My New Reality
Like every American, I have been very concerned with the developing Coronavirus ordeal. I know firsthand how a virus can literally disable an individual, a family, a community. In 2014 I was diagnosed with Acute Flaccid Myelitis, a rare polio-like illness caused by the Enterovirus- D68, leaving me paralyzed from the neck down. My whole future was derailed and my independence was stripped away. I literately had to depend on others for everything. I was supposed to go to music school, and here I am not even able to feed myself.
I had to reimagine my future. Yes, there is a lot that I can no longer do but I can’t keep my head in a place of loss. Music is still very much a part of my life. I can no longer play my instruments, but with the use of adaptive technology, I can compose. This past year I composed a piece for a 40 piece symphony orchestra and it premiered in front of a sold-out audience. Later, a film was made about my musical process and story, called “Amazing Grace”. It’s really my family, and community that put the “Amazing” in the title but I’m really honored to be associated with this title. The film shows how the power of community, love, and passion can rally around unfortunate circumstances to turn it into something positive.
There is so much that is scary and unknown about the coronavirus and its effect on society. However, I think we in the disabled community can help everyone in this regard. We know firsthand how quickly things change and how we have to adapt our lives every day. We know it can be done, and we can help lead the way. The world is fearful of the dark side of the moon. We know the territory and can show our fellow citizens the way. As we turn the corner on this ordeal, let it be us who is holding the light!