My name is Sophia. I'm a 29-year-old artist living in Northern California with my partner and our two young sons.
I was diagnosed with Friedreich's Ataxia at 13, though I noticed I couldn't keep up with the physical activities of my peers early in life. At 14, having just entered high school and the most awkward time of life, I struggled to maintain focus and calm in navigating through crowded hallways. I remember how much mental power it took to keep my gait steady. This was the point when I convinced my best friend to get her nose pierced with me; I wanted something I could concentrate on while I walked. No, it didn't make me cross-eyed- just being able to see its faint sparkle in front of my face gave me confidence and a sense of safety. It still does.
I managed to steer clear of wheelchair life (something I hoped to keep up with forever if I could) until the middle of my 19th year when I was diagnosed with Osteosarcoma (bone cancer). The chemotherapy was exhausting, and the following leg surgeries (plus recovery time) had me gradually relying full-time on a chair. I have been in remission for nearly a decade, though my leg complications persist.
In the years since that ordeal, I met my kind-hearted partner, and we traveled in Europe, Australia, & multiple parts of the US with our sons.
I work from home, and while I have a complacent lifestyle, I do my best to incorporate stretching and exercise into my daily routine, as well as healthy eating. In recent years, I have been learning spiritual practices and the art of meditation. I love to share my art and bits of my story, as well as habits that help ease the struggle with FA.
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2020 (67)