Hello From the Floor: Dancing with a Brain Injury

Dancing feels about as necessary as breathing to me. My first love was lyrical jazz, then Gaga movement language, and finally - Brazilian zouk partner dance. Each style has enough structure to give my brain a scaffolding of stability, while inviting creative flow and play in a way that nourishes both my spirit and this crazy human body.

On my best days, you can find me gliding and flowing and spinning like water across the dance floor šŸŒŠ. I feel a profound sense of safety and celebration and ease in this body that has gone through unimaginable trauma. But just as likely, I’m somewhere on the floor in a collapsed mess.

I was 16 when I first fell down for no apparent reason. It felt like every muscle in my body suddenly turned to mush, including those for breathing and speaking. That first episode lasted maybe 30 seconds. Doctors told me I was simply “doing too much” and prescribed rest and adrenal support. But the falling continued, increasing in frequency and intensity over the years - up to 40 times a day in my mid-twenties. Sometimes I knew the trigger (like loud sounds, bright flashing lights, being startled, or - the strangest one - the smell of cooked poultry) but often I had no idea.

Throughout the course of that decade, I also developed increasing chronic pain (like a nonstop compressive headache, burning eye pain, and light touch started to feel like hot glass tearing through my skin) and mysterious neurological symptoms (electric shocks down my arms and legs, extreme left body weakness and right body twitching/spasticity, wildly irregular heart rate, and visual + auditory hallucinations, etc).

I spent my early 20s believing, alongside my doctors and family, that I was dying. Worse, nobody could figure out why.

During the same time period, I also had multiple major head injuries, whiplash, and concussions from sports and freak car accidents. Little did we know they were related. The doctors’ best guess at what was wrong was multiple sclerosis, a progressive disabling disease of the brain and spinal cord where the immune system attacks the central nervous system.

I used to love running and tennis and swimming. Finding freedom of movement was a solace during times of stress. A freedom that eroded away during the formative years of adolescence and young adulthood as my body became progressively weaker, painful, and dysfunctional.

At age 26, I went in for a brain MRI looking for telltale plaques of multiple sclerosis. By beautiful chance, this was done on an upright MRI (instead of the classic machine where you lay down) and I was finally diagnosed with Cerebellar Tonsillar Ectopia. CTE is a herniation of the lower brain (cerebellum) out the base of my skull and into my neck. We think it first happened with a bad car accident as a kid, and got worse and worse with each additional head injury.

Refusing brain surgery, I drew upon my background in sensory integration, infant chiropractic care, cranialsacral therapy, and yoga to innovate a noninvasive therapy that saved my life. I was the guinea pig and a dear chiropractic classmate was the hands. In a matter of months, I went from collapsing 40x/day to once every few weeks. I was able to go for a short run for the first time in years.

I grew stronger and regained function, slowly but surely. By 30, I was finally the strongest I’d ever been as an adult. I started with barre conditioning class, and quickly transitioned to lyrical jazz. That first dance class was cognitively overwhelming and extremely physically demanding. I was trying to keep up with choreography in a room full of professional and pre-professional dancers. But I walked out of there crying with joy that I was physically capablešŸ’ŖšŸ¼ of exerting this amount of effort!

The teacher welcomed me and allowed me to be a mess. She encouraged me to take leaps of faith (literally haha) and gently pushed me to try and try and try again when I fell down or couldn’t do something. I was learning to trust my body, to feel safe moving, to find fluidity where there had been only the tight grip of constant bracing. I started to finally breathe. I began to think of myself as strong (a foreign feeling after so many years of extreme muscle weakness). I felt like a person again āœØ for the first time in my adult life.

Six months later, I was in a stopped car and rear-ended at 50mph. Again. This time, my brain herniated out further than ever before, and an upper cervical injury compromised the heat regulating mechanism (meaning now my supercomputer brain easily overheats and crashes). I was a disaster. I had to wear earplugs 24 hours a day because even my own voice in a whisper could trigger a startle/shock response so intense it became hard to breathe.

I returned to dance class within weeks. I had to be driven since I was too dizzy and weak to operate a vehicle. I was able to make the basic movement shapes, but limited to about 5% the amplitude of everyone else, and I cried the whole time. Partially from pain, but mostly it was the tears falling out from the stuck places as I allowed my terrorized spine to flow softly through miniature waves.

