Friday, March 23, 2012


So many faces in and out of my life

Some will last
Some will just be now and then

Life is a series of hellos and goodbyes

I'm afraid it's time for goodbye again – Billy Joel, “Say Goodbye to Hollywood”

One of the most significant aspects of coping with the effects or mere fact of multiple sclerosis in our lives is the reaction of the people when they learn we have it. The response from individuals close and far can vary widely. I’ll never forget when I was at my last job, following a day out sick as a result of a high, debilitating fever, I decided to tell my boss (the woman who hired me about six months before) that I had MS. I hoped she would be sympathetic to my situation.  Instead, she made it about herself ("How could I do this to her?") and was shocked that I hadn’t been forthcoming in the first place. Our relationship had always been turbulent, but after that incident, there is little doubt in my mind that she treated me differently, in a negative way. Unfortunately, we always have to worry about how people in all areas of our lives -- supervisors, colleagues, friends, relatives, neighbors -- will respond to discovering our "dirty little secret."

Many years ago, shortly after I was diagnosed, a friend from college with whom I had always been very close reacted to news of my illness with shock and confusion. My wife is convinced he couldn't cope with the fact of my disease. Our relationship deteriorated quickly after I told him about it. Though we'd been best friends for many years, we fell out of touch very quickly thereafter, despite his living just a few hours away. Clearly, physical distance was not why we went our separate ways, a fact that still pains me today.

I’ve been pondering the general nature of friendship as a result of recently reconnecting with another old college friend via Facebook. When we got together for lunch the other day, we picked up precisely, and reassuringly, where we had left off some 24 years ago. I was extremely grateful that my obvious disability didn't freak him out (I did prepare him on the phone, but still). Despite my general comfort living with the disease, you never know for sure when it is safe to divulge. And so much depends on who you choose to tell; from my personal experiences, some people can handle this news; others, not so much.

Those of us living with MS have to accept whether or not to share a unique, often damaging, secret with friends, family, co-workers, even if we "look so well." For many of us, it can feel as though we are, as the cliché goes, "circus clowns smiling on the outside but in tears on the inside." By letting the metaphorical cat out of the bag, our vulnerability reveals itself. We are faced with choices about who we can and cannot tell about our disease; in the process, we learn important lessons about ourselves. Still, it can also be liberating to find out who our true friends really are. And we can make new friends, too, by joining a community of MS patients either locally or via the internet. Whatever would we do without the electronic superhighway?

Enjoy the spring. Keep fighting the good fight.

All my best,


"Say Goodbye to Hollywood"


  1. Oh so true ... sad but true. Thank goodness for my online friends.

  2. Thanks, Judy. I'm so happy you liked it. Have a great weekend!

  3. Yes true and sad, well said Marc.
    I'm no good at secrets, their are two kinds of secrets too good to keep and the ones no worth keeping. Many people said don't tell anyone keep it to yourself a secret. Sorry a secret is a lie and isn't the best way to build a working relationship with anyone. Now I don't share with many people about what it's done or is doing to me. Frankly it has nothing to do with them. Telling them I have multiple sclerosis not M.S. most people react better and ask questions and look on line about. When asked how I'm doing or handling it I truthfully say I'm fine! Because I am doing the best I can with what I got to work with. If they have questions I'll answer them, or let them know where to look for the answers themselves, then they can ask more informed questions. I do have some "dirty little secrets" tee hee M.S. just isn't one of them.

  4. Obviously, each person's experience can be different. I know that a friend thought he was doing me a favor by telling our bosses about it when it wasn't evident. I was fired shortly thereafter and had very little recourse but t8o find a new job, quickly. Now that I'm on disability I don't need to be discreet about it anymore. In the end, I suppose it can be situational.Not having to worry about it can be very liberating I think.

    1. Sorry didn't mean to upset you. I told my boss as soon I knew, for safety reasons knowing I could be fired had I not informed of a medical condition. I'm Sorry if you want to remove my comment go ahead.

  5. Another great post. I'm a very open person, a poet and writer, who loves to connect with other people. I was diagnosed with MS two years ago, after having had MS for about 5 years prior to that.

    One of the first things I did, once I was able to, was to write an article about why MS was a good disease for me to get. I then posted the article to an online site. Being able to connect my thoughts on this matter, and to be able to do the typing required was a positive thing for me.

    It made me feel more in charge of myself and my body, when it seemed like my body was letting me down. I'm working hard at maintaining my sense of humour and this is a great help in remaining positive. This is where the article is:

  6. Sorry to take so long to respond. I appreciate your thoughtful responses to my pieces. I really like the positivity of your column. A band I like called The Hold Steady named a recent album Stay Positive and I loved its simple straightforwardness. It's kind of my mantra. Be well, Marc