Bent but not broken
By: Shilpa Leo
Tags: Survivor, Scoliosis, Invisible Disability, Scoliosis Surgery, Resilience

Well, this almost looks like my Spine with Scoliosis.

It has been over 7years since a major incident occurred in my life that left a permanent “physical” scar on me. I have since changed inside out in ways I could have never fathomed. In 2009, I was exposed to the devastating truth of having Scoliosis — a spine deformity condition that results in lower backaches at the very least of its effects, the severity of which really depends on how progressive the curve (deformity) is. In layman's context, someone with this condition would not be able to walk straight (posturally) and would have an incline following the spine's curvature. Scoliosis typically doesn’t happen because of a sudden accident; mine started during my adolescent years and kept progressing since then.

All my life, I was told by family, friends, and even strangers to correct the way I walked, to “straighten” myself, and correct my walking posture to try and bend the other way (If only it were that simple!). I tried, but it would be so painful to force against the natural way of the dominant spine, and I would suffer silently, not knowing what to do. I must mention that when all this was happening, I was growing up in India, where there is little to zero knowledge about this condition to date and no mandated screening for children in schools that could help with early detection. Neither did I own a phone or a personal laptop, and Google wasn’t even big back then to be the one source go-to destination for any question, so I was pretty much in the dark on what was happening to me. Over the years, my lower back pains just got worse until the extent that during the time I was pursuing my Bachelor's degree, I recall that I could not stand for a few minutes and required leaning on to some support like a wall just to put my backache to ease.

Life went on, and I just continued living, accepting I couldn't do long walks or stand for longer times and nothing else majorly impacting my lifestyle. I was accepted to pursue my Master’s degree in Singapore and left India for the first time in 22years. When I returned home (India)during my first-semester break, I met with a minor accident while traveling on an autorickshaw on a rundown road. This increased my backache greatly and inevitably prompted my family and me to seek medical attention when a spine x-ray finally unveiled the reason for my constant suffering over the years — Scoliosis. By this time (2009), the spine’s curvature was already well over 70degrees, and I was told I should consider getting a surgical correction as it was too late for any non-intrusive resolutions like physiotherapy or braces, etc.

I returned to Singapore to complete my Master’s degree and, in parallel, sought out specialists locally to confirm the severity of my condition and the options on hand to find the best way forward. I gave myself a couple of years from 2009 until 2013 with physiotherapy sessions while monitoring if my curve was improving or atleast stagnating. But, as ill fate would have it, the curve just worsened year after year, and by 2013, it was already over 75degrees. Worse still, the spine’s curvature, which in my case was originally C-shaped, had started to become S-shaped, curving on top and starting to touch internal organs such as the lung.

I had to make a life-changing decision then to go for a surgical correction. I didn’t know back then what would happen next, but I didn’t have a choice. I had to do it then or sometime later in life to arrest the deformity. But given the reduced chances of recovering from major surgeries with age, I decided to get myself operated on when I was just 26years old. At this stage, I hadn’t started a family of my own yet, not married, no children, just a boyfriend who was sincerely there for me come what may and my parents.

The surgery that was estimated to last for 4hours ended up stretching 2x more to almost 8hours (Imagine the nerve-wracking experience for my boyfriend and family!). I landed straight in the ICU, given the complexity of the surgery. One of my lungs suffered a tear during the spinal correction — this was an unpleasant gift with that lung permanently since having a lower breathing capacity. The surgery replaced more than 60% of my boned spine with 2 titanium rods and 13 screws precisely that hold the remainder of my boned spine from curving further. It was a physically and emotionally draining recovery period in the days and months to come for me. I gave up on several occasions, played the victim card repeatedly, and battled sleepless, painful nights with tears. But, things did get better eventually. Though the surgery could only correct the curve by 50% (now my spine curvature is around 35degrees), it did enough to arrest persistent backaches and still managed to prevent further curving and to hit any internal organs. I still need to do yearly periodic checks to ensure the curve isn’t worsening, and thank goodness that things are still stable since the surgery.

Life is pretty normal for me today; I stay away from extremely strenuous physical activities, carrying heavyweights, but otherwise do light exercises and am even the mother of a 3-year-old today. I use my past to motivate those around me today by engaging in my workplace’s Diversity, Equality, and Inclusion efforts, as this gives me immense purpose. I actively participate in hosting events or facilitating workshops around disabilities or workplace inclusiveness, which positively impacts the audience and cultivates awareness and inclusiveness. Connecting the dots backward, things did turn out okay for me in the end (well, atleast until today, since I am not completely off the hook and discharged from yearly checks, we never know what the future holds, but we can only hope!). I was so scared if I would see a better day, a normal day/life ever again back when I was contemplating the surgery. But, like all things good or bad, it is so true to believe in “This too shall pass” and continue living.