Thursday, September 26, 2013

Skaters Gonna Skate

Something weird is happening because Jack Osbourne is on Dancing With the Stars. Social media is abuzz with talk. Not about his dancing abilities, but about him dancing with MS.

Some people are worried about the level of physical exertion required by this show. Or Jack being under very hot studio lights. The anonymous horde expresses concerned about his stress level, his long working days, and the lack of self care he might be having to endure.

But—and here’s the rub—other people are digitally shouting that Jack’s appearance on DWTS is actually doing harm to the MS community. By dancing his way through coaxial cable, Jack is somehow leaving the television-viewing populous thinking that all people with MS can perform a Rhumba. Some comments have said that there is enough confusion and misinformation about MS without Jack defying the pre-conceived notions of what MS looks like.

I can completely see both sides of the argument, while still acknowledging how ridiculous the argument is to begin with.

I don’t think it was ever lost in subtlety that the reason I went to the Roller Derby tryouts was that I had been diagnosed a few weeks before. My diagnosis really drove the point home that I need to chase my dreams now. Today. This moment in time. I might not get another.

Another motivation was Dr. Sister telling me that I needed to get strong while I could in preparation for a time down the road when I may need all the strength I can get. But the most compelling reason for me was the distraction. For a few hours a week, my Swiss cheese brain was only focused on one thing. And it wasn’t MS. Maybe that is why Jack wants to dance.

One of the blogs I follow is written by a woman named Katja, who is a weight lifter. She also has MS and uses a wheelchair. She is also one tough cookie who can do three times as many crunches as I can. Is she the “face” of MS more so than Jack is? More than I am?

Author, advice columnist, and font of wisdom Dan Savage was on Marc Maron’s podcast a little while ago. They were speaking of gay rights—how far they have come and how much further they have to go. Dan said something that really struck a chord.

“Once you can’t hide, you fight,” said Dan.

He was speaking about the fact that the LBGT community is much more visible than it has been historically. He was saying that one of the best things that a person can do to further the cause is to come out. By not hiding in the closet, you have taken the first step in the fight.

I hope the LBGT community will not mind me hijacking their metaphor. But isn’t the same thing true of people with MS? Shouldn’t we be coming out of the Myelin Closet?

We need to talk about the MS. We need to show the people in our world—and the people in our World—that there are as many flavors of this disease as there are people who have it.  We need to fight the disease, not each other.

Having said all that, not one of us needs to serve as the MS ambassador. No one ever needs to show the world either our strength or our pain. We all have the same disease, but in very different ways.

Jack can dance. Katja can bench 100 pounds. I can play Derby.

And each and every one of us can find a way to twirl to the music.


  1. Brava! (Does this mean I'm going to have to watch DWTS now?) (Oh, and I made it to 115 pounds this week!)

  2. That's amazing! You go! And no, you never have to watch DWTS. I'm not sure our poor brains could handle it. :)

  3. I watched it once, with my daughter, in support of mother-daughter bonding. I'm not sure I could face doing it again.