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/

DOING THE DME SHUFFLE

EARTHBOUND TOMBOY

BY HEIDI JOHNSON-WRIGHT

 

Let’s talk about a tricky dance with a lot of steps, and I’m not referring to the tango, waltz or minuet. It’s a dance familiar to everyone who uses a mobility device and has health insurance. I’m talking about the DME shuffle.

DME stands for “durable medical equipment,” the jargony moniker used by the insurance industry to refer to equipment like wheelchairs and scooters. It also refers to things like oxygen tanks and CPAP machines.

I’ve never worked in the insurance industry so I don’t know its inner workings. But I’ve been a consumer of insurance coverage for decades, so I’m an expert of sorts on navigating from the outside of what feels like an impenetrable, byzantine system. And despite my years of experience, I never cease to be amazed by its frustrating unwieldiness.

Take wheelchairs, for instance. I’ve been a wheelchair user for 30-plus years. I need one to traverse distances of more than four or five feet. Simply put: I gotta have a functioning wheelchair about 16 hours of each and every day, or I’m screwed.

Most of the time, it’s cool. But things get real tricky when it becomes evident that my chair is getting to the end of its life span. One can only repair and hold something together with chewing gum and paper clips for so long.

I can’t predict when the chair will crap out for good. And because it’s essential to my most basic functions, I don’t want to wait too long. Why? Because acquiring a new one is about a six-month process.

The process begins with getting a prescription and a letter of medical necessity from my doctor. Since he’s busy guy, I supply him with the essential info and suggested language he needs to write them. Once I’ve got these documents in hand, the real fun begins.

 

Insurance providers typically subcontract with other companies to provide DME. The DME provider’s bread and butter, though, is primarily diabetic supplies and off-the-rack walkers. When it comes to wheelchairs, they try to push the bare bones basic, one-size-fits-all variety. Give them your height and weight, and they’ll order you a small, medium or large. Those are fine for the retiree who needs one only for trips to the mall or county fair.

But I use a chair many hours every day. I must be evaluated by a rehab professional to determine the type of chair that can accommodate my functional limitations and ergonomic needs. The seat must be high enough from the floor so I can stand up unaided. The back rest must provide comfort and support in the right places. I need a seat cushion that supports my posture but doesn’t aggravate my chronic sciatica. The underside of the chair must accommodate a large bolt that can lock the chair into my van’s tie-down system. I’ll spare you the remaining details.

THE PRISON OF DENIAL

FROM THE EARTHBOUND TOMBOY FILES

By Heidi Johnson-Wright

I used to think denial was like a light switch: either all the way on, or all the way off. For example, you either believed in evolution, or you clung to your knuckle-dragging dogma and denied its existence altogether.

But like so much of human behavior, denial is complicated, shaded between stark black and white with many hues of gray.

Denial can only be put to rest with unconditional acceptance, and acceptance is a long, multi-layered process. I know this all too well. It took me many years to fully accept my diagnosis of rheumatoid arthritis.

No one wants to accept that something terrible has happened to them or to a loved one, especially something utterly undeserved. We want to believe that, all things considered, the universe is fair. The good will be rewarded; the evil, punished. 

What if the terrible thing that happens is starkly real today, but illusive tomorrow? A severed leg ain’t growing back -- ever. You either accept it or you’re going fall down a lot.  But rheumatoid arthritis, or RA -- my disability, is often episodic. Just when you think you can’t take one more miserable day, it eases off for a bit. This only encourages the false hope that the medication, prayers or copper bracelets are actually working.

None of the many forms of arthritis have any known causes or cures. Lots of theories, nothing for certain. This always leaves the door open to “someday they’ll find a cure.” I can tell you that – if you’re not careful -- that door leads straight to the dungeon of denial.

Today, there still are no cures for RA but there are many good medications that can effectively manage symptoms and prevent joint damage. But back in my day if you had the disease in severe form, effective treatment options were sparse.

After half a century of living, I accept that I will always use a wheelchair for mobility. That I will never climb the terraces of Machu Picchu, or wear a pair of high heels.

If you’re struggling to accept a disability, don’t beat yourself up. It takes time, lots of crying, a good sense of humor and perhaps some talk therapy.

Stay strong. Fight past the shame of “otherness” imposed on us by society.

Ultimately, acceptance isn’t defeat. It’s liberation. 

http://earthboundtomboy.blogspot.com/2014/11/the-prison-of-denial.html

WE NEED TO MAKE THE MEDICAL BUILT ENVIRONMENT ACCESSIBLE TO EVERYONE

THE MOST DREADED DISEASE OF ALL

By Heidi Johnson-Wright 

I like my breasts. I truly do.

They’re nothing special -- certainly not Playboy caliber. But they’re mine. And I’d like to keep them healthy.

Which is why I was disturbed the other day when I passed by a pink mobile mammogram RV. It was parked on a public plaza to motivate women to stop by and have breast imaging done.

I’m all for that. Anything that can detect cancer early on is a godsend. But what stuck in my craw were the four steps at the entrance of the RV. I circled the vehicle but saw no ramp.

I guess the message is this: access to medical care doesn’t necessarily include access for folks with disabilities.

In the interest of full disclosure, I’d already had my annual mammogram done at a world-class cancer clinic. But I thought about other women with disabilities in my community who, for whatever reason, may not able to go to a conventional facility for imaging. Shouldn’t they be able to stop in and get services at the mammogram RV, like anyone else?

It got me thinking. I thought back to my mammogram the previous month. Although the machine’s height was adjustable, there was no way I could have contorted myself into position without standing upright. Because even though I use a wheelchair as my primary means of mobility, I can stand and walk a few steps.

What about others – such as women with spinal cord injuries -- who cannot stand up for a few moments to complete the imaging? And why aren’t people designing imaging machines that are accessible to people with disabilities? If such machines exist, why wouldn’t a major cancer clinic with a stellar reputation have one?

Then I remember how, a couple years ago, I needed a breast ultrasound to supplement the mammography. That same clinic’s ultrasound rooms were so small, I had to park my wheelchair in the hallway and walk into the room to have the test done.

This made me angry, which then jogged my mind further. I remembered how I’ve been going to the same rheumatologist – a wonderful doctor whom I adore -- for 13 years. And though his clientele consists primarily of arthritics who have chronic pain and struggle with limited mobility, none of his exam tables have adjustable height. Should he need me to get up on the table, I would have to either pole vault onto it, or be lifted by a couple of his staffers. Both options are unpleasant and quite frankly, should not even have to be considered.

More memories flooded my brain. I recalled my week-long hospitalization after major hip surgery last year. My room was located on the orthopedic unit, yet the bathroom was inaccessible to me. My surgeon allowed me to get out of bed and use the commode -- even encouraged it. But I couldn’t because the hospital could not provide a garden-variety seat riser. I was also denied a shower because the bathroom had a tub shower but no transfer bench.

Access to health care, from financial and even geographical perspectives, is challenging enough as it is. Why should folks with disabilities have additional hurdles that make them struggle for -- or even  forego -- medical care in one of the most prosperous, developed countries in the world?

I ask the question, yet I already know the answer.

Because ableism -- discrimination in favor of able-bodied people -- is as prevalent and destructive as cancer has ever been.

http://earthboundtomboy.blogspot.com/2014/11/the-most-dreaded-disease-of-all.html