My legs 3 years later

For the past few weeks, I‘be been working on a painting reflecting the last three years. This was an emotional, yet empowering piece to conceptualize and bring to life. I think back to my medical journey, as it was a dark time for me the first two years. Most appointments I would leave crying, feeling down and hopeless. When I learned about all of the surgeries I was facing, I felt defeated. I became angry at myself, frustrated with providers, and my guard was up. I lost confidence in myself, and I stopped believing in myself.

I had a difficult time putting into words all the emotions I have been feeling for the past three years, and the best way to express my feelings, was through painting. I found painting as my form of communication and expression.

5 surgeries later, and my lower extremities are looking good. The pins will be removed in less than 2 weeks, and I will begin relearning how to walk, using specialized braces and forearm crutches. Out of state specialists will be joining my medical team, as there has been a high suspicion I was born with a spinal cord disorder called Tethered Cord Syndrome. TCS is when the tissue of the spinal cord is tethered to the tail bone. This is a condition that is closely associated with Spina Bifida, and most of the time, TCS doesn’t show up on imaging.

When I think of TCS, I visualize my spinal cord as a rope, tied to my tail bone, and slowly it’s freying. When i move my back or legs, I feel the rope pulling harder, making my legs extremely spastic. I painted the rope wrapping around my legs to symbolize my spinal cord controlling the spasticity in my legs.

I was referred to a neurosurgeon, who specializes in EDS and Tethered Cord Syndrome; usually EDS is correlated to TCS. At my first appointment, I learned the terms spasticity paralysis. Spasticity paralysis is when specific muscles are continuously over-contracting. Spasticity is caused by damage to the brain or spinal cord. The continuous contractions I experience are involuntary, meaning I can’t control when these occur.

This is just the beginning, and we are making progress finding the root cause. I feel a sense of closure, knowing answers are developing. I’m ready to close this chapter in my life, and begin the next one.