There’s something weird going on with my leg.
I’m interviewing a middle school band director for a book I’m working on, but something doesn’t feel right on my leg and I can’t stop thinking about it. I brush my left calf across my right shin to compare the sensations. The right leg is positively brimming with feeling by comparison.
Yeah, that’s not right.
After the interview is over, I walk to my car. Now that I’m alone, I can fully focus on how odd the skin on my left shin feels—how the hem of my linen capri pants feels as though it’s rubbing evenly across my right shin and calf, but not so with my left. I close my eyes and focus on my legs.
Does it feel different on my left? Does it really? Is this just something strange that will go away?
Days after my interview, I run a disposable razor blade down my left shin. Water from the showerhead above sends the tiny, shorn hairs down the drain beneath my feet. As I watch the hair disappear, I realize it feels like I’m shaving someone else’s leg. If I don’t look down, I can’t discern if the blade is touching me.
Alarmingly, over the course of a few days, the diminished sensation in my flesh heads downward, affecting the top and outer edge of my foot. It heads skyward too, moving all the way up to my outer thigh. Always a good rule of thumb: If numbness is spreading, consult a doctor.
On August 16, 2012, the day of my appointment, I am 43 years old and am sitting, fully dressed, atop a thin sheet of white paper on an examining table in a nondescript suburban health center. It’s the same medical center I visited when I had a similar complaint about numbness in my arm and face when I was a 20-something newlywed.
I already have my suspicions. I’m a reporter at heart. I narrow down the possibilities: a herniated disc, Lyme disease, and multiple sclerosis. I’m leaning toward a herniated disc because I’ve had mild back issues. I’m not too worried.
My doctor says she’s going to order a panel of blood tests, looking for Lyme disease and issues with my thyroid. She also orders an MRI.
Several days later, I’m driving in my SUV when my cell phone rings. It’s the doctor’s office. My numbness, as of this point, has finally stopped encroaching on new areas of my body. I pull off the road.
“Can you read the results to me?” I ask after I put the car in park.
“Well…,” There is a long pause, the kind of pause a patient usually hears from a nurse who is reluctant to share information she’s not sure she’s authorized to share.
She tells me there is a large growth, “a mass,” at the base of my brain on top of my spinal cord. This is not at all what I am expecting to hear. What I expect and want to hear is, “Everything’s fine, but you have a small pinched nerve.”
The word “mass,” in any medical context, is never good.
“Cancer?” I ask, my voice involuntarily squeaking. “No…,” she says haltingly. She advises me to obtain copies of the MRI and consult with a neurologist. They think I might have multiple sclerosis.
After hearing news of the “mass,” I pull out my laptop when I get home and search the internet for information about multiple sclerosis, knowing full well that by doing so, I cannot un-know whatever I may find. I will not be able to extract the fear that will be lodged in my gut once I look at some of the websites. I will not be able to stop envisioning what my future might look like if I have this disease. My vivid imagination will take this information to all sorts of places when I try to go to sleep at night. Nonetheless, I click on the first legit source that crops up, figuring the National Multiple Sclerosis Society should know its stuff.
“MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body,” the site says. I focus on the often disabling part. “The cause of MS is still unknown—scientists believe the disease is triggered by as-yet-unidentified environmental factors in a person who is genetically predisposed to respond.”
The site does an excellent job breaking down the nuts and bolts of the disease. In essence, it says, the protective nerve insulation (myelin) in the body is destroyed, and that destruction interferes with the communication between the damaged nerves and the brain and spinal cord.
But what about this disabling business? Do I really want to know how bad it can get? I ask myself, knowing it won’t be hard for me to envision worst-case situations. Yes, I decide, I want to know.
Most common symptoms, according to the National Multiple Sclerosis Society, include: fatigue, walking difficulties, numbness or tingling, spasticity, vision problems, bladder problems, sexual problems, bowel problems, cognitive changes and depression. Less common symptoms: Tremors, seizures, headaches, hearing loss. There are photos of smiling people in wheelchairs.
I stop reading and close my laptop. I don’t want to know any more. I’ve read enough.
It’s 2017, five years later. As the culmination of my book project gets closer, specifically the launch party, the more apprehensive I get that multiple sclerosis will ruin it for me, take me off my playing field. As much progress as I have made in trying to accept my post-MS limitations and alterations to my lifestyle, the road to making peace with this disease is winding.
The school principal, who features prominently in my new book about his middle school’s student jazz band, steps to the maple-colored podium. As he calls me up to the microphone on the right side of the room, my edginess completely dissolves. In front of me is a community of friends and family. Behind me, the promise of young musicians and their beloved band director, the guy I was interviewing when I experienced my very first MS symptoms in the summer of 2012. I am surrounded, on all sides, by love, by people who had faith in this book, in me.
I do not fumble my speech. I do not slur my words. I do not faint. My knees do not buckle. Members of the crowd rise to their feet. A standing ovation. I’ve never had one of those before. The band director, in his bright cornflower blue shirt, moves in for a bear-hug. I hug him back and allow the warmth to sink in, sink down to my bones. In this moment, I am not afraid.
I’m going to be okay.