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.

Roll With It

Here is everything you ever wanted to know about MS, but were too polite to ask.

Multiple sclerosis is a disease that affects the central nervous system. Much like the plastic cover that houses an electrical wire, the myelin of our nervous system—the brain, spinal cord, and optic nerve—covers and protects our nerves and channels electricity to the correct place in the body. Essentially, my myelin is being attacked by my own immune systems. Traitorous scoundrels. Wretched hive of scum and villainy. All I wanted do was pick up some power converters.

Sorry, I geeked out for a moment.

Anyway, the demyelination leaves scars, often referred to as plaques or lesions. These lesions are dotted throughout my brain. You can see a couple of them in my MRI image below.

What’s that you say? My brain looks so sexy? Oh, go on, you flatterer. Those little white dots are the lesions. Incredibly, this scatter shot of lesions has avoided a lot of important brain parts. Much like Dick Cheney quail hunting. The MS buckshot missed the quail and only hit some minor right-wing attorneys.

Scientists don’t know what causes this in my particular nervous system. They don’t know how to cure it. But here are some of the things that doctors think may have accelerated the progression in me. These are things you can do for yourself to help your myelin last your whole life. And even if you have the myelin of Wonder Woman, you should do these things anyway.

Get more Vitamin D. If we had our levels checked, most of us would find that we are Vitamin D deficient.  Part of the blame for this falls at the feet of our dermatologists, who are forcing us out of the sunlight for the sake of healthy, cancer-free skin. The sun is a major source of Vitamin D. And while this freckle-faced redhead is more than happy to sit in the shade, wearing a very large hat, I have to supplement my D. I take a capsule every morning. I now buy fortified milk and orange juice. I try to eat more leafy greens. You won’t find me getting rickets like some sailor of yore. Now you know the secret of why Popeye ate so much spinach. Well blow me down! Toot toot

Stop smoking. I know, I know… Hey pot! Meet kettle! Smoking has been linked to accelerating MS symptoms. I smoked in college and for a few years after. I quit for a while, and picked up the habit again after I got divorced. I’ve quit for good now. But I will freely admit, I quit because I had to. Dr. Sister (that would be my sister that is a doctor) would kill me herself if I didn’t. I wish I could unsmoke every cigarette I sucked down. I also wish I could go back and work for Google circa 1999. I can’t do either. I miss smoking. I really do. On the other hand, how would I ever hope to do 27 laps around the skate track in under five minutes if I was still smoking?

Relax. I mean that literally. Try to de-stress. Extreme stress can not only worsen symptoms of MS, some science-y types think it might actually increase the risk of developing it.

I also mean… relax. There are some things you can do to MAYBE stave off this stupid disease. But it seems like it may have an element of the random to it. So why worry about it? Do what you can to be as healthy as you can. Wear your seat belt, eat more salad, smell the flowers. Other than that, we are all kind of along for the ride.

MS is not a death sentence. It’s a life sentence. But I won’t do hard Andy Dufresne time in solitary. It will be more like Martha Stewart prison: hanging with lots of interesting, tough, smart women who occasionally hit each other, then crochet a scarf. MS isn’t fatal, a common misperception. It is, however, something I will be managing for the rest of my life. And I will manage the shit out of it.

I might need a wheelchair someday, but until then I plan to be on eight wheels—not four.