Wednesday, May 9, 2012


It seems like everywhere I turn these days I see grey: the erotic novel 50 Shades of Grey is a monster best-seller that Saturday Night Live poked gleeful fun at this past weekend (see below), and Liam Neeson’s film The Grey arrives on video this week. Is it a coincidence then that my mind has been turning around the color grey and its relation to multiple sclerosis? Or some kind of destiny?

Let me begin by explaining that when I was younger (I am 47 now), I found it easier to reduce my understanding of issues and relationships to black and white. One politician was good, and another was evil. If a marriage ended, it had to be one person’s fault, the other the victim; I didn’t have a sense of mutual culpability. It sure made life easier: I didn’t have to analyze or understand the greater complexities of life. 

I believe I turned a corner when my wife’s co-worker’s family was described a few years ago as perfect, devoid of any problems. It just didn’t seem possible to me: how could a family not have problems, how could everyone be perfect? Now I’m not saying I wished this on anyone, but when a divorce recently rattled the family, I wasn’t especially surprised.  Life doesn’t usually spare a family from some measure of pain or adversity. Very few just get off, have a “white” life. After thinking it through, I realized, sure, some have it harder than others, some easier, but generally life is grey (even amid the spectacular color of spring here in the Northeast).

This is a long way of saying that for those of us with MS, life can be greyer than it is for people who don’t have to live with a chronic disease. We get to ask ourselves questions like: Has the disease made me a better person? Is it a gift that has afforded me an opportunity to grow in ways I never would have otherwise? Like many of us these days, I do a fair amount of reading on the Internet and regularly encounter this attitude, one I cannot embrace. There are many people sharing quotes about perseverance, pictures of  kittens and positivity.  On the one hand, I get it: If it doesn’t kill you, it will make you stronger. On the other hand, I can’t get all mushy about a disease that picked me. I played no role in the decision-making process that led to my contracting the disease: it was just, as Bob Dylan said, “a simple twist of fate” (see below). I didn’t choose MS; MS chose me.

The flip side of all the positivity on the Internet is anger about the disease that has changed our lives in so many unexpected ways. But I personally find anger to be a negative energy, counterproductive to the way I want to live my life. Which isn’t to say I don’t get angry about it. I get pissed off, no question. I just cannot let my anger be a guiding principle.

A couple of years ago, an MS friend directed me to an exclusive on-line group for people with the disease. They took pride in saying it was a “unicorn-free zone,” no new-agey optimism allowed. To be fair, the group was a place where people could vent about the challenges they had to face, not a bad thing to be sure. Perhaps I misunderstood the group’s mission, but there was so much negativity and snarkiness that I ended up feeling bummed. Needless to say, I eventually lost interest. Didn’t Woody Allen use a quote from Groucho Marx in Annie Hall to describe his love life, “I wouldn’t want to join a group that would have me as member”? Well, that group anyway.
Unfortunately, we can’t quit the MS club. We each have to find ways within the boundaries of black and white to cope with the challenges brought about by the disease.  I don’t use the word grey in the context of MS to say MS makes life colorless. Not at all. It just makes it even more complicated. The way life would be without the disease but more so.

So keep fighting the good fight. Make every day count!




Bob Dylan Simple Twist of Fate 

50 Shades of Grey/SNL


  1. Marc, I find your blog enlightening. I don't know if you keep up with it, but today, it helped me. I was diagnosed with MS in 2003, my junior year of high school. The MS phases I've been through are undocumented but remembered in experiences and people. I didn't write down when my index fingers on my right hand went numb permanently, or when my equilibrium started affecting my work ethic, but I remember when people have commented in pity or frustration. Four years ago, I was walking on the side instead of bottom of my right foot and my sister exclaimed, "Oh, Bec, I'm sorry". One year ago, my then fiance, and recently husband, told me, "I don't want it to ever get like it was when we first met".

    Recently, I sprained my ankle badly enough to keep me away from work for 3 weeks. It still hurts and now my left thigh is going numb. I missed work today but nevertheless, I know I must return tomorrow and tonight--to feel things out--I will attempt a short walk around the block.

    All we can do is remember what this disease has put us through and keep fighting. Make attempts, and hope our family and friends will understand our efforts; even if it's the best we can muster.

    Again, thank you for your writing. I may just have to start something myself.

    Best Regards,

    Bec S

  2. Hi Bec,

    Thank you so much for your thoughtful note. Been a while since I wrote the piece and I had to re-read it.

    Wow, you were diagnosed in high school. That's tough. Index finger on your right hand. For me it was my pinky. Yeah, family and friends are so important.

    The worst part of the disease, I think, is not knowing what the future holds, always getting adjusted to a new "normal." Factoring work in is its own challenge. I've been on disability for about 10 years. At first I thought it was going to be the worst thing that could happen but it has turned out to be a blessing in disguise. Now if only I could walk...

    But I digress. Where are you located? Is yours a relapsing-remitting or progressive form of the disease? Based on your above description it sounds like RR. Fortunately for you the medications have improved considerably since I was first diagnosed 25 years ago.

    Best Wishes,