+BACKstory

When I was 8 years old, I was crowned the "limbo champ" at my summer camp.  That same year, I was also diagnosed with scoliosis. Apparently, my spine was bending in every direction - front, back, side to side.

+Diagnosis and Bracing

Like most children who receive a scoliosis diagnosis, I had no pain. It was picked up during a routine screening at the pediatrician. There is a history of scoliosis in my family, so while juvenile idiopathic scoliosis is less common than adolescent idiopathic scoliosis, it wasn’t much of a surprise.

By age 10, my “S curve” had progressed and I was braced. The brace was a hard plastic shell in two pieces, connected by 3 vertical metal bars - a thick one in the front and two thinner ones in the back. It spanned from my armpits to my pelvis. It was just as awful as it sounds, yet I was diligent in wearing it - for 23 hours a day, for four years. I don’t think many children love those preteen years, but they are definitely not improved by wearing a metal and plastic shell around a growing, changing and scrutinized preteen body. It was hot and sticky in the humid Houston heat. All of my clothes had holes in them where I rubbed the metal bar running down the front of the brace against my school desk. I went to a school where we wore a formal uniform with a blazer on Mondays. Unlike most of my classmates, I preferred Mondays because the blazer hid my brace better than the white polo shirts we wore the rest of the week. A seventh grade boy who sat behind me in orchestra amused himself by tapping on the bars of my brace with his viola bow. Those were not the best years of my life. I was shy. The brace, in a way, allowed me to hide. I literally never came out of my shell.

+Road to Surgery

Despite my compliance with wearing the brace, by age 13, my thoracic curve had progressed to 57 degrees and my lumbar curve was 45 degrees. All signs pointed to surgery. Upon hearing the news, I was relieved - an odd reaction in retrospect. In my 13 year old mind, surgery was my ticket out of wearing the brace. Nobody explained to me what the surgery entailed. My one and only question was whether the implanted rods would set off a metal detector in an airport. The doctor said no, I said fine.

There was a 3-4 month lag between getting the news and the surgery itself. During that time, I weaned off the brace. Those days of freedom weren’t as blissful as I had hoped. My back muscles were weak from lack of use. Without the brace to hold me up, my muscles were so exhausted from supporting my body weight that by the end of the day I actually looked forward to putting the brace back on. That was my first glimpse of the importance of taking care of my back body. It had failed me and I had, in turn, failed it by not paying attention. But I was a kid — following medical advice, no less.

I remember other things about those months leading up to the surgery. The pre-op blood donations to myself, the MRI, the visits with others who had had the surgery so I would know what to expect (but mostly so I could see that they hadn’t been paralyzed, my one and only fear about the surgery). I especially remember standing in front of a full length mirror with my mom the night before the surgery, measuring my height against hers. I grew 2 inches the next day.

+The Surgery

On March 1, 1994, now 14 years old, I underwent spinal fusion surgery at Texas Children’s Hospital. On that day, two orthopedists surgically lengthened my spine and implanted two metal Coutrel-Debousset rods along my spine to hold it in place while the vertebrae fused together. To initiate the fusion (which solidifies over the course of 6-12 months following surgery), the surgeons took a bone graft from my iliac crest (the back of my hip). The surgeons created a paste-like material from the hip bone and placed it between the vertebrae. With that boney “glue” in place, the vertebrae began to fuse together. From that day forward, I would never move 10 vertebral levels of my spine — from T5 to L2 — again.

Like most adolescents who undergo this major surgery, my recovery was relatively smooth. I stayed in the hospital for a week. I remember wincing in pain when they wheeled me from the ICU to my room a few hours after surgery and the bed jostled when exiting the elevator. They had me up and standing the day after surgery. I had to learn how to walk again as my center of gravity and surrounding musculature had been abruptly altered. The bone graft on my hip was strangely the most painful part. It continued to give me pain for years.

