Scoliosis is a very specific and complicated affliction to manage, and in my case, even more so once you’ve had a spinal fusion. A random forward bend test in junior high landed me in an orthopedic office getting x-rays and thereafter being fitted for a brace. I slept in my shiny, new baby blue brace (covered in stickers) for 6 nights a week, and I just couldn’t wait for my Saturday night off. I’m not sure if I told myself this or if the doctor led me to believe it, but the overall idea was that if I stuck with this plan like a good patient, it would be the fix. I did this faithfully for several (maybe 3 or 4) years – so many nights sleeping with this foreign contraption constricting me. Words that come to mind: sweaty, achy, tight, awkward, uncomfortable. Follow-up images showed my curve didn’t get any worse, but it also didn’t get any better. Well, the doctor said I graduated from the brace and intimated that I could now live my life normally, putting this era behind me. My curvature was around 34° and there was no discussion of future scoliosis management.
Throughout my high school years, I never experienced any back pain unless I overexerted myself (i.e.- after a volleyball tournament or walking around all day at an amusement park). In the back of my mind, I knew it was my scoliosis nagging at me in other ways too. I would get easily fatigued from physical activity, I felt like I couldn’t take a deep breath or sing to my full capacity, and I felt the tightness from muscle imbalances and what I now know as fighting gravity. I even saw the asymmetries when I wore certain clothes, but I never really let it faze me.
In my senior year I followed up with a new specialist since I was now 18 and my original doctor had retired. My parents and I sat in this doctor’s office, speechless as we saw the giant S-curve x-ray on the computer screen. My curve had progressed to 48°, and I had what was on the verge of becoming a slipped disc. When I think back to it now, it seems so theatrical. Almost like a ringmaster at a circus pulling back the curtain to reveal, “dun dun duuun!"... The Scoliotic Spine! (Cue the gasps from the crowd). It really felt like a version of that! We had thought this was all behind us and here we are being told that my heart and lungs were at serious risk of compression and if my disc actually did slip then I’d face paralysis. Spinal fusion was sold to us as a minimally invasive procedure that would cure my severe scoliosis, and it appeared to be my only option. There were no resources or hand-outs to prepare me for what was to come. I took to Google and YouTube to find out what I could, which I’m sure you can imagine had very limited information. It was August 2007 when all of my friends were off starting college and I was taking a different path of delaying school and fixing my scoliosis for good. Or so I thought.
What I was not prepared for: waking up almost two days later in the ICU feeling like a truck had just plowed into me. The surgery that would allegedly take 6 to 8 hours actually took nearly 20 hours! My wrists were bound to the bed rails and there was an intubation tube in my throat. I was fused from levels T4 to sacrum, and there were complications from undergoing such an unexpectedly lengthy operation. Most of the nerves in my right arm died, and I lost use of it for the better part of a year. Occupational therapy helped some over time, but even almost 20 years later I still have significant sensitivity issues and have to rely on my learned ambidexterity. If that wasn’t enough, I also suffered from severe pressure wounds on the front of my body. Both my thighs had blisters the size of a baseball, and I had a major one that expanded across my right breast. This all required specialized wound care and frequent dressing changes. I was completely shocked at the trauma my body had just gone through and the pain and grief I was feeling.
After a nearly two-week stay at the hospital, I was released and able to convalesce at home. To be honest, recovery was awful. Not only is the body in shock by the major incision and aggressive manipulation for 20 plus hours, but many foreign objects are now settling in to take up a new residence. What did recovery entail? unbearable pain, insomnia, nausea, fatigue, constipation, anxiety, depression, body dysmorphia. Two months later, I felt a pop and began hearing squeaking sounds whenever I’d walk. It turned out that one of the rods had popped out of place and two screws had come loose, which would mean a second surgery. This was a huge disappointment to me and my family; I experienced a bit of guilt from this, questioning if I’d done something wrong. I hadn’t; sometimes things just don’t work out as they should and reconstruction is needed. Again, the surgery took longer than anticipated, but the repair was secured.
I continued with physical therapy, but it was not scoliosis specific. The therapists gave me very general exercises such as leg lifts, squats, and walking. In fact, I’d discussed with several therapists how they rarely saw fusion patients and when they did it was never a case as severe as mine. This began to make me feel like I was on a lonely island. I had this sense that I was falling through the cracks and these medical providers whom I entrusted with my care were learning as they went. That idea was only perpetuated by my surgeon after facing disappointment at every complicated encounter we had. At one of the many appointments in which I complained of chronic pain and asked if something was wrong and what could be done, he told me “I corrected the problem [curvature], not the pain”. Things he said to me at various appointments: “Do you really still need to be wearing a back brace? You should not be using a mobility aid anymore. Those shoes are bad for your back. But look how beautiful your fusion is.” As time went on, I came to a harsh reality: the surgeon’s job was complete. He operated and “fixed” the problem structurally. A devastating blow I felt? That this surgery handed me chronic pain and it was now my job to manage it.
Over the following year I started taking online classes at Florida Gulf Coast University and continued my healing by doing hydrotherapy. However, during a random stroll through the grocery store I slipped and fell, which caused a screw to shift and disturb my sciatic nerve. Unfortunately it was crippling; after weeks of a slow decline, I could no longer walk and had to undergo an immediate third surgery. I barely remember more of the specifics, but I know that by this time I felt I had no control, no agency over my body and what was being done to it. I did what had to be done and put it behind me, just like in the beginning with my back brace. I did just that until everything came to a screeching halt in 2014.
