Last week I journeyed to NYC to pick up Amanda’s award from the MS Society for her part in helping The Maybe Sump’ms reach the top 20 fundraising list as part of Bike MS. Amanda made the top 200 list of fundraisers, something that Maybe Sump’ms team captain Pete “Casino” Hayes could not stress was a major achievement for a virtual rider.
But there were some revelations that happened to me during the course of my day that hit me in the way that things sometimes do when you’re staring in the face of something like MS. The first one came when I stopped by a Manhattan record store to see one of the owners, an old friend (we’ll call him JM) who I had not seen in years. Though he was out, his business partner was in, and after telling him what I was in town for, he reminded me that JM also takes part in Bike MS because his wife has MS. My immediate reaction was to say “oh no!” until it hit me out of the blue that this old friend and I had a lot more in common than I thought.
But part of my revelation was that I sometimes forget that my wife Amanda has MS. And while I don’t have MS, I’m married to someone who does and have been with her before her diagnosis, during her diagnosis, and after. I’m still with her now. Little has changed and MS, of course, is often an “invisible disease” especially if treatment and medication are working for you. In my time hanging out with Pete Hayes never once did I stop and think “hey my friend here is doing pretty well for someone with MS.” But that’s just the point and is often one of the hardships that people with MS encounter in their daily lives: other folks often forget that you have MS.
This leads to my second revelation which occurred during the dinner and presentation. While stopping to put some Swedish meat balls on my plate (insert obvious joke here), I looked around the room and had the sudden realization that in this large group of assembled folks (probably over 100 people), it was nearly impossible to determine who was directly afflicted with MS and who was, say, one or two steps removed. There were some folks who were walking with canes, but who is to say they had MS? Who is to say anyone in the room had MS?
But that’s just it – much like other auto-immune diseases and chronic conditions, one really never knows what someone else may have when you encounter them, say, at any sort of function or even just walking down the street. In one sense, this is a good thing, but in another, as I said earlier, it can be problematic in job situations where your boss doesn’t realize why you may be having the occasional physical issue or need to call out sick more than average because, you know, you don’t “seem” sick.
The third revelation of course came towards the end of the awards ceremony when they were giving out the fundraising plaques (Pete said “shouldn’t they call it something else? Plaques are what got me diagnosed!”) and announcing the amounts of money raised. I cannot say enough about how much this emphasized that every little bit really does count towards finding a cure for MS. Maybe you think that $50 or $100 doesn’t make a difference but it really does. Dr. Jeffrey Haines, an MS researcher at Mount Sinai who spoke at the ceremony, said that with continued funding a cure may be close. Imagine that – MS cured, and, as Dr. Haines pointed out, something that could be spoken of in the past tense, rather than the present and future. Hope granted, fears vanquished, lives restored. If 10 people each give $5, that’s $50 more towards a cure. If 100 people give $10 each, that’s $1000 towards the extinction of MS. It really does all add up, and one person can make a difference.
So hence for the second year in a row I am very happy to be a part of Crash Safely. We hope you’ll join us again this year. Who knows? MS may be affecting your life directly as we speak, but you may not be aware of it…yet.