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Staying on Pointe in My Life With Multiple Sclerosis

“You are two inches taller, and in complete control,” my ballet instructor once said.

This repeats like a mantra in my head most days I’m walking into something I’m not sure I can handle.

With a progressive, debilitating disease like multiple sclerosis (MS), that can be a lot of things in any given week. One of the most difficult aspects of having a disease like MS is the grief that can come with each loss during its course.

There has not been a matter I have not grieved for, be it the small motion of my pinky finger or the full function of my left optic nerve or simply the ability to live a day-to-day life without the unpredictability of a pending relapse.

It’s enough to make a person want to give up. At the very least, it’s enough to make a person not want to try anything new, because you face the fact of the matter. One day you’ll lose it. Maybe even all of it.

Growing up, I was no different than many other little girls with a jewelry box that had a twirling plastic ballerina inside it. I wanted to be that ballerina, her body raised on the tips of her toes, tutu swirling, arms stretched high above her head in a perfect arc.

I never had ballet lessons as a child or teenager. Yet throughout my life, it was one of those images I’d see at theater or on television and feel myself smiling like I did when I was small, still wishing I could be that ballerina.

In my mid-30s, I tried ballet via YouTube lessons in the privacy of my own home. I told no one. I already had MS; I already had issues with sight and balance and spasticity. What kind of fool with such a disease would think she could balance on her tippy-toes and spin?

I didn’t want anyone to see me fail.

For months and then a couple years, I’d follow the YouTube instructor on my ballet “lessons.” I secretly loved it. It made me happy. I watched my body change; I felt my body change. What other exercise hadn’t done for me, or re-gained for me in my losses from MS started to show again through the ballet movements. My weak left side strengthened, my flexibility improved, my spasticity lessened, my balance became stronger, my brain worked harder to remember the choreography.

MS did not go away. I still had relapses, flares and struggled with the day-to-day crashes MS brings. Yet ballet made me feel stronger — not just physically but emotionally.

My dream was, and is, to dance on pointe.

I sought out a dance studio willing to take on an adult ballet student with some serious health issues. I was turned down a few times, which was enough to deter me — for a while. But then I’d try again, and I finally found an instructor with a fantastic ballet background not only willing to teach me privately, but excited to do so.

For a year now, I’ve been taking those private lessons and working towards dancing on pointe. I’ve learned how to treat my body, how it works, how proper ballet form can change not just your body but your life.

My instructor is a genuine, professional and sweet person who has made me laugh and believe in myself more than I ever could have imagined. “Relax as you fall,” she says. “There’s an art when you hit the ground. Toe, ball, heel, toe, ball, heel…”

This is another mantra I keep in my head. Not just when I’m dancing, but when I’m living.

That’s the risk of ballet. You know at some point you are going to lose your balance. You are going to take the fall. You are going to hit the ground. And it’s going to hurt.

You are going to want to give up.

So much like my MS.

But you’re going to do it anyway. You’re going to get back up and go back out there. Whether it’s to keep on living, or go out in pirouette, you’re going to keep living.

It may not be perfect. It may not even be pretty.

But now is not the time to give up or let go of any dreams, MS or not.

I know I may never dance fluently on pointe. I know someday I may not be able to do ballet at all.

Yet, I am so, so happy I ever learned it at all. I am so happy I met a dance instructor who cared about my health and my dream. I am so happy I let go of all my fears and just tried.

I know it could all be lost.

For now, though, I’ll keep dancing.

Getty image by Tatyana Berkovich.