather surly rabbit. She enjoys science fiction and fantasy but finds comfort and enlightenment in exploring her own experience with cerebral palsy and Generalized Anxiety Disorder.