Dance saved my life yet again. It was the only place I felt even remotely functional, like I might feel human again someday. The tiny waves turned into concentrically increasing ripples, and I yet again began the process of finding safety in this shell-shocked body. Not only did this way of moving restore my physical body, but by watching my neurological trauma responses during specific moves I was able to create specific brain retraining exercises to restore baseline resilience.

Eventually, my own recovery led to the creation of a therapeutic movement and manual therapy practice that I went on to teach internationally, and even publish some pretty incredible research about šŸ™ŒšŸ¼ More importantly, it’s allowed me to help others who have experienced major trauma to retrain their brain’s resilience baseline and finally feel at home in their body.

Fast-forward to today: years later, I discovered salsa and then bachata and eventually Brazilian zouk šŸ’ƒšŸ» . Zouk is a partner dance that feels a bit like rolling around underwater. In the flow, it’s pure magic.

Partner dancing brought a whole new level of rehab to my world. With the right partner who created SO MUCH safety in how he led me, I was able to allow movement in greater ranges of motion than ever before ... and then later, I could actually move bigger and easier on my own šŸ¤

Zouk dance shares much of the wave-like motion found in contemporary / lyrical jazz ... and it feels like how my body has always wanted to move. Like the truest nature of movement.

But here’s the thing: there’s a major difference between being *technically skilled* with the choreo motions of a given dance and mastering the skill of connection.

Partnering with another person is a conversation. There is a lead and follow, yes ... but you don’t want to be dragging a toddler kicking and screaming. Too many times I’ve taken Latin dance classes where the teacher instructs leads to *force* the follow’s body into some specific move. This is cringe for EVERYONE. In a traumatized and brain-injured body, it can be catastrophic.

The other day, I took a sharp elbow to the ribcage from another couple dancing nearby, and it dropped me into a crying puddle of useless mush on the floor. When startled, shaken, whipped, or moved sharply in any way by another person, all my muscles switch off. This includes not only the muscles that hold me upright, but also the ones for breathing and speaking.

Well-intentioned people try to soothe me with gentle touch, having no idea that their hands feel like hot glass tearing my skin open because those nerves catch fire. Unable to speak, it’s all I can do to gather the strength to physically push them off of me. So in addition to trying to modulate my own nervous system, I’m layered on with worry about handling the people around me who are justifiably bewildered by the mess that I’ve become in a split second.

A few weeks ago the same thing happened when my partner and I accidentally bonked heads - not even hard enough to hurt him, but when your brain is squished out the base of your skull, it doesn’t take much to bruise it. Later the same night, another partner grabbed my shoulder and bounced it sharply to the beat of the music, which tractioned through the nerves and spinal cord, pulling at my brain.

I was in bed for days, and completely unable to dance for weeks afterwards.

Thankfully, I have a longtime client-turned-dear-friend (and new dance enthusiast) who watches me closely and rushes to my side when I end up on the floor. She’s learned my body-based brain hacks that recover me quickly, and communicates with others for me when I can’t yet speak. She is a huge part of the reason I feel comfortable continuing to go social dancing with strangers.

“You need to wear a helmet!” people say. Or, “maybe you shouldn’t be dancing, it seems too dangerous for you.”

But I’m not here to live my life in a bubble. And while the “wrong” things can and do hurt me, the flow šŸŒŠ saves me. It might seem crazy that I usually try to get back up and dance again after an episode drops me, but the reality is that when I move through soft waves it restores safety in my nervous system. This is relevant in the moment, but most importantly, it trains my brain and body over time that it is safe to move again after injury.

The body’s natural response to injury is to freeze, to brace. This is healthy and appropriate. But when trauma is layered upon trauma, the bracing gets to feel increasingly permanent and increasingly restrictive - choking the life out bit by bit.

I am eternally grateful to my teachers and all of my dance partners over the years who encouraged me and helped me to move again. To find grace through the allowing of flow. To gently convince my nervous system and my body that it is worth getting up again and again and again. This is the best way I know to train resilience not only to physical injury, but to the unexpected and inevitable chaos of life.

So you can always find me on the dance floor ... sometimes from the ground, but always in the flow. Save me a dance (or 5 šŸ˜‚).


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