THE DAY I BARED MY DISABILITY

Wearing Nothing but Eyeliner and Pearls

By Heidi Johnson-Wright

Disrobing in a dusty, boarded-up hotel for a complete stranger didn’t bother me. But when the cops showed up, I have to admit it got a little weird.

But before we get to that, let me tell you a little about myself. I was born non-disabled. 

Then one day when I was 8 years old, I awoke and could barely raise my left arm. Pain – deep, sharp and gnawing — had settled into my shoulder. I found it baffling. My parents dismissed it as one-too-many handstands. They were sure it would go away. But days turned to weeks turned to more than a month, and my pain only grew worse. The tomboy who used to climb trees as well as any of the neighborhood boys was earthbound.

Rheumatoid arthritis hijacked my entire body, from my jaw down to my toes. Over the next five years, the arthritis roared like a freight train: catastrophic, unstoppable. I lived with severe pain every day. No drug or therapy had any effect. By high school, my shoulders, hips and knees were destroyed. The summer before I turned 16 – while my friends were getting their drivers’ licenses – I had both of my hips replaced.

During my adolescence, I had no one to talk to, no manual to consult about not only becoming a woman, but a disabled woman. The only time my body was discussed was in the context of medical treatment. Life as a patient meant a lot of disrobing and examinations. I felt like an inanimate object to be stared at, poked and prodded by docs, nurses, X-ray techs, PTs, etc. In fact, my arthritis clinic was used to teach medical students.

One time when a particularly cute male med student was observing, my doctor commanded me to walk down a hallway so he could observe my gimpy gait. While strutting along the “catwalk,” I felt a breeze behind me. I ignored it and made my turn, walking back toward the group of white lab coats. Then more breeze. The gown was coming untied, I was certain. I could feel it gaping open to reveal my granny panties. My face grew hot with embarrassment. Adolescent girls’ diaries should be inscribed with purple prose about secret unrequited crushes, not about the shame of being used as a visual aid while wearing a hospital gown.

And body shame was my constant companion for years. I used to think acceptance was an all-or-nothing thing: you either accepted something completely or not at all. I eventually learned that it’s much more layered and complex than that. Even after I thought I’d accepted my disability, I still felt pressured to pass as non-disabled. I forced myself to walk when I should have used a wheelchair. I tried to hide my scars. I was hesitant to let others know when I couldn’t physically do something. I felt ashamed simply for being different because different meant inferior.

Full story and fully nude photo at the Mighty -- follow link here

To Anyone Else Who Must Accept a Life of Chronic Pain

FROM THE MIGHTY -- We face disability, disease and mental illness together

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 (RA) 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 20s. 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 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 cannot be accepted.

You are stronger than you could ever imagine.

http://themighty.com/2016/04/accepting-life-of-chronic-pain-from-rheumatoid-arthritis/