Last night in the bathtub I read an article by Oliver Sacks about a man with lesions on his brain who developed alexia, the inability to recognize written language. It got me thinking about my very own lesions, and in turn MS, and in turn a man I met on the second night of the London to Paris charity bike ride. He and his friend joined husband and me over dinner at the hotel. He was wearing an orange T-shirt sporting the cheery star-spangled logo of the the MS Society, the charity I was also supporting, and when we got to talking I quickly learned that he suffers from MS. We exchanged disease synopses, much like you might exchange your reflections on a recent trip to Tuscany if you met someone and found out he or she had also just been there, had stayed in the very same villa as you as a matter of fact. (In this part of Tuscany there are wheelchairs and neurologists.)
I asked him about the time between the recurrence of his symptoms, a key factor in the diagnosis of MS. Once he gave me the answer I wanted – that his symptoms were so close together his doctor couldn’t tell them apart—I didn’t want to hear anymore. I had heard what I needed, which was that his experience with symptom recurrence was different than mine and, by extension, this meant I wasn’t going to develop MS. But he wanted, even needed, to tell me more. It was like he was performing a duty of care in dispensing his expertise on the disease to me, the potential new recruit. And so he told me more. More about the best doctors in the U.S., where he lived when he was diagnosed, and London. More about the need for a holistic approach to treatment. More about what an asshole banker he had been before he got the diagnosis, and how MS had made him a better husband and father.
I understand better than anyone that disease compels you to craft a narrative to rationalize it, and becoming a better man was the main arc of his story. And yet it was a story that made me uneasy the more I sat and listened, picking over my beef stew and pomme frites. It should have made me feel better. It was not my story after all. I was not, as far as I knew, an asshole, and was definitely not a banker or parent. And yet these facts establishing our separateness brought me none of the lazy comfort I’d allowed myself earlier when I differentiated this man’s fate from my own based on the rate of his symptom recurrence.
That night I wrote on my blog that I found the man with MS narcissistic and unlikeable, which of course in retrospect was unfair. Husband had surprised me that night by questioning my assessment of the man’s behavior since we usually agree on this sort of thing. He suggested my reaction was more about my discomfort with confronting MS than the man’s arrogance. And pain me as it might to say it, husband was right.
