There’s something about handwriting to-dos and my calendar that I can’t seem to replicate with digital tools. Maybe it’s the designer in me longing for something tactile – you know like in the old days when we sketched before we moved to computers. Read more
Ah. Back to baking and it feels so good.
When I decided to discontinue frannycakes, I was disappointed that I hadn’t shared this recipe, especially because it is one of my most requested (and personal favorite) treats. Read more
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.
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.
I’m sitting on the floor of the lobby of University Center, a dorm for the plethora of universities in this part of downtown Chicago. It’s been a few years since I have found myself plopped down with a crowd of people, socializing, typing and resting.
This morning as I was checking in at WordCamp, I texted my friend and frequent conference buddy Erica about this magical place I found myself. I texted her this morning about how great it was to be at a conference where no one had any fucks to give about appearances.
Let me be clear, it isn’t that I showed up to a conference of slobs. They were here, too. But it was the fact that no one cared what I was wearing. The style of my hair didn’t have to be premeditated. I didn’t have to agonize over how I should do my makeup.
I got to show up and be me. Just nerdy me. With a top knot and leggings and orange canvas gym shoes. I winged my eyeliner because I could, not because I had legions of people to impress. Or worse, compare myself to.
Back to the floor. I’ve met people I never would have met if I was worried about what people were thinking about my outfit. I’m not worried what people will think about my cane if I end up needing it. I’ve had several offers of people to help me hack my cyborg parts.
I’ve talked about tattoos and PHP. I’ve talked about careers and families. I’ve talked about my blogs and other people’s podcasts. Sitting on the floor. Charging our phones. Being ourselves.
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.
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.
NB: If you want to take a class from Chloe & Maud, they are producing the DC Tap Fest in March!
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.
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.
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.
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.”
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.
Roast chicken might be one of my favorite meals. It is simple. I mean, really, really simple. It is delicious and tastes like home. It is also one of those meals that I hadn’t bothered to tackle for quite a while. Why would a single lady need to roast a whole chicken? It’s not like I am feeding a family or trying to get some handsome fella to propose (seriously, it is a thing people do).
And then I realized that a chicken can be made into meals for the whole week. A nice roast dinner on Sunday. Grain bowls for lunch. Chicken salad sandwiches. Tacos. Enchiladas. BBQ chicken. Any number of soups or chili varieties. As a topping for a green salad. Roasting chicken is a great shortcut for meal prep and quite the economical choice. (Ugh, such an adult thing to do – when did that happen?)
I’ve now made this chicken at least a dozen times, and is in regular rotation both for dinners with friends and for prepping meals for the week.
- 1 approximately 3 1/2 pound chicken (preferably organic)
- 2 medium onions
- 2 carrots
- 2 sticks of celery
- 1 bulb garlic
- olive oil
- sea salt
- freshly ground black pepper
- 1 lemon
- 1 small bunch fresh thyme, rosemary, bay or sage, or a mixture of those herbs
- About half an hour before you are going to make your chicken, take it out of the fridge. Your chicken won’t cook right straight from the fridge. Preheat your oven to 240°C/475°F/gas 9. The best part of this recipe is that you don’t have to peel any of the vegetables. Just wash and roughly chop them.
- Pile all the vegetables and garlic into the middle of an 11×13″ pyrex or other roasting tray and drizzle with olive oil. Drizzle the chicken with olive oil and season well with salt and pepper – making sure you rub it all over. Prick the lemon all over with the tip of a sharp knife. Put the lemon inside the chicken’s cavity, with the bunch of herbs.
- Place the chicken on top of the vegetables in the pan and put it into the preheated oven. Turn the heat down immediately to 200°C/400°F/gas 6 and cook for 1 hour and 20 minutes. If you want to roast some potatoes or vegetables, put them in the oven for about the last 45 minutes or so.
- Baste the chicken halfway through cooking and if the vegetables are looking dry, add a splash of water to the tray to keep them from burning. When cooked, take the tray out of the oven and transfer the chicken to a cutting board to rest for 15-20 minutes. Cover it with a layer of foil and a tea towel while it rests. If you are making gravy, make it now.
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.