Chronic Disease: The Chip on My Shoulder

Most people do not see, or care to notice, suffering all around them — that has been my reluctant observation for as long as I’ve been sick, which is most of my adult life. Granted, I may be hypersensitive, but their indifference is often obvious, and it hurts. 

I used to ride the crowded subway up to my kids’ school in the Bronx, often standing as the train swerved its way along the bumpy tracks. I frequently noted that when we traveled through Harlem, fellow passengers would offer me a seat, even elderly ladies who had no business standing. People there seemed to identify with anyone limping his way along life’s path.

Back in the comfort of more affluent climes, though, I rejoined the army of the unseen. Those around me were not mean. I am certain they did not wish me ill. They just didn’t notice. As I have observed often — in this column and when addressing various disability and illness affinity groups — it seems that those around us can’t be bothered. I’m angry at their indifference, even though I understand it.

This summer, though, I found myself marveling at the generosity of strangers.

On one occasion, my wife, Meredith, and I were spending time on the beaches of Cape Cod. My problem negotiating the beach was simple: The inability to lift my right foot (a condition known as foot drop, which is common among those with MS) made it difficult to walk through the deep sand, or to amble down a steep sand dune. 

Did I say difficult? Make that impossible.

So there I was, leaning heavily on Meredith, who also happened to be carrying a folding chair for me and a beach blanket for us to lie on. She was humming away with each step, even as my cane disappeared into the sand like I was drilling for oil. I was trudging down the dune, thinking each step might be my last.  Suddenly we were surrounded by young guys who emerged from every direction, took everything out of Meredith’s hands and grabbed me under the shoulders to steady, if not to carry, me.

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