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