About 4 weeks following surgery, I was back at school. Brace free and armed with a pillow to protect my healing back from the hard school chairs, I didn’t feel sorry for myself. My parents instilled in me a sense of dignity and pride about what I had experienced. My mother called my scar my “badge of courage.” Those words and that attitude were crucial to my recovery and my newfound post-surgical self.

A mere 3 months post-surgery, I went to sleepaway camp. I was finally free of the back “stuff” of my youth. I was excited to start my freshman year of high school as a new person. No more back brace, no more pillow, it was all behind me. In every way.

I suppose that could be the end of the story. But, as I now know, it’s more complicated than that. The fusion was and remains solid. My surgeons did their job well. It’s a complex and physically-demanding (and, some would say, violent) surgery. What the surgeons did not do, however, was cure my scoliosis. I still have two 30 degree curves. My spine still wants to curve and twist. While the curves are no longer life threatening since they won’t progress as I age and threaten to crush my lungs and heart, I have a large section of my spine that is permanently immobilized. I didn’t realize it as a 14 year old, but that takes a toll on a body over time. The areas above and below the fusion are especially vulnerable. Enter pain and frustration. And then, thankfully, enter yoga.

+The in between years...

From my teens to my early 30s, I was mostly pain free. The narrative that it was all behind me served me well. I had my badge of courage to show what I had been through but I didn’t connect any of it to my life at the time. I had the occasional discomfort which I attributed to my rigorous study and work schedule. I spent hours in classes as a student and then at an office as an attorney, hunched over desks, but I largely ignored the pain signals coming from my body. I was living entirely in my head.

It wasn’t until I had children that things changed. Pregnancy was not the problem. The physical and constant demands of lifting and running after babies put an extreme strain on my fused spine. My neck and upper back in particular were tight and locked in. The overly mobile section above my fusion was working overtime to hold everything together. The muscles couldn’t keep up and frequently went into lockdown. I would go days where I couldn’t turn my head to the right. I was cranky and uncomfortable.

I didn’t know where to turn for help. I saw a random orthopedic surgeon (being decades and thousands of miles away from my now retired surgeons). He looked at my x-ray, declared the fusion sound and sent me on my merry way. This is a common story among those with spinal fusions, several years out. The doctors will simply look at the x-ray, as if just our bones and the aging, metal hardware surrounding them can tell the story of the impact of a multi-level spinal fusion on our muscles, our nervous systems, our emotions, our whole bodies. I felt abandoned by the profession that had done this to me.

+Movement and Yoga

I was incredibly flexible and hypermobile as a child — hence the “limbo champ” at camp. I danced and did gymnastics for years. This too is common among children with scoliosis. The reasons for it aren’t totally clear but curvy spines often go with stretchy muscles and bendy joints.

After my surgery, I went back to dance throughout my high school and college years, but it was in my early twenties that I noticed yoga was everywhere. I found the images of the poses to be both beautiful and intimidating. As a dance lover, I was fascinated by the way the body was contorted, but as a person with two metal rods in her spine, I thought it was off limits. In fact, yoga was the one and only thing I consistently told people I could not do.

After beginning to feel chronic pain and tightness and after failing to find help from the medical industry, I finally decided to give yoga a try. It’s worth noting that I was also a frazzled new mother of two young children. The mental benefits of yoga that so many had touted called to me even more than the physical benefits it offered. I just needed time to myself and some peace and quiet. I approached those early yoga classes with curiosity and just enough caution to avoid hurting myself. I was hooked, and my body felt better. The dancer from long ago finally had a movement practice again. I didn’t realize how much I had missed it, how much it mattered to my psyche. I knew I wanted to deepen my studies. I decided to take a yoga teacher training course.

+The Body Speaks: Self-Study, Grief and Acceptance

When I began practicing yoga, I did it despite my spine. I steered clear of poses that seemed inaccessible or dangerous; my attitude was one of avoidance. I didn’t dare go anywhere near the no man’s land surrounding the scar. I cringed when I held my arms behind my back because I could feel the metal hardware in my upper spine. When I began to study yoga more seriously, however, I realized that this attitude was holding me back. I realized I was clinging to my fear and anxiety about my spine and that I had buried a deep conflict in my body and mind.

