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Health & Well-being

Life with a rare disease

The Pain of Rarity

This hell? One in a million.

Technically, it’s more like 26 in 100,000. (For reference: a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000, in the USA when it affects fewer than 200,000 Americans at any given time).

I don’t know how to write about this disease without it sounding like a melodramatic Thought Catalog piece. A bit of pain. Some pithy statement about rarity and diamonds and blessings. Maybe a little angst (perhaps anger?). And ending with hope. Sometimes that hope is real, sometimes it feels a wee bit disingenuous. Today, February 28th, is Rare Disease Day, so please indulge me just a little.

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Little Moments of Happy

These are turbulent times. I can’t look at the news or Facebook without discovering something new that makes my stomach churn or my heart sink. I read stories about power and privilege, most often highlighting not only their existence but of some new abuse. I see stories of men making lewd comments to women because they can and stories of immigrants being detained at airports despite having been given prior permission to arrive. I am reading about men deciding what women should do with their bodies and walls that will cost billions of dollars and increase hate.

All this pain and anxiety in the world is making every day a little grey. As rights and freedoms dissolve in front of my eyes, reality is zapping the joy from my soul. Read more

Sky Above Clouds IV by Georgia O'Keefe at the Art Institute of Chicago

Inspiration Seeking : A visit to my favorite painting

I had a pair of epically bad days. Self inflicted bad days – the worst kind of personal abuse. I’ve been unemployed for 6 weeks, and it really hit me like a kick in the gut. So I did what I normally do to get out of a funk. I made blondies and paella. I went to ballet. I took an epsom salt bath with some rose essential oil. I tried to go back to a favorite tap class I hadn’t been back to since surgery, at some point in that calls I lost all the feeling in my right foot again. And just like that, the thing that was supposed to lift me up, dragged me even farther down. Read more

Radiate Goodness | A poster from the Chronic Positivity Project by Mary Fran Wiley

Radiate goodness.

This is the story behind the 54th poster in my Chronic Positivity Project, “Radiate Goodness.”

Radiate Goodness | A poster from the Chronic Positivity Project by Mary Fran Wiley

Those words. They were the closing sentence on a poignant post about the Pulse Nightclub shooting in June, and they’ve been stuck in my head ever since.

I can recall the first time I encountered terrorism. I was 16 and standing in front of a Monet painting at the Musee d’Orsay in Paris, absorbing all I could from each brush stroke. I was seeing what I couldn’t see in an art history book and I was in heaven. Out of nowhere, French police were herding museum visitors in lines to the exits as quietly as a building evacuation could be. We were speculating about fire drills or faulty fire alarms as we abandoned our tour and headed for the exits.

My French was good, but not good enough to understand everything that was being said around me. I was confused as were most of the guests. It wasn’t until we were outside that we finally heard what was happening – someone had called in a bomb threat to the museum.

No one used the T-word that day. There were no explosions. I had no idea what might have been. I was a teenager mad about about missing out.

Just over a year later, I watched in horror as planes flew into buildings. I sat on my porch with my family listening to fighter planes flying over head. I felt the world change around me. A day like that doesn’t just get brushed away. It was terrifying. It was overwhelmingly sad. And it keeps happening.

I’ve watched in horror as terrorists have brought guns to movie theaters and churches. I’ve been angry as they shot children and people out to celebrate. A hate monger is running for president. Hate seems to have bubbled up just about everywhere I look.

But if you look past the headlines, you can see healing. People offering to ride public transit with Muslim women in Australia. Counter-protesters with angel wings blocking the nonsense of the Westboro Baptist Church.

The point? In all this darkness, you need to be the light. Small, quiet gifts of hope add up and don’t cost a thing.

Radiate goodness.



I’m a survivorina, so I’m starting hope.dance

Survivorina is a hashtag I discovered on Instagram. Dancers who are dancing despite what life has done to their bodies. When I found them, I found a tribe. It made ballet feel even more right.

I’ve mentioned a few times that ballet saved my life. That learning how to move again gave me freedom from my pain and the confidence to get stronger and continue fighting for a better quality of life. Now,  I want to help others with pain disorders have that chance.

I had seen mentions of dance programs for Parkinson’s disease and adaptive dance programs for Autism. Then, on World Ballet Day, I caught a segment on the Ballet for Parkinson’s program from the English National Ballet. A seed was planted.

