The White Noise that Won't Fade Away

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.

MY CONSTANT COMPANION, or the Creep in My Basement who is Partial to Op-Art Posters, Chevy Chase Movies & Beef-a-Roni

I have a constant companion who never leaves. Even when I’m otherwise alone -- in the shower or tucked away in bed -- my companion is hanging around.

 

We don’t speak. Don’t need to. We intuitively know everything about each other. Know where to find the dark corners of the mind and the cut-to-the-quick places that never heal.

 

We have a long history, my companion and I. It was the summer of 1973, when Nixon was still in the White House and Paul Lynde was the center of Hollywood Squares. It was also when juvenile rheumatoid arthritis claimed me and its signature feature – debilitating joint pain -- showed up at my front door. I thought it was merely a slovenly, uninvited house guest, a ne’er-do-well that would pack up in a few days, maybe a few weeks, then depart. Instead, it moved in and never left.

 

Over the years, I – along with a cadre of medical professionals – have tried to evict it. Tried to send the pain packing by strong-arming it with a pharmaceutical goon squad. At times, we pushed it toward the doorway where my loathsome companion was barely clinging to the jamb by its dirty fingernails. But when I turned ‘round, it was reclining comfortably in a Naugahyde La-Z-Boy in the den, plowing through a 12-pack of Schlitz, belching loudly and tossing the cans on the floor.

 

My companion used to wander the house howling at the top of its lungs. Used to bind me like concertina wire in a cruel embrace. Each day was dreadful but the unpredictable flares were far worse. When my companion tore up the furniture and ripped open walls on intense benders -- I remained motionless. To even sit upright would push me to the edge of a blackout. I remember untold hours spent attempting mental distractions. Counting the bumps on the ceiling. Spotting all the places the wallpaper pattern repeated itself.

 

By junior high, my body grew increasingly unpredictable. As my strength dwindled, my companion’s blossomed. On good days, the microscopic drug goons patrolled my insides with brass knuckles and lead pipes, looking for my companion. But his outbursts could only be quelled a bit, from roaring jumbo jet to battering jack hammer. A knee might flare and make walking even a few steps a nightmare. A joint in my finger or the bones in my hand would partially dislocate and I would have to jam them back into place. My jaw would hurt so bad I could barely chew.

Because the pills I took were about as effective as swallowing M&Ms, my arthritis remained unchecked. My companion moved from the guest room to a basement efficiency apartment. It put up black light Op-art posters and beaded curtains. Ate Slim Jims and Beef-a-roni out of the can. Watched Chevy Chase movies on Betamax while lying on a Murphy bed, clearly in it for the long haul.

Years passed and my bones disintegrated. Joint fusions and replacements -- brutal human carpentry –were my only option for anything resembling a life.

I eventually worked out an arrangement with my companion. It could have a 99-year lease on the basement, but the stairs in between were our DMZ. It could make a tolerable racket, provided I couldn’t hear anything over the soothing sounds of my mental white noise machine.

My companion is still alive and kicking. But most days, I can tune it out. I’ve compartmentalized my home, my heart and my mind. We live our separate – yet very interconnected – lives.

Last Christmas, my companion demanded Netflix download service, a pair of Nike Zoom LeBron Soldiers and a craft beer brewing kit. My reply?

“Stick it where the sun don’t shine.”