January 1, 2010
A woman I know struggles to walk, even with a cane, but she angrily rejects her diagnosis of multiple sclerosis. Another would rather stagger and sway like a drunk than admit to her illness.
Me? I just don’t talk much about it.
This seems to offend those who think people should wear medical records on the outside of their clothing, as they do designer fashion labels. Years ago, I sat at the edge of the narrow examination table, listening while a neurologist lectured medical students as if I were not even in the neighborhood.
“He is in denial,” the doc announced, gesturing at an ostensibly inanimate object: me, sitting mute. “I deny that,” I blurted out, probably surprising some that I could talk.
The medical students thought I was joking. Actually, I was angry, sick of smug neurologists. I’ve grown tired of doctors long on opinions and short on insight picking apart my approach to an illness that I’ve been battling for decades.
It’s not just the medical community coming down on me. Friends and family have long accused me of being in denial, hiding from reality and failing to address the endless problems that go with multiple sclerosis. To them, my jokes about my illness seem to mean that I am not taking the disease seriously. Apparently I do not cast my eyes down enough and whisper, “Yes, I have MS, your honor. Take me away.”
Do people think I am having too good a time with this incurable degenerative disease that can decimate my life?
Actually, I am not having a very good time at all. Numbness and the frequent inability to move my body at will are no treat. Loss of control is horrifying. Yet I do not spend energy beating my breast over worst-case scenarios. Bathing in grimness seems pointless.
Instead, I have chosen to live a life that assumes limitless possibility. It is not that the disease is not here and taking its toll. However, until proved otherwise, I am in charge and fully intending to win. Call it hubris, but I believe I am cagier than a collection of errant cells.
Let’s get one thing straight: I do not deny I have a debilitating disease with a scary name. But denying the inevitability of the outcome is a different story. That is my prerogative, and I defend it every chance I get. A little bit of magical thinking is a recipe for people like me to get up every day and go back at it. And, yes, climbing back into the ring after taking a licking for days on end does require a certain reservoir of chutzpah. Call it denial. To me it is performance art. Why it irritates others so much is a bit of a mystery.