BY ALEXANDREA COMSTOCK
LETHBRIDGE, ALBERTA, CANADA
I grew up not knowing what was wrong with me as I faced the consequences of what I eventually learned was early-onset FSHD. I had foot drop. I couldn’t close my eyes. I had severe scapular winging, scoliosis, and lordosis. People called me “duck” and would quack at me. I hated gym class and would often be removed for refusing to participate. I knew my limits, but nobody believed me. I played in an all-male lacrosse league for two years, but the bullying because of my body tormented me to the point that I finished my schooling at home at age 17.
I had a daughter when I was 19 years old. When I turned 20, I went to a specialist to inquire about corrective surgery on my spine, but was instead diagnosed with FSHD. I decided to begin modeling, to show the world what FSHD had done to my body. Because of my disease, I was thought unfit to care for my daughter. I fought that charge and won full custody. When I was 21 years old, my daughter was also diagnosed with FSHD.
During those years, I created the Faces of FSHD project. It is a place for people to share their selfies, stories, and connect as a community to raise awareness of this condition. We have sold shirts worldwide, held a fundraiser, and we now proudly supply free photography to individuals with disabilities.
Every person I have ever met with FSHD was through Faces of FSHD. This included Mika Mae Jones, a model from Los Angeles. She and I collaborated on Faces of FSHD. Mika was like a sister to me. If I didn’t have FSHD I would not have had Mika. Tragically, Mika passed away this past June after she fell and sustained severe brain trauma.
I don’t hate FSHD, but it hurts a lot. It is a heavy weight.
My mom was recently diagnosed with FSHD as well. It has been extremely difficult for her psychologically. I grew up watching my mom work hard and provide for everyone around her, no matter how she felt, and that’s who I want to be. More than anything, I want my daughter to know that she is supported, loved, and beautiful. I want her to have a community to relate to, talk to, and enjoy.
At age 23, I’m a single mom, I have 11 rescue animals, I’m an advocate for FSHD, I’m an awareness model, and I am trying to change the world. I hope I can make an impact on this world for my daughter and for everyone with disabilities. I have a loud voice, a big personality, and I intend to demand attention until we have what we need to live a healthy, long life. I will wear AFO foot braces with a sparkly dress without hesitation. I think that’s important.