It’s more than jazz hands and shuffle ball changes. It’s more than pliés and pirouettes. It’s more than the escape from the everyday.

It’s the people. It’s the community. It’s the support.

Two weeks ago, my doctor suggested that I replace my spinal cord stimulator with a new device. He asked me to consider taking a few months out of my life again to try to make things better. So that the consequence of dance isn’t crying myself to sleep while I wait for the pain to go down. So that there are less days when the act of putting on pants is pure agony.

On Thursday, I wallowed while considering new cyborg body parts. On Friday, I dragged myself to the barre. As I peeled off my jeans and hoodie that hid my ballet attire, I started to breathe and smile. We talked about muscle knots and custom leotards. Annoying bosses, traffic snafus and check-ins about statuses we had seen from each other throughout the week. We got it out and then we danced it out. As we stretched, put out layers back on and dispersed from the studio, my world was right again. On Saturday mornings, the crowd is different, but the community is the same.

My tap classes are no different. When I arrive before class at Joel Hall, the advanced students wave when they notice me. I find our tiny dance prodigy and we try to watch the last few minutes as taps fly at lightening speeds. As the advanced class winds down and the few brave souls that join in enter the studio, everyone is all smiles. Even when we have no idea what the answer to a jazz trivia question. As we circle up, my brain goes into over drive and my feet seem to only be able to do toe taps and heels. It doesn’t matter – there is always something good to be said about everyone’s attempt and always something to learn.

When the class changes again and the pros leave the studio and the rest of the intermediate class trickles in, there is more catching up. Fits of giggles when we royally mess up. Cheers of triumph when anyone does something better than the week before. Our teacher, Mark, doesn’t give up on us, even when we are sure we can’t do the step. With constant pain and paresthesia, I learned how to do pullbacks. And there were many a protests that I couldn’t do them. When I start to lose balance and reach for the barre, I am encouraged to keep moving (or chastised just a bit if I am using it as a crutch and don’t really need it).

As we end, we share our upcoming performance dates – it’s a mighty talented crowd of dancers, actresses and singers. Since no one is there to dance in a bubble, we’ve started building friendships that exist outside of the classroom. The mirrors are cracked, the floor is well-loved and the windows are tiny, but the community makes magic there. If my mind starts to wander to the what-ifs, it’s not long before I end up off a bit and get called back to the moment from an out of sync rhythm or missed step.

As I write this, the theme song from Fraggle Rock has started running through my head…”Dance your cares away, worries for another day…” Each trip to the studio leaves me feeling just a little bit stronger and just a little bit braver.

I even found an unlikely family in my Tap Too (the nickname given to my Tuesday night Tap II at American Rhythm Center) class. My first class a pair of strangers offered me a ride home because I live just a couple blocks from one of them. We have parties for birthdays and holidays at least once a month. It is with these women, many of whom have been dancing for years, that I can see how completely dance can influence a life. That I am not the only person that it has saved. There are cancer survivors. There are women defying aging. There are grandmas and moms (including my mom). There are daughters and friends. A tribe that spends 75 minutes working through steps until we get them just right. Celebrating each other’s accomplishments and holding up anyone who is struggling.

When I go home alone and lay down to charge, I know that in less than a day I will find myself back in one of these places where there is an army of souls keeping me going. I know that nothing is so scary that I can’t do it. I know that I am not alone.

The point, is not to brag about how lucky I am to have found this community, or “squad” as the kids these days call it. It is to encourage you to find your squad. People who treat you to a judgement-free zone but aren’t afraid to tell you the truth. A gang to back up your crazy ideas or just to make you laugh when your whole body wants to crumble and cry. A place to go when you need to get outside of yourself and experience the riches life and art can give you to bring you out of the dark.

_

If you are looking to dance in Chicago, I keep an up to date list of classes & studios where I take / have taken classes.

This weekend.

