Browsing Tag

MS Society


We Tell Ourselves Stories

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.

Cycling England Europe

London to Paris sur une Bicyclette Day 2: Calais to Abbeville

Day 2 and I use every piece of advice, from trite euphemism to true wisdom, to get me through the 78 hilly miles. There’s Larry, my L.A. yoga teacher and former zen priest telling me “so what,” when I complain my feet fall asleep during zazen (and, as it happens, when cycling excessive distances). Richard, the ex-Navy Seal/zen priest in training/workout instructor/and, more recently, cable television host of a program about the weapons of war for which he gave himself the nickname Mack, is also there. He’s shouting “not dead, can’t quit,” at me just like he did when I was doing push ups at 6:30am in the Santa Monica zendo. My colleague Ian is also on hand, nodding approvingly as I wash down my sixth Nurofen of the day with a dose of neat black currant cordial. Ian had advised me painkillers and a slow and steady pace would be my best friends for this bike ride, and so far he’s been right on both counts. The cordial and jelly babies are also reliable acquaintances.

The terrain today is punishing and scenic, and seems to be populated solely by lazy, white French cows who sleep in the meadows like dogs in the shade. The villages we ride through are ghost towns, with broke down mini-chateaus and those concrete bungalows with brightly painted shutters the French seem to favor. Later there are American scale stretches of agricultural land, so vast they make the Cotswolds seem like it’s engaged in boutique farming. Despite all the greenery it somehow feels desolate in these parts.

Over dinner at our hotel we are joined by a man and his friend who are riding for the same charity, the MS Society, that I am. We get to talking and I learn that he suffers from MS and was previously in a wheel chair. His story should be inspirational, but the more he talks the more I dislike him. I find him narcissistic and feel guilty about it, despite reminding myself that disease doesn’t discriminate when it comes to the likability of its victims. When we are back in our hotel room, I ask husband if he had the same reaction and am surprised when he tells me he liked the guy. Husband suggests my reaction might be more about my discomfort with confronting MS rather than the man’s arrogance. I decide to sleep on it.