Chronic Disease: The Chip on My Shoulder

November 8, 2011

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.

When we left the beach, a different group appeared as the traveling triage squad. My right foot had grown so weak that one fellow walked directly behind me and physically lifted my right foot each time I went to take a step on it. We had become a traveling road show. The guys saw us to our car and would accept no money. They were only acting as good people.

The chip almost fell off my shoulder that afternoon. I say “almost” because I still am trying to understand why the generous spirit showed itself then and there.  The answer may be that people like me stumble down the streets of cities and towns all the time, adamantly struggling to make it on our own. Usually we succeed and do not appear to be in any particular need. On the beach, my struggle was obvious.

On buses and trains, I offer my seat to anyone who appears to be in worse shape than I, and always to seniors. They eye my cane and I tell them it is only a prop. They smile and take my seat. When another offers me a seat, I decline, for reasons I am hard-pressed to explain. Maybe the idea of accepting the seat of another makes me feel weak.

And then I complain.

Anger at an illness is conveniently transferred to people. Other human beings become useful targets for playing out the tough emotions we feel as victims, though most despise that word. The challenge is to bypass the victim mentality and to see and believe in all that is good in our lives. We should not need whipping boys to indulge our frustrations. Our broken bodies do not define us. We should toughen up and leave others alone. Help from another is great, benign neglect acceptable.

2 Responses to Chronic Disease: The Chip on My Shoulder

  1. Cindy Zuspann January 2, 2014 at 11:00 pm #

    I,also,have secondary progressive MS,was diagnosed at 28 and could relate to every word and situation you expressed. I try to be optimistic and always want to remember that there is pain everywhere But I felt a comrade when you stated you are still not okay with where you are,I have had much guilt over not being able to accept where I am.
    I have tried everything with the exception of stem cell. I have been off meds for 10 years and was thinking about starting Glynna…Hope…prayed to God to shut the door if not right because I could no longer be trusted to try something else
    Your honesty and insight has given me hope and my answer.thank you for sharing and reminding me that I’m okay and one of the strong and brave and not damaged goods.

  2. zoltan February 2, 2015 at 11:06 pm #

    Your logic is over simplistic & idealistic. i am a 40 year old man paralyzed fro the waist down since birth & constantly have very beautiful ablebodied women opening or offering to open doors and pull back chairs for me. I find this deeply emasculating, de-sexualizing & immensely humiliating as a man. It speaks of an inherant instinct within the overwhelming majority of ablebodied women who simply see men who are permanet wheelchair users as inherantly asexual, neuter & eunuch. Im sorry but that will never be ok with me. Zoltan