PROFESSIONALLY CRIPPLED

FROM THE AUTHOR OF THE UPCOMING MEMOIR: Earthbound TomBoy

By Heidi Johnson-Wright

Denial and acceptance seem, at first blush, to be polar opposites. Or perhaps two sides of the same coin. 

As a kid, I figured you either completely accepted something, or completely denied it. The light switch was either on or off, with no shades of gray in between. Decades later, I eventually realized the irrationality of such an extreme viewpoint.  I began to see that one could indeed accept certain layers of something, yet deny others. Such as a disability.

Since I was about 10 years old, my disability had become visually obvious. I could walk unassisted sometimes – wheelchair on the sidelines – yet there was no denying I was disabled. 

Arthritis had irrevocably claimed me. I had the classic look of a 1970s-era juvenile rheumatoid arthritis survivor. Should you meet anyone of my era who had severe JRA, our look is unmistakable. 

We have very small chins because of jaw joint damage. Our faces simply didn’t grow fully. We can’t turn our necks so we follow things with our eyes only. Our shoulder width is narrow. We struggle to raise our arms, which are short. Our hands are small. Our fingers are twisted, gnarled.

A JRA survivor’s gait is more of a side-to-side motion, rather than one of forward strides. If our hips were affected – especially if they were replaced – our lower backs are arched and our buttocks stick out. We have knee contractures that keep our legs perpetually bent.

With all of these undeniable physical changes, you’d think my acceptance of my disability would be complete. Yet when when I started using a wheelchair more often for mobility, I would sometimes find myself jumping hoops of rationalizations.

“I can still walk a little bit, so I’m not as disabled as those other chair users,” I thought.

One thing I tried to avoid was looking – as I called it – “professionally crippled.” While I couldn’t actually define the term “professionally crippled,” I knew it when I saw it. Kind of like Supreme Court Justice Potter Stewart’s take on “obscenity.”

The professionally crippled of the world tricked out their wheelchairs with beverage holders and bumper stickers. They didn’t discreetly hide their wheelchair battery chargers or reacher sticks or even urinals. They left things spread out for anyone to see. They cared more about convenience than appearance.

As I began my second half-century on this Earth, I still like to look my best. But now I value convenience and ease and lack of hassle more than ever. Part of it stems from just being older and a bit more depleted of energy. Plus, with age, comes wisdom and the ability to sort out what really matters and what doesn’t.

Time has also eroded away some of my underlying layers of denial. You might even say I’ve moved up from amateur to professional rank. I’ve learned to embrace my disability identity. It’s who I am. 

I’ve earned it. I own it. And I refuse to be ashamed.

http://earthboundtomboy.blogspot.com/2015/09/professionally-crippled.html

THE REALITY OF PAIN

THE WHITE NOISE THAT WON'T FADE AWAY 

BY HEIDI JOHNSON-WRIGHT

I live each day with a rotten reality: I will have pain every waking moment until the day I die.

Until they put me in the crematory and reduce me to a five-pound cardboard box of ashes, I will always be in pain. I’ve known this for a long time, but somehow putting it on paper makes it more real. And a little more frightening.

Rheumatoid arthritis cleaned my clock – plain and simple. When it made its arrival my fourth grade year, my disease spread like wildfire, decimating joints from head to toe. By the time I graduated from high school, I had both shoulders and both hips replaced. Both ankles were permanently fused in place. My hands and feet were destroyed.

From the moment of my diagnosis, I battled not just physical pain but also anxiety and depression. I didn’t know that’s what my emotional suffering was called, or that it was linked to fear of my own mortality and anguish at my body’s disintegration. But I certainly understood what it meant to live in a constant state of fear. Even everyday things like meeting new people made me sick with dread. My finger joints were swollen and inflamed. If someone grabbed my hand to shake it, my knees nearly buckled from the pain. My stomach knotted when I knew I had to climb stairs, taxing my already painful knees and ankles. I held a bottomless pit of despair inside me which I tried time and time again to blot out.

The domino effect of the RA’s destruction was more than any kid could be expected to cope with. Yet no one – no medical professional of any stripe – ever suggested to my parents that I could benefit from talk therapy or even pain management skills. That’s astonishing given that folks in the health professions have long been aware that living with chronic pain makes someone susceptible to depression.

The reality is that virtually all forms of arthritis bring chronic pain and are incurable. They attack, destroy and stay put until they’re good and ready to depart. My disease departed when I was in my early twenties. Although I’ve not had any active RA since Wham! was in the Billboard Hot 100, the damage to my natural joints has been devastating and permanent. I still have to depend on those joints every day to pull on a shirt, walk, stand up from a chair -- anything requiring movement. Even the gentlest of activity taxes joints that have been weakened from the damage done.

It’s like a wooden house whose interior support beams have been chewed through by termites. The termite swarm may depart, never to return. Yet at any time, the slightest stress on the damaged and weakened support beams may cause parts of the house to come crashing down.

Most days, my pain is like white noise. It remains at a level which I can mostly tune out. But some days the pain ratchets up. Like Glenn Close’s character in Fatal Attraction, it will not be ignored. 

I do not write this blog post to elicit pity. I write it out of solidarity with anyone else who must live each day with a painful, irreversible reality. I write it for those who wake up each day, put their feet on the floor and move forward even when they’d rather crawl back in bed and pull the covers over their heads. I write it for those who must accept what seems like it cannot be accepted.

You are stronger than you could ever imagine.

http://earthboundtomboy.blogspot.com/2015/06/the-white-noise-that-wont-fade-away.html