The language of multiple sclerosis has come under great scrutiny lately–in my own mind, that is. I wish I could say the impetus for this re-reckoning came solely from a restless frustration with the worn phrases and word choices of our disease discourse, but it was the initial one. An opponent of cliché, I feel a relentless drive to pick fresh verbs and nouns that are so precise as to evoke the strongest emotional recognition of the action or image in its profoundest state of revealed truth. War language has worked very well in achieving that.
A new understanding of MS
Disease has indeed felt like the enemy within, our bodies the battlegrounds for surprise attacks, with medics sprinting across the line of fire to push a vial of morphine into the arm of a downed comrade torn apart by a military-issue grenade. Victims all share things in common, after all. We have been wounded by some form of aggression designed to maim or kill. Being a disease victim certainly drops us into the slot of the chronically collaterally damaged, and it’s an easy fit. But time passes, while our bodies, our environment, and our thoughts and feelings become altered and modified. Just like anything else that was once a good fit, time causes body and fabric to decay, shrink, expand, weaken, fade, and fall out of style. The times they are a-changing, and the newfound understanding of MS pathophysiology begs a different mode of description.
Reading through some health articles the other day, I stumbled on a cancer opinion piece. It opened a window for me, allowing a fresh breeze to blow the dust off my clichéd writing and point me in a new direction.
In a July 21, 2017 CNN article by Xeni Jardin, the author explains why she rejected the war metaphors of cancer after receiving her own cancer diagnosis. She said the well-intentioned words of encouragement from friends and family felt strange to her right from the get-go:
You’ll beat this.
You got this.
You’ll win the battle.
Cancer isn’t as tough as you.
You have a positive attitude and you’re a fighter, so I know you’ll get well soon.
Jardin learned that cancer was her own cells going rogue. That cancer is a disease of cellular biology in which some cells stop obeying the good instructions they’ve been given. They hog the body’s shared resources, and replicate over and over again, until the body’s own organs cannot carry out the basic functions we need for life to continue. Suddenly all the combat language was confusing. She asked herself: Am I the invading army or the battleground? Am I the soldier or a hostage the soldier’s trying to liberate? All of the above? If the chemotherapy and radiation and surgery and drugs don’t work, and I die, will people be disappointed in me for not “fighting” hard enough?
Her questions resonated deeply with me. Cancer has been around much longer than MS and we have therefore borrowed a lot of cancer terms to describe our disease, words such as relapse and remission. We’ve also borrowed war metaphors from cancer language. Now I see a shift away from that as I read Jardin’s thoughts. And just as we’ve embraced the war language of cancer, so should we grow beyond it and move along to language that better fits our new awareness of the biology of our disease.
Multiple sclerosis patients are noted for being the best-informed patients about their disease of any disease group. We know that MS happens when immune cells go rogue. They still do their jobs attacking invading viruses and bacteria, but they go into overdrive and attack the myelin coating that protects our axons, too, causing nerve damage and disability. The more we learn about the disease and its treatments, and the longer we accumulate our own experiences over time, the clearer it becomes that our disease outcomes are connected to medical treatment and the impersonal randomness of life.
Jardin writes a plea to just call it what it is. War is war. Cancer is cancer. When we die, just tell the world what happened. Plain and simple. No euphemisms, no flowery language, no metaphors. We lived, we died, we are still loved.
When I think about the end of my own life, one lived with MS, Jardin’s thoughts make me feel free of the burden of winning my life in favor of merely living it.
What do you think? Do you embrace the war language we use to describe your MS journey? Or are you dissatisfied with the language of disease? Do tell!