friends, family… countrymen/women…

28Apr13

An open letter to those with loved ones or acquaintances dealing with an MS diagnosis.

Last Tuesday, after band rehearsal, I was chatting outside with a bandmate and let him in on my still-relatively-new diagnosis (6 months this Tuesday). He seemed stunned and told me he didn’t know what to say, was “thinking of something inspirational” but couldn’t come up with anything.

Now, I don’t speak for all of us with MS, but as someone who has (mostly) brought my disease out into the open, I’m not looking for any specific words, whether they be of sympathy, inspiration, humor… whatever comes out. And I won’t judge you by what you say, either. All I really need is your support, which can’t always be expressed in words. In the case of the band, know that I will have some nights, unpredictably, where my hands don’t coordinate with each other on the piano like they used to. Initially, I was apologetic, but I have come to accept this as the new normal.

In the case of everyone else–I have my off days, and I’m not just referring to being physically off-kilter. The synonym-finder in my brain doesn’t work so well some days, and conversation with me becomes stilted at times. (Besides, I save my best verbal delivery for my lectures in front of students, where it really matters.) Again, I used to be apologetic, but I’ve started to accept what is happening and am moving on. (Not that I’m settling–I’m working my tail off to improve my condition–but I can’t let it become a new source of stress.)

Whether you see me on a good or bad day, I’m still me, and I’m very grateful to see you, whether or not I express that eloquently. As for inspirational sayings, a lot of my inspiration is intrinsic. So far, my disease has responded positively (that is…. no further progression) after starting drug therapy, lots of supplementation, and really focusing on nutrition (so many variables, it’s hard to tell which one made the biggest difference), and that gives me hope for the future. So, just do what I do, and keep on moving, and keep on smiling…

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One Response to “friends, family… countrymen/women…”

  1. My prayers are with you for strength and perseverance!


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