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Hold your head up, open your eyes

I remember the spring I was diagnosed with MS in 1991. I was stunned and in the grip of fear like never before, yet weirdly alert for a sign.

I remember the spring I was diagnosed with multiple sclerosis in 1991. I was stunned and in the grip of fear like never before, yet weirdly alert for a sign, a signpost, anything to show a way forward through the fog.

One day a new friend stopped by to bring me a little gift and see how I was doing, someone in the same line of work as me. While our children played, she sat quietly with me in that abrupt juncture where my career and life trajectory wobbled off the rails we had been travelling together.

The subtle power of T'ai Chi

Someone she knew, she said, took up t’ai chi when he was diagnosed with MS; it seemed to do him good. Ding! went a little bell in my head: that makes sense. (The bell sounds distantly in the fog; something comes into focus you had not previously imagined.)

In the end, t’ai chi did not become 'my thing', although I still enjoy it informally. At the time, however, my friend’s suggestion set off a train of thought that ran right down my legs to the soles of my feet on the flat floor. It was true, I was losing my balance. T’ai chi on the other hand is all about balance.

It was worth a try. In Philadelphia in those days, acupuncturist and t’ai chi instructor Rolly Brown was better known in folk music circles as a National Fingerpicking Champion guitar player.

Clearly a man who knows how to do things right. So I set off to his studio in the suburbs. You know how, in a dance class or a yoga class, the teacher might come by and make a small but crucial adjustment to your posture? I thought I was doing OK in class, when Rolly stood in front of me, touched my chin, and instructed, “Hold your head up; open your eyes.”

An awakening

Here came another 'ding!' moment, only this one struck miserably, more like a thudding 'da-da-dum...”. Who? Me? Moi? How can this be?' In my cherished self-image, of course I was person with my head up and my eyes open. But now something was off, it was true.

Rolly suggested I go to the park every day. Our eyes like to see green, he said. So I hauled myself there, and sat in exhaustion on a bench, looking around. Gradually I was able to walk longer distances, from bench to bench in the park.

I forget how I found Dr. Roy Swank’s book, but it also made sense. I readily saw myself as a person hungry for more salmon, and I was highly motivated to do what I could to stay on my feet while my children grew.

I tackled stress reduction head-on, since everyone knows stress and MS have something to do with each other, and besides, I was longing to feel more comfortable, not always on edge. Did I mention the little book my friend gave me? It was called The Miracle of Mindfulness. 

You are not alone

Here’s the thing: in those days, and right along, I felt my way forward in isolation. There was hardly another MS patient I knew who was trying to live with it the way I was. Really, until now.

So, I am very glad to make your acquaintance. Dr. Jelinek’s recovery program has what a person needs to begin to heal oneself, or, like me, to renew those efforts, now with the support of a community.

I like the blunt point of view – MS is a modern, lifestyle disease of developed countries – and the line of reasoning that follows: changing our lifestyle can make difference in the course of the disease.

The scientific evidence is mounting. So go ahead and hold your head up; open your eyes. You are not alone. Home again in New England, I send out a big hello from Massachusetts to the worldwide OMS Community.

Marilyn McArthur 

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