Oh man. It was glorious. And a little bit hair-brained. I mean, a 3-hour dance class. That was a bit above my level. I have a nerve block scheduled for Thursday, or else taking this class and the one a few hours later might have been incredibly stupid. But, it was a class with Chloe & Maud Arnold, a pair of bad-ass lady tap dancers and I had chickened out when they were here in September. I was not about to let this chance pass my by again. (TBH, I know I am incredibly lucky to have Chicago Human Rhythm Project/American Rhythm Center in my back yard…)

I woke up Saturday morning at the usual time, but instead of pulling on ballet tights and a leotard while half asleep, I put on the outfit I had carefully selected the day before – my cutest/dance/workout outfit. It had to be – I was taking a workshop from a pair of the coolest ladies in tap. My outfit wasn’t the only thing I did to prepare – I took the day off Friday to rest and to store up some “spoons“. And stream Syncopated Ladies videos on repeat…

I was pretty sure I was pushing my limits, pain endurance and dance skill wise, but going to a workshop like that was something I had been wanting to do for ages. And something I was deeply terrified of. Would my leg hold up? Would I have to walk out early? Would every one notice that my left leg took longer to move than my right? Would I be able to pick up the choreography? Would my stimulator’s pulsing keep me from feeling the rhythm?

At least I had a few dance friends going for moral support – one pro dancer, one old high school friend and one dance class ally.

I put on my positivity mix and hopped on the “L”.

When I arrived, I found my friends and saw a few more familiar faces and got ready to dance, my water and remote control never far from where I was (as cyborgs do).

The class was full of women (and one dude) ranging in age from 31 to 14 and experience levels from advanced beginners to professional tappers and teachers. From the first tap of the warm-up, it was clear this was no regular tap class. And not just because there were masters of the art teaching class. We stopped the warm-up for advice on cleaning up our sounds and our posture. We did four and a half minutes of cramp rolls to “Run the World (Girls)”. Thank goodness the song ended – I almost didn’t make it. I could feel the pain starting to intensify in my left leg and we had only just begun.

As we moved across the floor, I could feel my body start to free up. My arms and upper body were as engaged with the music as my feet. When we improvised, we weren’t showing off fancy footwork, we felt the music. When it came time to start learning tap choreography, I was ready to rip my pants off to reduce the pain and crawl back into bed. But I was there to dance.

 

Step, shuffle ball change fl-ap shuffle ball change fl-ap. 

Steps I know and can do. I can’t tell you what a relief that first phrase was. As the pain intensified, simplicity was going to be my friend. I needed to keep smiling – I wasn’t about to break down in a room of strangers. And then we did the step at tempo. Shit. Deep breaths. I kept going. After learning a few more phrases, we tried it with the music.

I didn’t “kill” it. I barely kept from falling over my feet. Chloe stopped the class and asked us about the song we were dancing to and what feeling we were trying to convey. The song was “I’m Not Rich“, and we were encouraged to think about what we are grateful for, what made us rich that wasn’t money. I started thinking about the CRPS and how dance gave me so much of my life back. It was just enough to get me through the rest of the combination, even though I wasn’t up to keeping up. My leg and courage gave out in the last steps – I couldn’t bring myself to attempt jumping over my leg.

At the end, we all took our hair down to dance one last time and be free. I don’t know what everyone took away from that moment, but the feeling was what I get every time I step into a dance studio (even if it doesn’t always show). In that moment, I even let go of the tension I hold in fear of triggering a flare.

 

The workshop was about more than intricate footwork and proper placement. It was about more than dancing with your whole body. It was about digging deep, being proud, letting go and not apologizing. We were told to embrace the jiggle. To not be afraid to take ownership of our bodies. To dance freely.

Last week, my doctor joked about 3-d printing me some nerves from a horse to help me with my jumping. Saturday, I proved I could make the ones I have work. Thursday I’ll get a boost of nerve-numbing. And I’ll keep dancing. Maybe even with my hair down.

It feels so good to take my shoes off and turn my stimulator back up.

A photo posted by Mary Fran Wiley (@maryfranw) on Jan 23, 2016 at 3:55pm PST

NB: If you want to take a class from Chloe & Maud, they are producing the DC Tap Fest in March!

I had a big moment last Friday.

I danced on a stage. With an audience.

I was as excited as I remembered being when I was young and twirling in a tutu. I invited everyone I knew and a few friends took me up on the offer.

I practiced in my kitchen (I’m sure to the chagrin of the guy downstairs) and I got a new top and borrowed a santa hat. I looked up some stage makeup tutorials. I was going to go all out and the only thing that could have made it more exciting would have been a tutu.

