Shortly after my diagnosis with Multiple Sclerosis I would be in a public place and see people who I suspected had MS. It was as though I was more oblivious before my diagnosis to people who had difficulty walking, were using a cane, walker, or wheelchair. Now all of a sudden my attention was riveted towards others who were having mobility issues. Coincidentally I met a man in a medical waiting room and he just happened to have MS but was at more advanced stage of this disease than I am. I write about our conversation here and how it gave me a greater perspective on how this disease is a very different experience for each individual who has it. I do hope you share your perspective as well.
I saw the man while I was in my general practitioner's waiting room. He sat two seats away from me staring off into space. Situated in the space before him was a walker. He looked fifty-ish at most. I didn't think age had anything to do with his condition and I guessed right off that he probably had Multiple Sclerosis. The silence was broken when he said out loud, "I like my doctor. Do you have doctor "X"?" When I replied that I did, we began to compare notes. I then asked if he had MS. When he said yes I responded with a "me too." At that he said a startling thing: "I hate seeing people who are still walking around and have MS." Something about the way he said it though, made me take no offense. "They didn't catch mine in time I guess," he said forlornly.
I thought about things from his perspective. I suppose I would hate it too, to be seeing what I used to have blatantly displayed, all these walking reminders of loss. It brought to mind when I had experienced both a miscarriage and then infertility for some years. I remember walking around the city during my lunch hour and everywhere I went, there were pregnant ladies. I hated them all. And I hated myself for feeling that way. There was a poem I once read by a woman who has just lost her father to cancer. In her poem she tried to explain that during the days after his death she could no longer bear to see the smiles of elderly shiny domed men who resembled her father. She loathed to see the living image of what she had lost.
So yes I could understand what this stranger was saying to me. In some ways the sight of him and his walker frightened the daylights out of me. "This could be me in years to come," I thought to myself. It seemed to me that after my diagnosis, my world was inhabited by great numbers of people bearing canes, walkers, or riding in wheelchairs. My mind seemed especially cognizant of the sight of metal attached to people. I was suddenly more aware of this population which had simply eased in and out of my periphery before I was diagnosed with MS. One day it seemed almost a spiritual conspiracy of synchronicity. I was going to the library and was hit by some MS symptoms, leaving me to hobble, rather than walk into the place. And everywhere I looked, it seemed to me that someone was walking with a limp or had a cane. Was the universe mocking me or was this a way for me to see my humanity, frailty, and vulnerability mirrored in the faltering steps of others?
I continued to talk to the man in the waiting room. He told me his history with MS and how the doctors had missed it for many years. He told the story I have heard so often that it seems a Jungian archetype by now. He kept telling the docs something was wrong and they kept dismissing him, saying it was stress or even his imagination as the cause of his symptoms. Hardcore proof that his symptoms were not the product of either stress or an overactive imagination was right before him. His walker, the concrete symbol of his disability, was also a billboard announcing to all his previous docs, "YOU WERE WRONG."
As this man vented and became angry in the re-telling of history he made the self observation, "I am full of bile and bitterness." I tried to provide solace with, "You deserve to be. I would be angry too." I knew my words were of little comfort to a man facing a future of impaired functioning. Anger seems too light a word for this instance. Rage seems more appropriate.
It is human nature to make comparisons of our plight to others. Our "luck" in life is only relative to who we are talking to at the moment. We all exist on a spectrum of independence and health. And our little data point can change on a dime. One day we are healthy, active, and moving with ease. Several MRI's later and we can be traveling down a road towards disability. But regardless of where our little data point rests in this health continuum we all do share one commonality and that is...not one of us knows what will happen tomorrow. We are all vulnerable to an uncertain future. Dealing with this ambiguity is both frightening and exhausting. Reaching out to others is one way to cope with the uncertainty of where life will lead us.
I am glad I met the man who described himself as "bitter" while in the waiting room that day. His honesty was refreshing and it allowed me to see myself in his words. Perhaps I have had different life stories to tell, but the feelings were oh so familiar. Life is full of bile sometimes. What else can we do but to share our story with others? Connection and bonding with our fellow travelers is one way we can keep on going despite our seemingly different limitations.
Published On: October 05, 2009