January 13, 2011
“The doctors who read the MRIs think they may be seeing an aneurysm in your brain,” my neurologist reported. A throbbing silence permeated my head. I could not process the information, could see only my children’s faces looking at me — and the doctor — in confusion. I wasn’t terrified, only cold; a chill ran down my spine.
A week before I had gone for a routine MRI, common for people like me with long-standing MS. These procedures have patients lie flat at the narrow entrance to a tiny torpedo tube, then get pushed deep into the machine, unable to move because the quarters are so tight. My nose itches the moment I am swallowed by that chamber of horrors, where thunderous noise travels up and down your body for an hour or even 90 minutes.
The follow-up exam took place just as my wife, Meredith, and I and the kids were about to leave for Jamaica on our first vacation in years. My shorts and T-shirts and books were already packed. “Where is this cerebral IED?” I asked the neurologist.
“Next to your pituitary gland,” came the immediate answer.
“Isn’t that deep in the brain where nobody can get to it?” I asked.
“There’s only the suggestion of an aneurysm,” she said.
An aneurysm is a blood-filled bulge in a blood vessel, usually an artery, resulting from weakening, often caused by disease. An aneurysm can lead to a stroke, a bleed that cannot be stopped in remote areas of the brain.
“Get an MRA” — or magnetic resonance angiography, a detailed scan of the arteries in the brain — the neurologist said. “We’ll know much more after that.” Of course, she was going away for the holidays, as was I. A week of ambiguity and worst fears unleashed lay ahead. The way I saw it, this was a life-and-death situation, and there were not enough piña coladas in our tropical paradise to distract me from what might overtake my future. How does anybody process possibility?
I decided to focus on the fact that my oldest child a college senior, was showing a new taste for Cuban cigars. His slightly younger brother and his sister, about to graduate from high school, were buying rum drinks at the bar on the beach and signing my name. All are solid citizens in real life, and those distractions were not carrying the day. It was time to get serious.
Living with a chronic condition such as MS requires a variety of coping mechanisms, one of which is repeatedly reminding yourself that things could always be worse. As difficult as our lives are, we’re probably not going to die next week or next month. But suddenly, with the possibility of an aneurysm lodged deep in my brain, my coping arsenal had just lost a weapon.
Staring down the barrel of a gun is very different from dealing with a disease that merely diminishes the quality of life. Suddenly, my long-standing problems seemed like child’s play. I do not want to die. I need to see my children finish growing up, and I need to meet their kids. I want to grow old with Meredith.
Maybe we do not appreciate what we have until we are faced with losing it. I may end up in a wheelchair from MS. That has been a worst-case scenario for years. Okay. Probably I can live with that. And my eroding vision — well, perhaps I can handle that if I can bargain for enough years to see who the next generation marries and catch a glimpse of the kids they produce. There is no shortage of Faustian bargains when we’re playing for keeps.
I lounged in the warm winds and faced the fact that I was upset. I had kept high emotion at a distance for decades, dealing with disease. There was no hole to crawl into now. Meredith kept urging me to wait and forgo jumping the gun. That struck me as the classic partner position. I could not postpone the sense of impending loss. When we returned home to learn that the critical test was negative and all I was losing was sleep, I groped for meaning and closure. I found neither, because life is precious, and there is no shortcut around that.