Adults who dance recreationally don’t often get chances to perform and I was going to nail it. Until I got into my head. I started thinking about the car accident where they told me I might not walk again. I started thinking about the CRPS diagnosis. I was thinking about the cane that is folded in my bag at all times, just in case.

I was thinking just how lucky I am to have this opportunity as an adult. I was thinking just how far I have come since I started dancing. I was thinking how great it is that I get to dance with a crowd of supportive people who love to dance as much as I do. I was frozen.

As the music started, my feet started moving. The energy from my class was contagious and I found myself smiling and dancing. When the music cut out half way through our number, I took a deep breath and kept going. I might have gotten a few steps wrong and I might have rushed, but those weren’t what mattered. I was dancing. On a stage. With an audience.

The moment was perfect.

(This performance wouldn’t have been what it was without the community I found in the Tap II Too class at American Rhythm Center. A group that is unwaveringly supportive and always ready to celebrate milestones and accomplishments.)

It was a great finale to a year filled with change and growth.

This triumph wasn’t something I achieved on my own.

It took the support of my family taking the time to get me to and from numerous appointments and procedures. It took patience from friends when I had to cancel dinners for pain or dance. It took a team of doctors to give me movement back. It took an army of teachers to teach me how to move again.

On Saturday mornings, Lynne helped me learn how to engage different muscles and get my left side on board with what the right side was doing. On Sundays, Tristan drills tap technique (in collusion with my PT, I’m sure…) in ways that challenge my bad leg’s range of motion. On Mondays when I’m having a good week, Natalie encourages discipline and fearlessness. One Tuesdays, Lane’s focus on rhythm promotes a connection with my feet that I haven’t had in years. On Wednesdays, Mark’s lessons in musicality and and detailed technique fixes bad movement habits. On Thursdays, Suzanne gives me a chance to glide and fly while building strength and balance.

I’m stronger, physically and mentally

It’s something that I didn’t dare hope for a year ago. Just like I never imagined that I would dance, much less on a stage.

Battling this disease is a bit like Sisyphus pushing that boulder up the hill, but thanks to all these people the hill has gotten just a little bit shorter and there are dance breaks on the way.

My life is an endless cycle of detoxing, retoxing and hoping for the best.

Before I left work for my latest five day epidural infusion, I sent my coworkers the following gifs to explain my upcoming absence:

Translation: Going to get my wiring fixed up by my doctor with the help of some magic potions so I can get back to dancing (and working).”

(They’re nerds, they get the Doctor Who and Harry Potter references (or at least they pretend they do).)

When I talk to friends about what happens during these treatments, I talk about it like a 5-day nap with bad pillows and terrible cable channels. I keep it light because I don’t want pity. I keep it light because they don’t really want to know.

But this time, there were complications. I couldn’t pop out of the hospital on Sunday and be at my desk ready to work on Monday morning. And I want people to understand just what happens while I’m gone.

It’s not a trip to a low budget spa for a nap. (Despite what I might lead you to believe.)

The reality is that treatments are incredibly stressful. I watch my parents fill with worry as the first day starts. Armed with one too many articles about the risks and years of false hope that this next treatment will be the one that changes my life back.

I answer the same questions about my condition for every new nurse and fellow on my case that day. I laugh with them at the ridiculousness that this pain condition started not after a car accident that I was lucky to survive, but rather a running injury a year and a half later. What I want to do is scream about just how unfair that was.

After the laughing come the platitudes. We’ll get it right this time. We’ll get you back on your feet in no time. We have this new idea for a drug combination. Oh, Dr. So and So is the best in this year’s fellows, you’ll be great. Hold tight kiddo, this will be over soon.

I spend the first two days sleeping on and off. Asking my family to bring me anything other than hospital food. Every few hours I have to get a nurse to help me out of bed so I can go to the bathroom. I beg them to bring me bags of ice to numb my back from the intense itching caused by skin breaking down under the tegaderm holding the epirdual catheter to my skin from the base of my spine to my shoulder.

I’ll bring a couple of books and some knitting but I’ll know that I really won’t be getting more than a row or two knit a day and that I might not even crack open the books. But I bring them anyway because I am certain every time that I’ll handle it better.

