Why MS Can Be So Boring
For me, multiple sclerosis happened at an inconvenient time. It arrived like an unwelcome neighbor tapping at my front door to sell raffle tickets, or a black-suited Jehovah’s Witness eager to explain why only 144,000 people will go to Heaven. Such interruptions shattered my concentration while I was writing, dating, trying to catch up on laundry during the weekends, changing the cat litter and getting my monthly cut and color. Life was happening, pedestrian as my life has always been. Nothing exciting, but I’m no thrill-seeker and never have been. A quiet, reflective, uneventful existence was what I was going for, the kind perfectly fitted to my writer’s sensibilities where more is always going on inside my head than outside it. I didn’t go looking for trouble. It found me.
The pursuit of a diagnosis
Boring is definitely not the right word for how MS felt at first. It caused stress and upheaval, confusion and worry. I was physically unable to work or do much else. I had to take short-term disability from my job and see doctor after doctor to find out what was wrong and get it treated so I could go back to my mundane life. As every person with a chronic illness knows, the pursuit of a diagnosis is one of the most nightmarish, stressful, maddening, heartbreaking ordeals we can experience. Like the villain in an intense episode of the FBI procedural drama “Without a Trace,” multiple sclerosis is the thieving kidnapper that takes us from our loved ones, our community, knocking off balance that tiny space of equilibrium we maintained. Agent Jack Malone always finds the lost loved one, often at great personal expense. Had Jack been on my case instead of that clown car full of medical buffoons, the mystery might have been solved in less than an hour, commercials included.
The heartbreak in that real life/fiction rift lies in the fact that the character, Jack Malone, cares. With few exceptions, he has a personal stake in solving each case. Throughout the series, Jack’s level of investment proves damaging to his mental health and personal relationships. By excelling at his detective work, he loses so much in his intimate life. We feel sad for him, but mostly grateful. Nobody in real life cares that much. Many of us who have visited an ER for our MS symptoms and spent five minutes in numerous doctors’ examining rooms earnestly explaining our symptoms can identify the residual effect as a drive-by clowning. It ravages us to the point of madness to experience such institutional apathy and cynicism. Investigative work comes at a great personal cost to ourselves, not to our medical investigators. No doubt there are Jack Malones out there in the medical community, but I’ve never met one.
Time hurdles on in spite of our pain and disillusionment. What felt like death by a thousand paper cuts at first settles in to become a solid diagnosis and years of treatment. Once a shadowy specter pursuing us in our nightmares, it is then named, known, despised, and ultimately accepted. For me, that’s when the boredom set in.
The satellites of disease
Boredom, in my experience, is also steeped in resentment. The satellites of disease are frustration, restlessness, and anger, all in permanent orbit around a fixed object that deserves none of those special privileges that come with having a gravitational field. Multiple sclerosis doesn’t care about the emotions in orbit around it. Its mission is to gnaw away at the CNS. But it’s nothing personal, and I find that maddening. It isn’t self-important and demanding, making slaves of us with glee and abandon. Observing it at work is like watching an oil well pumping crude out of the ground. Its process is as boring as its effect is life-changing.
Do you have a fear of needles and take medication that requires injection?