Missing facts and missing bones, the impact of Vertebral differences
Nina's Story
I found out at 10 years old that I was missing part of the base of my spine, along with associated nerves.
At the time, I assumed it was only a small part missing, although I knew the nerve damage had a huge impact on my continence, alongside my anorectal malformation. I also felt self-conscious about my small bottom and was jealous of people with peachy bums.
Over time, though, I have learned to accept the way I am.
Revisiting the Past
When I was 37, I requested copies of my medical notes, including MRI scan images, and realised that far more bones and nerves were missing than I had thought. I discovered that my S4, S5 and coccyx, along with their associated nerves, were absent. I was completely taken aback.
A re-examination of life
Afterwards, I started reflecting on experiences throughout my life that suddenly made much more sense.
I remembered being in primary school, expected to sit cross-legged on the floor, upright without slouching, and how uncomfortable it always was. At the time, I assumed everyone felt like that and that I simply had to endure it. But I had half my sacrum missing as well as the effects of three major abdominal surgeries.
No wonder I struggled.
I experienced something similar during adult exercise classes. My lower back would become uncomfortable, and I would think, “I’m so unfit” or “I should be able to do this.” Suddenly, everything made sense.
I now understand why positioning and discomfort affect me the way they do.
Reassessing the Facts
These days, if I become uncomfortable while sitting, I no longer blame myself for changing position, using a cushion, or getting up to walk around.
As an adult, I can communicate my needs and choose where I want to sit. If I am in an exercise class, I can ask for alternative exercises or take a break when needed.
Looking back, I wish that as a child and even before I was 37, there had been more recognition of how my spinal differences affected my comfort, posture and positioning.