I go to PT at least once a day, but everything I know about moving my body through space is off because of the (intentional) numbness in my hips and left leg. I practice taking steps and moving my leg in ways that cause excruciating pain in real life. I do exercises in my bed every few hours to get as much movement in as possible while undergoing treatment. When I get released, I insist on a post-hospital milkshake.

This last time, there was a spinal headache and severe muscle spasms thrown into the mix. There’s nothing like leaving the hospital after a pain treatment and being in more pain by the time you get home than you were in when you got to the hospital. Or calling the pain clinic because after a hospital stay with fellows whose bedside manner was worse than sandpaper because your pain is so intense and so widespread throughout your body that you cannot move and you cannot stay still. You’ll even tearfully admit to your mom that she was right and you really did need her to come over to make it better.

But it’s not just the physical

Throughout the whole process, I am counting down the days until I can dance again. Which is really 2 countdowns – the first one is to the end of the 48-hour waiting period to resuming exercise and the second one is to the realistic day of my next class. A day that is never the one I think it will be. Then I worry about how to deal with the fact that I will have lost strength, flexibility and spatial awareness and how I can explain that to a dance teacher in a class of 25 ballerina wannabes in 30 seconds before class.

I am also worried about my client projects and my day job. Did I really upload all the right files to the shared drives? Are they going to have questions that my coworkers can’t answer? Should I try to work even though I am drowsy and still in pain? Will my clients find out I am the “sick” one? Will my coworkers judge me for missing work again? Will they be annoyed that I still won’t be 100% when I come back?

Time to detox and recover from treatment

And then it is over. My CRPS will be battled back to a 3 or a 4 on the pain scale. I’ll be able to shave my legs and wear real pants for the next few months. I’ll get back to my 6-7 dance classes a week after about 2 weeks off. I’ll go back to green smoothies, mostly clean food and all the vitamins I can find to support my body and the limit effects of the CRPS. I’ll detox from the intense drugs and junk food. I’ll work hard to ensure that this treatment lasts longer than the last one.

And I’ll keep hoping that one day they’ll find a cure.

 

I know to many this might seem silly. To be celebrating sticking with something for six months. What you don’t know is that I wasn’t sure I would last 6 minutes.

This life of mine seemed like it had devolved into an endless rotation of treatments, cyborg life and just making it through to the next thing. It was one foot in front of the other, regularly with the help of a cane.

Walking. One step. One step. One step. Infusion. Medication swapping. Walking. Sitting. Zombie.

And despite the positive spin I tried to put on things, I was getting more and more desperate with each treatment I tried. I just wanted to move. I just wanted to be free.

I wanted every step to stop hurting every part of my body. Because that’s what happens when wearing pants makes you cry – your muscles atrophy. They tighten and lock down. Your joints are rusty old hinges on unopened doors. Suddenly, your body is a prison. Standing hurts. Sitting hurts. Turning your head hurts. All because some nerves can’t behave themselves.

Six months ago, I talked my doctor into letting me dance. Four months ago, I talked my cousin into joining me. Two months ago another cousin started ballet (far, far away in the Lone Star State). One has degenerative disks, the other Spina bifida. We’re quite a tribe. But ballet has turned into a haven for all of us. Especially me.

I was so close to giving up. In January when we did one more infusion, I was praying it would last just long enough to get me through the winter. When we did it again in May, I was focused on just how soon I could get my feet dancing again.

Ballet. Tap. Ballet. Tap. Ballet. Zumba. Every week, I point a little better. I turn out just a little bit more. I get my left side doing a bit more of what the right side does. It’s a process. I’m never going to be a ballerina or an amazing hoofer. That’s not what matters. That’s not what’s important.

I’ve successfully completed a pirouette without getting dizzy exactly twice. I might never figure out how to jump high enough to do an assemble. Five count wings are probably not a step I will ever conquer. But you see, my body isn’t just a prison anymore. It stands straighter. Those steps are smoother. That cane makes rarer appearances. My feet are making music again.

At the end of my very first ballet class, when no one was connecting with the port de bras, our teacher asked us a question. “Why are you dancing?” My answer? “Because I can walk.” That was true then and even more true today.

