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/
