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Yes, I Dance Sometimes. No, I'm Still Not Healthy.

The poet Rumi once wrote, “Dance, when you’re broken open. Dance, if you’ve torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you’re perfectly free.”

As someone with severe and incurable chronic illness, these are words I live by.

I’ve been dancing since I was a toddler. It’s something I always return to, one way or another. From a health related standpoint, dancing is both physical and mental exercise. Exercise is recommended for some of my conditions; trying to remember choreography gives my brain some much needed challenge. Dance stretches are part of the home regimen that has been prescribed by my occupational therapist to help some of my orthopedic issues.

In practice, I’m not able to do something that used to be simple, such as taking a ballet class every week. If I’m lucky, I can get through four or five dance classes per year. I still try to perform with friends’ groups every now and then, but it takes a significant toll on me.

Someone seeing a video of me dancing at one of those rare performances might think I’m well. They have no idea just how much time and effort goes into those three minutes of appearing healthy.

When an opportunity to dance arises, I have to go through a period of deliberation to figure out if it’s even feasible. Among the concerns:

1. If I can get there. These days I really can’t take long trips on mass transit, paratransit is sketchy (even if I call early, I won’t always be able to reserve a spot) and rideshares are expensive for me. Sometimes a friend is proactive on this one and offers me a lift, otherwise I have to assume I’m on my own and calculate whether I can afford to take a Lyft there and back.

2. If I don’t have a doctor’s appointment that day. There are some weeks where it’s literally one appointment after another.

3. If it’s far enough away from any other activity I have to do (a doctor’s appointment, a trip to the grocery store, whatever). I need to make sure I won’t be recovering from something else and I will have time to rest afterward.

4. How much rehearsal is involved. All of the things I do are flash mobs or more laid-back dance pieces where there isn’t much advance rehearsal. It’s usually “show up today and dance,” or there’s one rehearsal beforehand. If it’s something where extended rehearsal is required, I have to opt out. I can’t handle taking class once a week. I don’t have enough juice to get through several rehearsals, especially if they are close together.

Once I’ve decided the performance might be doable and I sign up, the following process ensues:

Receive the dance video. Watch it about a hundred times as I’m sitting on my couch and vaguely moving my hands in the same direction as the dancers. Get up and mark it twice so I have the choreography memorized. Gently work through any problem steps. Make any necessary adjustments to the choreography – if there’s jumping or running, I can’t do it. Practice for 15 minutes, doing the choreography very lightly. Sit down again and meditate on ways to sell the choreography more.

Stew and fret because I’m not able to dance the way I did when I was well. Remember that I can still be expressive and sell the dance, even if my technical skills aren’t what they were.

Go to the event with a backpack filled with meds, healthy snacks, fruit, water and coffee. There’s usually a rehearsal beforehand. Sit down while they are placing everyone in their spots and at every other opportunity. Run through the dance once or twice at full energy and lightly mark it the rest of the time.

Between rehearsal and the performance, we usually have a few hours of downtime. If I’m invited out to dinner with fellow dancers, I smile and politely turn them down. I need to rest, and I can’t afford it, anyway. Instead I find a quiet corner, have some of the snacks I’ve brought or something inexpensive to ear, and drink the can of cold coffee I’ve brought. I try to time both coffee and pain meds to 45 minutes before I have to perform. I rest for a while, and when we’re close to showtime I do my makeup, which takes about five minutes. My hands shake too much to do eyeliner safely, and I usually have to fix the mascara. I don’t look sick; that’s the idea. Try to warm up with stretches.

Line up with everyone to go backstage at the venue. They take the stairs; I follow the security officer to the elevator. Everyone is cheering and shouting. I cover my ears and sit down to the side. I don’t get up until we’re ready to run out onto the court.

Dance. Put every bit of energy I can into it. Smile. Try to sell the choreography, savor every bit of joy and freedom I can. Try to fight through the flagging energy that usually occurs about three minutes in. Try to focus so I don’t forget choreography I know backward and forward.

Cover my ears again as everyone cheers backstage. Retrieve my bag and go back to the elevator. Some people might be going out for drinks or dancing – I’m going home.

One of my friends offers me a ride home, which is a welcome kindness. By the time we’ve walked out of the venue, the adrenaline has worn off and I’m limping. I might fall asleep in the car on the ride home. Luckily, my friends know me and are aware I’m not trying to be rude.

Go home. Take a hot shower. Sleep.

Sleep for most of the next day. Still limping. Answer a few texts from a friend. Get a reply that says, “It’s so good to see that you’re up and about today.” Don’t know whether to laugh or cry about that.

I’m even more sluggish than usual and extra-exhausted for the rest of the week.

I’m lucky that the dance groups with whom I interact know me and are willing to work with me so I can still participate. At the pre-performance rehearsals, nobody bats an eyelash if I quietly walk over to a wall and sit down for a while. At one performance, a Zumba-based dance presentation for the 2015 Special Olympics World Games, I arranged with the choreographer to do the first song or two, gracefully exit, rest and return for the last two numbers – which did not include any jumping around or fast steps.

Why go through all that, when it’s exhausting and painful and there’s so much adjustment involved? The answer is simple: dance is one of two holdovers from my life as a healthy person to which I cling. It’s my old “normal” and I need it. Even if a dance performance takes a toll, and even if it’s something I can’t do often, it’s something that inspires me to get up in the morning. I can look at a dance performance scheduled on my calendar, and even if it’s weeks away, it makes me smile and want to keep going.

Dance is the one thing that still allows me to take pleasure in my body, to be proud of it, to move and function in ways that make me happy. To physically express myself. To be me. To trust in myself and my body, without asking, “Right, what are you going to do to me now?” It’s now a rare treat, rather than an everyday part of my life, which makes it even more precious.

Anyone who thinks that means I’m healthy doesn’t have a clue.

As chronically ill people, we are still allowed to seek happiness, just as much as anyone else. Being sick doesn’t mean that we’re required to live under house arrest and never do anything that brings us joy.

Finding those shards of bliss is important. Anyone who would tell us that it’s not – or judge us for it – is not worth our time.

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Getty image by Oleg_Ermak