 

 

 

Some days I wonder why I didn’t find deep connection in yoga. Or why barre fitness or ballet burn classes just seemed like a chore. And yet, I can spend an hour at the barre plié-ing, tendu-ing and battement-ing my heart out. I can follow it up with a half hour of adagio and grande allegro. When it is time for a reverence, I find myself wishing there were just a few more minutes of dancing.

Of flying.

Of discovery.

Of strength.

Of joy.

It’s science. Really. And we all know it. But despite the science, people treat dancing as an activity they left behind in their youth. Maybe they were too tall or didn’t have the feet. Maybe they couldn’t afford to start when they were young and were told they were too old when they wanted to begin at 18. Sure, professional dancers have a bit of a mystique and us amateurs may never get there, but fame and fortune and a spot in a dance company are not the only reason to shake your groove thang.

Why you should dance

1. Fitness
Fitness is the reason most of the adult dancers I know got started. All forms of dance help to increase flexibility, endurance and strength. It takes an incredible amount of strength to complete a pirouette or a leap. Your core is what stabilizes your body as you move – that constant engagement builds your muscles.

2. Improved grace and spatial awareness
When you spend an hour thinking about how to control, engage and release muscles to create a particular step, you are increasing your spatial awareness. Your body moves through space with fluidity and you are much less likely to bump into the counter, again.

3. There are memory and cognitive benefits
Unlike most other fitness activities, ballet (and other dance forms) require your mind to be engaged and in the moment. In spin, yoga and barre classes, your instructor gives an instruction and you do it. You don’t have to remember a sequence and every change is announced. In a dance class, you have to remember the patterns and combinations. If you wait for an instructor to tell you the next step, you are already behind. Research shows this engagement is helpful in protecting against Alzheimer’s. Yay neuroplacisity! (Some studios even offer programs because of these benefits, like the adaptive dance program at Hubbard Street Dance)

4. It makes you happy
Sure, some of it is the endorphin boost that any exercise gives you, but dancing brings even more to the table. Dance has been shown to improve body image and coping ability while reducing self-consciousness. These benefits have been shown to stick around, even if you take a break from dance.

5. You want to dance
Whether you’ve always wanted to dance or you’ve watched one too many seasons of Dancing with the Stars and are hooked, if you want to do it you should go for it. Sure, you may never dance the lead in Giselle or tap your heart out on a Broadway stage, but that doesn’t mean you shouldn’t dance. You should dance your heart out. Frequent classes and daily practice if you want to be good. Weekly dance fitness classes if you just want to dance but aren’t worried about obtaining the mastery needed to dance en pointe or hoof it in an improvisational tap class. It doesn’t matter.

So honey, put on your dancing shoes and come out and dance with me.

 

5 (Breathe in.)

6 (Breathe the arms.)

7 (Arms to first.)

8 (Left hand on the bar)

So it begins. Slowly at first. Rolling through to demi-pointe. Warming up our feet. Some tendus. Pliés. Up to relevé and bring that foot to passé.

Shit. I can’t hold it. I just did that last week. I know I can balance but something isn’t right. I can’t feel my muscles contracting through the pain.

This is going to be a long class.

Cambrés. Ok, both feet on the floor. We can do this one. Lift up and over the spine. That’s a weird….oh.

I didn’t turn the spinal cord stimulator off. The flare is bad enough I didn’t even feel it on and thought I had managed to kill the battery off. Let’s just say that stimulated limbs don’t have the same strength as they usually do.

It might have been the hardest ballet class I have taken yet. (I know, it’s been a whole 3 months…and about 20 classes…so there will be plenty more difficult classes). But I did it. It wasn’t the most beautiful ballet, but it was my ballet. It was cyborg ballet.

My doctor agreed to another 5-day epidural because the pain is flaring (as it does every time the weather changes) and because last time, I was set free. He forbade me from taking “full-on Riverdance” (despite it being on my bucket list) and in suggesting ballet as an alternative gave me a part of my life that I never thought I was going to have back. I can move again. I can be physically strong again.

It doesn’t matter if I have a bad class. Just going was a victory. Each step was another win even if it wasn’t quite right. It just means I have goals I can work toward.

Because I am going to pirouette, darn it.