SCREAM ALL THE TIME

By Heidi Johnson-Wright

Once upon a time, I sincerely answered the stupid questions of others with nary a whiff of sarcasm. 

Yes, I find it hard to believe myself. But I can recall some of those moments from my youth when I thought it was my duty to educate others about my disability. Or even about disability in general. I figured that -- as a gimp girl -- I must be a positive gimp role model for the rest of society. Why, hadn’t the non-gimps allowed me to use their marginally-accessible restrooms and attend their marginally-accessible schools and struggle to find marginally-accessible housing? I had a debt to repay!

I recall a particular episode when I was a college freshman. My university offered free physical therapy for students with disabilities. It was after a PT session that I found myself at the student health center waiting for a van pick-up back to my dorm. And who should join me but Crazy Debbie.

Now, I didn’t know at the time that her name was Crazy Debbie. I learned that later after I described her to someone who knew her. All I knew was that she was a soft-core -- minimal Mohawk ‘do with no face piercings -- punk chick who introduced herself as “Deb.” (For those younger readers who are incredulous about the absence of piercings, keep in mind this was spring 1983. Back then, we thought Michael Jackson’s one glove was rad.)

Crazy Debbie started up a conversation with small talk, followed by a question I’d been asked a million times before: “What’s wrong with you?” Ask me that question today and you’re likely to end up prying my European-size 35 hand-made in Italy out of your butt crack. But back then, I responded with a gentle smile, followed by my fact-laden canned speech about rheumatoid arthritis:

“Auto-immune disease…no known causes or cures…new diagnosis in the U.S. every 30 seconds…blah, blah, blah.”

But before I got too far into my spiel, Crazy Debbie blurted out: “Isn’t that the disease where you just scream all the time?”

It’s possible that was simply a sincere question from a crazy person. I’m pretty sure, however, it was the punch line from a punker who thought she was getting over on a naïve little girl from the ‘burbs. I responded with a polite, serious answer about how the pain sometimes made me scream. But even dopey little 18-year-old me knew I’d been had. I was glad when my van ride showed up shortly thereafter.

I have no idea what Crazy Debbie is up to these days. Perhaps she’s a bobo CEO of a Fortune 500 company. Or maybe she’s now a grandma living in a double-wide in a backwoods holler somewhere.

Crazy Debbie, if you’re reading this, just remember: you never know when I’ll be wearing my Manolos. 

http://earthboundtomboy.blogspot.com/2015/09/scream-all-time.html

MY CONSTANT COMPANION

THE CREEP IN MY BASEMENT WHO IS PARTIAL TO
OP-ART POSTERS, CHEVY CHASE MOVIES AND BEEF-A-RONI

By Heidi Johnson-Wright

I have a constant companion who never leaves. Even when I’m otherwise alone -- in the shower or tucked away in bed -- my companion is hanging around.

We don’t speak. Don’t need to. We intuitively know everything about each other. Know where to find the dark corners of the mind and the cut-to-the-quick places that never heal.

We have a long history, my companion and I. It was the summer of 1973, when Nixon was still in the White House and Paul Lynde was the center of Hollywood Squares. It was also when juvenile rheumatoid arthritis claimed me and its signature feature – debilitating joint pain -- showed up at my front door. I thought it was merely a slovenly, uninvited house guest, a ne’er-do-well that would pack up in a few days, maybe a few weeks, then depart. Instead, it moved in and never left.

Over the years, I – along with a cadre of medical professionals – have tried to evict it. Tried to send the pain packing by strong-arming it with a pharmaceutical goon squad. At times, we pushed it toward the doorway where my loathsome companion was barely clinging to the jamb by its dirty fingernails. But when I turned ‘round, it was reclining comfortably in a Naugahyde La-Z-Boy in the den, plowing through a 12-pack of Schlitz, belching loudly and tossing the cans on the floor.

My companion used to wander the house howling at the top of its lungs. Used to bind me like concertina wire in a cruel embrace. Each day was dreadful but the unpredictable flares were far worse. When my companion tore up the furniture and ripped open walls on intense benders -- I remained motionless. To even sit upright would push me to the edge of a blackout.

I remember untold hours spent attempting mental distractions. Counting the bumps on the ceiling. Spotting all the places the wallpaper pattern repeated itself.

By junior high, my body grew increasingly unpredictable. As my strength dwindled, my companion’s blossomed. On good days, the microscopic drug goons patrolled my insides with brass knuckles and lead pipes, looking for my companion. But his outbursts could only be quelled a bit, from roaring jumbo jet to battering jack hammer. A knee might flare and make walking even a few steps a nightmare. A joint in my finger or the bones in my hand would partially dislocate and I would have to jam them back into place. My jaw would hurt so bad I could barely chew.

Because the pills I took were about as effective as swallowing M&Ms, my arthritis remained unchecked. My companion moved from the guest room to a basement efficiency apartment. It put up black light Op-art posters and beaded curtains. Ate Slim Jims and Beef-a-roni out of the can. Watched Chevy Chase movies on Betamax while lying on a Murphy bed, clearly in it for the long haul.

Years passed and my bones disintegrated. Joint fusions and replacements -- brutal human carpentry –were my only option for anything resembling a life.

I eventually worked out an arrangement with my companion. It could have a 99-year lease on the basement, but the stairs in between were our DMZ. It could make a tolerable racket, provided I couldn’t hear anything over the soothing sounds of my mental white noise machine.

My companion is still alive and kicking. But most days, I can tune it out. I’ve compartmentalized my home, my heart and my mind. We live our separate – yet very interconnected – lives.

Last Christmas, my companion demanded Netflix download service, a pair of Nike Zoom LeBron Soldiers and a craft beer brewing kit. My reply?

“Stick it where the sun don’t shine.”