Published May 2016
I can remember parts of my early childhood: playing outside, riding horses, climbing trees — being teased by my older brother. Of course, I didn’t know then that I would be living with cancer.
I have metastatic fibrosarcoma. I was 14 when I was diagnosed. That was 34 years ago. It started in my face and it’s moved to my abdomen and leg. I also developed a second kind of tumor, called a desmoid tumor, in my shoulder and arm.
It seems that I’m always at the hospital having tests, having scans, seeing doctors. That has pretty much become my norm.
Because of the tumors, I have limited use of my left arm and weakness in my legs. I’m fatigued because my immune system has taken such a big hit from the cancer and the cancer treatments. I get sick all the time. A facial graft makes eating difficult for me.
I find it’s helpful to get outside. I used to hike a lot, but I can’t do that anymore. So recently I’ve taken up bird watching. When I concentrate on identifying a bird, it distracts me from my pain.
Despite my disability, I live a meaningful life. Through my artwork, I interact with my community and get a lot of response. Besides sharing beauty, I’m really teaching people about difference. I’m also serving as a role model and helping other people cope with their disabilities.
Without Social Security, my life would be a horror story. I would have to scramble for my basic needs and might be living on the streets. I would be a lot sicker. I honestly don’t know how I would provide for myself.