One of the principal tenets of yogic philosophy is svadyaya, or self-study. Practicing svadyaya for me, inevitably, meant a confrontation with my spine. I was no longer comforted by the mantra of “it’s all behind me.” My spine had been speaking to me for years but I wasn’t paying attention. As you learn from doing a simple lunge in a yoga class, just because you can’t see your back leg doesn’t mean it isn’t vitally important to the pose. You must, in fact, pay critical attention to that back leg or you may just fall flat on your face. When I came to yoga, I was very close to falling flat on my face. I had been ignoring my spine, the history of its confinement in a brace, the trauma of the surgery, the scars - both physical and emotional. I was anxious, I was frazzled, I was stressed out and I was in physical pain. Yoga finally gave me a way to access and even love my spine which, as it turns out, was anxiously waiting to get my attention.

A particular moment in my yoga teacher training stands out. I had to sit out most of an intense backbending workshop as I simply couldn’t perform the poses. I knew this going in, but something happened over the course of the 2 hour class as I observed my classmates going deeper and deeper into spinal extension. The class culminated in urdhva dhanurasana, or wheel pose, a deep backbend when hands and feet are on the floor and the student arches her back to full extension. As I observed 20 other students moving into the pose, I was struck with the sensation of the backbend. I had a flashback to that 8 year old girl, under the limbo stick with others shouting “how low can you go”. I remembered what it felt like to bend my spine. Not only did I remember it, I actually felt it. For over two decades, I had not experienced that sensation at all. At the end of class, I unexpectedly burst into tears. I tried to make an excuse, explaining to my teacher, “I don’t usually throw myself a pity party about this.” Her response changed me and my relationship with my spine forever. She said, “You’re not throwing yourself a pity party, Jen. You are grieving.”

Grief. That was unexpected. What do I have to grieve about, I thought? I’m healthy, I have many blessings in my life. I have nothing to grieve. But it turns out, I did. I had to grieve the loss of my mobility. I had always loved movement. I kept gravitating to it in my life, yet my central channel of movement - my spine - was immoveable. I’m grateful for so many things in my life, including the surgery that I underwent as a 14 year old. I know it was necessary and even life saving. But I did lose something that day and it had been waiting over 2 decades to be acknowledged. Yoga, and the process of listening to my body, opened the door to grief, and ultimately to healing.

This is the gift of yoga. As any student of yoga knows, it is not just a series of physical postures. It’s an ancient practice that, if you let it and if you do the work, allows you to see the hidden struggles under the surface. It gives you a path to acknowledge your suffering and then to let it go, to detach from it.

I won’t profess to have fully detached from all my suffering associated with my spine. This will be a lifelong practice and even then, I’ll have work to do. Sometimes it feels like one step forward, two steps back. I worry about my aging spine. I know that my genetics predict a future with joint replacements and osteoporosis, among other things. How will my spine and the hardware fare as time takes its inevitable toll? When these thoughts arise, I know to stop and bring myself back to the present, to do what I can to pay attention to the clues my body is giving me now, and to be kind to its needs. This is hard work. I’ve already sustained my share of yoga injuries and haven’t always heeded my body’s call to stop and listen. While yoga has paved the way for dramatic healing, I am but a beginner on this long road.

Through much reflection — and tears and pain and sadness and even a heathy dose of anger and resentment here and there — I’ve learned to both listen to and simply be with my twisted, curved, immobile, manipulated, invaded, complicated spine. It has had quite a bit to tell me and has ultimately led me on a life changing path. And for that, I am eternally grateful.

 
x-ray

X-ray

Coutrel-Debousset instrumentation with fusion levels from T5 to L2

 

Photos by Andi Schreiber and with special thanks to my teacher, mentor and friend Betsy Kase for pushing me to finally make this photo project and story a reality and for the use of her beautiful studio space at Yoga Haven.  And to my teacher Jill Ganassi, who gave me permission to grieve.