Throughout 2013 I developed debilitating pain that left me seeing countless specialists who were unable and unwilling to listen to their patient, investigate further, and advocate. The only advice I was given was to get used to taking pain meds for the rest of my life, which I refused to accept. It was one heartbreak after another. Continuing to fight for information on this new pain, I finally saw a doctor who ordered a specific imaging test that would unfortunately reveal a T6 screw indenting my thoracic aorta. Upon learning how dangerous and life-threatening this was, I took this neurologist’s advice and sought help from specialists in big cities all ranging a 2 to 4-hour drive away (Tampa, Miami, Orlando). It may come as no surprise, but none of them could help me. I realize that beyond being a complicated case, I was just too much of a liability for them. One of them actually called me a “ticking time bomb”. After leaning on the help of some terrific friends, I went to NYC to meet with three different surgeons.
It was in the last meeting that I met the surgeon I knew in my heart who would perform my surgery. This is not to say that there wasn’t a great deal of decision-making. He sat me down and explained I had about a 60/40 chance of survival and that I needed to prepare myself and my family; he had performed just two other operations like this one, and they both lived. Two weeks later, I underwent a double surgery– first, an endovascular surgeon implanted a stent (typically used for aneurysm) in my aorta to plug any existing hole and prevent any potential tear from the screw removal. After the stent was secured, the orthopedic surgeon successfully removed the screw without rupture. I remember waking up from surgery, looking around the room and realizing that I had survived; the angelic recovery nurse was taken aback when I’d grabbed her hand and said “I’m alive!?”. She reassured me everything went smoothly as I laid there sobbing.
I spent several weeks recovering in NYC and relying on loved ones to help care for me and show up for me. This time felt much easier to navigate, albeit very different. Having incisions in both my back and my abdomen was extremely difficult, in regards to both pain and mobility. This recovery was different in the sense that while I knew I would get through it, this time it would not be something that I just put behind me.
Looking back, I see that my trajectory would have been much different not only if I’d simply gotten rid of the notion that I was going to be fixed or cured, but if I’d also been properly educated and prepared for the bumpy road ahead of me. All that being said, it was what I had to experience to gain certain insights in my own life, and I consider everything a learning experience and chance to grow.
Of the many blessings to be born from my whole ordeal is finding community. Up until summer 2025, I had just two friends with spinal fusion, one of which I only knew through an online Facebook group. Though Instagram was a platform I rarely used, I decided to turn there to look for any lifeline and I found JUST that. Not only was I amazed at how many individual profiles existed that were proudly dedicated to scoliosis and fusion, but a community for us curvy people and “fusioneers” complete with organized social events!? I was still hesitant to create a profile and share my own scoli-fusion journey, and in a way I still am, but I find delight in this messy process– showing up, creating, boundary-setting, story-telling, and beyond. But the first step in all of this was the giant exhale of finding belonging. That happened for me in April 2026 at BioniCon, the first ever conference for adults living with scoliosis and spinal fusion, hosted by The Bionic Project.
Upon meeting these beautiful people and hearing their stories, I see that so much of our own stories are reflected back at each other. We have a special lens of seeing the world, and we understand each other in a way that only we can. We have so many shared experiences– grief and joy– which is why we speak the same emotional language. We carry each others’ load and uplift one another. They helped show me that I have reserves of strength I didn’t know I had.
For a time in my life, I seriously believed that I had lost my spark; I wanted to escape myself. I attribute that to what I didn’t have the words for then: overwhelm and burnout from chronic illness. I was so engulfed in the trenches. What I didn’t realize was that you can acknowledge your diagnosis, your circumstance, and all its baggage, but not allow it to consume your life. We know that trauma affects imagination, and that is where I was stuck. I was subscribing to negative thoughts that framed my actions. I never lost who I was; my amazing husband reminds me of that daily. However, connecting with other fusioneers opened the door to healing and to new beginnings– to a whole new world of possibilities and creativity.
I can’t emphasize enough the importance of finding your tribe. It was something that I’d always been seeking out, whether consciously or not. As humans we must crave it. The art of inviting others to share in both our blessings and our sorrows– it is a beautiful ceremony of sorts. Within this group a weight was lifted, individually and collectively. We’ve been given a soft place to land.
The biggest eye-opener for me is something that I had gotten wrong for so long. My scoliosis and eventual fusion– the whole saga and its individual fractures– were never chapters to be closed and never revisited. I kept trying to just get it over with and let the past be the past. I put things behind me and pushed extra hard to have normal life experiences without letting my spinal issues impede me. This was never the way. While I thought my story was a locked-away memory of a time I didn’t want to go back to, what I discovered was that while trauma leaves its mark, stories need to be shared. And I’m emboldened to share mine.
The answer isn’t turning inward. “Being strong” isn’t forcing hyper independence. It’s seeking resources and asking for help when you need it, which is often the hardest thing to do. What I don’t hear enough and am so glad to have this platform to say is that it was all worth it. There is so much pain and suffering in this world, but there is also so much beauty and joy. There’s a quote I love that says “No mud, no lotus” which parallels the blooming of a lotus flower and human condition. To me, it’s a nice reminder that lotus flowers don’t bloom in marble, they bloom in mud. And while we might hate a current chapter of our lives, remember we can love the fascinating epic that it is.
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