Thursday, February 16, 2012


"Do not think of your faults, still less of other’s faults; look for what is good and strong and try to imitate it. Your faults will drop off, like dead leaves, when their time comes."
- John Ruskin, English writer and critic of art architecture and society (1819-1900)

Many years ago, when I was still part of the 9 to 5 world, I was going up in the elevator to work when a woman, a complete stranger, asked me why I was using a cane. Usually I am uncomfortable with such bold invasions of my personal space. However, on this occasion, I told her directly, “I have multiple sclerosis.” Her response surprised me: she said, “it must be so hard for your mother. I know because I have a child with a disability. We feel so guilty for bringing you into the world.” Wow - not the response I had been expecting.

My disease can be extremely difficult for my mother to cope with. She often acts so responsible because of the monumental challenges I face on a regular basis. 

On the one hand, I am fortunate to have a person in my life who cares about me so much. My mother is wonderful, a considerable part of why I am the strong, determined individual I am today. But her concern has its own consequences that I am certain she never intended. While we have a mostly honest, open relationship, we each protect one another. For instance, when I am facing some of the most severe difficulties of my disease, I never want to tell her all of the most painful details because I know she’ll end up worrying even more than she already does.

Conversely, I know she has problems of her own (her husband, my dad, passed away last year; and she has chronic back and stomach troubles, which she never fully reveals to me, among other issues). She is primarily concerned with preventing me from worrying or stressing more than I have to. She realizes stress can be a factor in the evolution of MS, and she doesn’t want to say anything to adversely affect me. While I understand why she does this, I don’t want to be protected just because I have a disease.

If the finger of responsibility has to get pointed at anyone, I suppose it should be pointed at myself. Back in high school when I was a senior, I had a girlfriend who was older than me and a freshman in college. I visited her in the fall of her first year away and found out she had been cheating on me. The shock of the situation caused me to sleep in the bed of one of her friends who had not washed his sheets in weeks, during which time he had mononucleosis.

Many of you know about the triggering affect mono can have on multiple sclerosis. When I look back on this time and the fact that I, too, came down with mono shortly thereafter, it seems especially clear how the disease was launched in my system. So I can blame my ex-girlfriend with a friend whose bed I slept in back then and take some responsibility myself, but the reality is that I developed MS truly and somewhat randomly. I was predisposed to it anyway, right? It has been the hand I’ve been dealt. I have come to terms with it, for better or for worse, over the course of living with it for over 20 years. It’s still amazing to think: Wow, one simple, innocent moment can have such a devastating impact on the rest of one’s life.


As much as I ask my mother to stop worrying, and convince her I am going to be all right, she just can’t do it. And I feel guilty, too, for having this impact on someone I care about. So, mostly out of love, we protect one other from the worst aspect of each other’s lives. But, truthfully, the worst facts do get revealed. They are unavoidable. Even though we don’t want to hurt the ones we love, we can't live in complete and utter denial and secrecy even if we want to. The truth always wins out.

Without question, living and coping with multiple sclerosis can affect everything, especially our relationships. It ends up shaping our lives in unexpected and mysterious ways. None of us asked for this, and so we are constantly adjusting, physically and emotionally. Some relationships suffer. One of my best friends from college drifted away, unable to cope with the effects of the disease on my body. His loss. We learn who our true friends are. And if we keep ourselves open, the disease can also introduce us to people and experiences we never would have expected. I have friends now, as a result of the disease, who are very important in my life. With that said, just because a person has MS, doesn’t mean they will automatically be compatible with you. People who are annoying are still going to be annoying.

So my mom and I will continue our dance, the one brought about by MS. And we will adjust, as we have over the course of living with it, to the physical and emotional hardships we face, part of a family who possesses the facilities to support one another and, most of the time, to navigate the complex challenges raised by the disease.

Thanks and be well,