The Seven-Degree Artist
My disease is measured in degrees: 180… 170… 150… 125… 100… 70… 40… 20… 17… 15… 12… 10… 9… 7…
I’m hoping that I never get to zero.
I started with the normal 180 degrees of peripheral vision, the vision used to the left and right, above and below what our central vision sees when we look straight ahead. I am now down to seven degrees— less than 10% remains of my sight. That’s disconcerting and makes me a little nervous. The disease has also diminished my hearing, which is down to less than 10% of what you likely have. I am almost completely deaf and blind. But not quite.
I have Usher syndrome, a rare genetic degenerative disease that robs a person of sight and hearing. I didn’t know I had Usher until I was thirty.
I earn my living as an artist. Art has been my day job and my full-time vocation since college. I continue to earn my living painting portraits. I laugh when I realize that I am a legally-blind artist.
It is a demoralizing thing to be aware that some of me is slipping away, like watching your house and the property you’ve cultivated for decades slip into the ocean. I should say it can be demoralizing. If I let it be. If I let myself go there. But I am human, and dying makes me sad. And nervous. I am not afraid, though.
Perhaps there is something to be said for ignorant bliss. To ignore the demanding truth and enjoy the moment. Bliss may numb my awareness to reality and its companion, pain, but it also numbs me to the magnitude of the gift that each moment is. I remember when I was diagnosed, how terrified I was. I remember seeing the red numbers on my clock radio when I woke up the next morning. I thought they were incredibly beautiful. I was so happy. Simple things.
Note to readers: This is an excerpt from my memoir in progress. The story thinks through the process of not merely an enduring disease, but the process of living in such a way that each day is something to look forward to.
