Living Spinefully

Hello Friends,

On November 20, 2008, 11-year old Laura walked into her first spinal fusion surgery. Reflecting back on the last 15 years, I’m filled with conflicting emotions – grief, triumph, loss, compassion, frustration, sorrow, anger, loneliness, hope. A lot has changed in even just the last five years. At the 10-year anniversary in 2018, I was hiking mountains in Peru, noting the passage of time since only one spine surgery, assuming my that’s how my entire journey would look. I find myself drawn to remember and reflect.

My first surgery was my largest, with a 13-vertebrae fusion from T3-L4. The months prior were full of endless worrying and crying, as I struggled to wrap my pre-teen brain around the details that seemed most important to me at the time – trying to explain to my sixth grade class why I was going to be absent, having to wear a brace under my clothes for months, and having a scar on my back for the rest of my life. Not surprisingly, the things I was most worried about ended up not being my biggest challenges. Though my surgery was successful in terms of the orthopedic correction, my medical team struggled initially to determine why I started vomiting repeatedly a few days post-op, unable to keep even crackers and jello down. Only after taking me off everything besides Tylenol, misattributing my nausea to pain meds, did they diagnosis Superior Mesenteric Artery (SMA) Syndrome, an rare digestive complication that doubled my expected hospital stay and meant that I went home being tube fed for two weeks. All things considered, SMA was a random fluke that would have no consequence on my future medical history (knock on wood). But it added so much fear, pain, and uncertainty to an experience that already pushed my limits.

By 6 weeks post-op, I was back in school full time, making jokes with my friends about the “rock hard abs” and “turtle shell” that was my back brace, using humor to find a new role to play within my social circle. Over the next few months, so many adults would tell me how strong and resilient I was, which guided the narrative I created for myself. I didn’t know how to talk about the sadness and fear about everything I had been through, so I focused on my story of overcoming. When my guidance counselor tried to check-in with me around two months post-op, I told her I was fine, I didn’t need her anymore, it was all over. By six months post op, I was far more concerned with what boys my friends and I had crushes on and the upcoming transition to junior high. From the time I was 12 to the time I was 23, scoliosis felt like a thing of my past.

For so many reasons, I am grateful for my primary takeaway of resilience and overcoming. I appreciate all the people in my life who told me I was strong and helped me get through it. I know that, in the developmental stage I was in, I needed to feel normal again. And I cannot blame myself or anyone else for not knowing things I hadn’t yet had the opportunity to learn. But knowing what I know now, I can see how my surgery became this sort of trophy that sat in the back of my closet, like the certificates for perfect attendance and the gold pins for playing at a piano recital. I would take it out every once in a while and look at it fondly, feeling proud of the memory, but only ever seeing a static accomplishment of the past, never as a formative experience that would have lasting effects on my future. When the disordered eating behaviors, body image issues, and intense self-imposed academic pressure surfaced in my early teens, I didn’t see a connection to scoliosis. When depression and anxiety nearly had me hospitalized at 17, I didn’t see a connection to scoliosis. When I found so much healing, accomplishment, and joy at becoming a distance runner in college, finally being able to celebrate the capability of my body, I didn’t see a connection. But then when a standard run left me unable to sit or stand in December 2020, the connection to scoliosis became obvious. Because not only did the trophy in the back of my closet neglect the traumatic experience of my first surgery, it also didn’t teach me how to properly care for my new, bionic body.

Knowing what I know now, I can see the through lines. I can see the ways that scoliosis contributed to low self-esteem, control issues, and a lot of body insecurity. I’m angry that I wasn’t properly informed of the risks, the potential complications, the strategies to keep my spine in good health. But I can’t change the past. Knowing what I know now, I can also see the ways that scoliosis has made me more aware of the beauty of the present moment, more grounded in gratitude, and more compassionate towards others. While processing this upcoming anniversary with my therapist the other day, he asked me “what would you want to tell your 11-year-old self?” After some consideration, I decided on the this three-tiered message:

1. Laura, you’re allowed to feel this. You’re allowed to have space to acknowledge that this was a really hard experience. You’re allowed to give yourself that compassion.

2. You are so much stronger than you think you are.

And 3. Scoliosis isn’t over. Your body is structured in a different way and is going to need special care. You are capable of giving yourself that care.

In many ways, I am in sitting at a similar cross roads now. Just shy of 2 months post-op from surgery #3, in what has been a challenging year, I can feel the pull to pack it up and put it behind me. Set another trophy on the shelf and pretend nothing happened, as I get pulled back into work and life. But knowing what I know now, I can also decide to validate all three: the hurt, the strength, and the knowledge. I can decide to give my 11, 23, and 26 year old selves the space she needs to process.

As always, thanks for reading,

Laura