As I started talking to people about this idea, it started to become real. Friends and family started sending me other Youtube videos of ballet companies doing workshops or classes for children and adults with disabilities. Others had done it, I was determined to make it happen for people like me. People who might be afraid to walk into a dance class and tell the teacher that they can’t jump or that their body doesn’t move quite the same way others do.


The organization

I want others to experience the joy of dance. I want to create classes that someone suffering from chronic pain can walk into and still feel like they are learning ballet or tap. I want to help teachers know how to teach to those limitations.

Right now, I have a dream, a name and a mission statement.

Hope.dance aspires to create dance programs rooted in classical dance forms that allow sufferers of chronic pain to develop confidence and strength while creating escape from the realities of constant pain. These dance classes give participants a chance to be expressive and creative and instill a sense of freedom that participants may no longer find in their daily lives due to their conditions.

Moving forward, I have to find instructors, partners and students. In the mean time, you can support the organization by buying a shirt, contributing via GoFundMe, liking it on Facebook or signing up for the newsletter.

(dance) #squadgoals

Dance #SquadGoals

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.

ballet-2imgMy 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.

me & mark yonally after a sunday morning class

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.

posing after our warm up for a performance at CLLAW

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.

tapcrewWhen 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.

tapping into strength

Tapping into strength

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).

Friends getting ready to take the Syncopated Ladies New Moves workshop at American Rhythm CenterThe 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.

dance and be free


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.

me meeting chloe and maud arnold of the syncopated ladies

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.

there is beauty in the jiggle


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!

Credit: Rosa Raffart

Dancing into Two Thousand Sixteen

Facebook presented me with a memory from 2011 this morning. Usually, when Facebook brings up the past, I am reminded of something funny or happy. Today, not so much. My tiara says “Happy New Year”, but the night of that party was anything but.

Everything about the picture broke a little piece of my heart. I remember dyeing my hair back to my natural color so I didn’t have to worry about maintaining it. I cut off 8″ of hair to accommodate my treatment. The purse on my shoulder couldn’t be put down no matter where I was. I was wearing clothes that I had to buy for what they could function rather than fashion. I was with a boyfriend who was afraid to touch me anymore.

It was the time I tried a 6-week epidural catheter. I couldn’t shower, bend, lift or twist. I carried a giant purse to conceal the shoebox sized drug pump and IV fluids. That treatment left no part of my life in tact – it forced a wardrobe change to loose clothing that could accommodate the tubing inserted into my spine.

I didn’t know how I was going to keep on keeping on. I couldn’t live in the future I could see.

a photo from ballet this morning and a photo from New Year's Eve in 2011

I scrolled past it. I scrolled back up to it. I scrolled past again. There was a pit in my stomach as I remembered the desperation I felt that night. That year. I’ve been thinking about that picture and that time all day.

Five years later, I found myself in a ballet studio. I woke up early and headed downtown. I was tired and working through a flare. But I was dancing. I was jumping. Today, I was free.

Everything is different in the photos I took this morning. The droopy attitude leg, slightly sickled foot and awkward hands are secondary to the fact that I am holding a position on the CRPS-affected leg on releve. I see the fighter who managed a full pirouette despite being in need of a nerve block. I see a body that is fighting its way back. I see the possibility of a future. I see the life I wanted when I wrote my new year’s post last year. (At that time, I had no idea that the dancing metaphor was going to turn into a literal passion). Like the Captain Picard meme says, I made it so.

Tap dance on the CTA

Image Credit: Rosa Raffart

“It matters that you take the steps, not how fast you take them.”

After a year of radical change mixed with a serious stubborn streak, and I made it farther than I could have ever imagined. CRPS is still incurable. I’m still a cyborg. My body still has veto power over my brain. But my life has become damn amazing.

Credit: Rosa Raffart

I’m taking steps. I’m making plans. Big, life-changing plans. In the wise words of my pain specialist (a few minutes before my last Lumbar Sympathetic Nerve Block), Dr. Amin, “It matters that you take the steps, not how fast you take them.”

Two thousand sixteen is bound to be great

It just is. Because I am going to be alive. Because I am going to dance. Because I am going to hope. Because I am going to love.

I want the same for you. A great year. Stuffed full of things like hugging, smiling and love. Of course, I made you a poster.

The poster is wise words from one of Neil Gaiman’s New Year’s Wishes “Hug too much. Smile too much. And, when you can, love.”