I turned 58 last week, with Gaucher, and for me that is a pretty big deal.
When I was diagnosed I was five years old. I only knew two other people back then with the illness, my brother, Richard, and a girl that lived next to my grandfather. She died at 21, so my future looked a bit bleak. Doctors had little encouragement for me. It was a different time. Pre-enzyme meant that whatever Gaucher wanted to throw at me, I just dealt with. Hospital stays, spleen removed, bloody noses, decaying bones, and a litany of other annoying symptoms filled my days and thoughts. There was that early death everyone predicted. That was a worry. So I lived my life accordingly and made no long terms plans.
When I was six I went to NIH to give blood and bone marrow for research. I was told that it was all worth the annoyance because “one day there will be a treatment,” but I never really believed it. I did have a fortuneteller at a bodega read my cards. He told me I was sick in my blood but they would start giving me drugs and I would be okay. He was oddly on target, so I took solace that a Santeria priest believed that I had a future. That was the only reassurance I had for many years.
Twenty-nine years after I gave that marrow, I got news that a very expensive drug was finally ready. Exciting, right? Well, yes, but it meant a major readjustment. I now faced 20-30-40 years I never expected to have. My retirement plan had been to die and be done with it all. Now, thanks to Western medicine, my life had been extended and I was not prepared.
The treatment also had a profound effect on my artwork. For most of my life, from my first hospital stay until the treatment, I had created art about my illness. It was so easy to be Ted-centric back then. Now many of my symptoms were gone and, with them, my artistic motivation. I still wanted to do work about illness and mobility, and settled on what I eventually called “Scarred for Life.” This on-going project tells the stories of patients’ lives by making prints of their scars. Because I spent so much time as a child in the hospital, I am comfortable around people with challenges, scars, and physical imperfection, and I love hearing their stories. The project is a huge success and gives my life renewed direction.
I often wonder how my life would have turned out had I not been born with this stupid illness. I would probably have managed a full-time job, but not gotten the chance to travel the world telling stories and exhibiting my work. I would not have met and gained strength from this amazing group of Gaucher patients.
All in all, I lucked out. Even with 20 or so bad years, I am at peace with what life dealt me. My brother was not so fortunate. Richard was a singer and creative artist but developed Parkinsons and other symptoms from his Gaucher. He spent the last eight years of his life slowly losing everything that defined him. It was difficult to watch him deteriorate in a nursing home, wondering why my life got better as his got worse. There was no rhyme or reason to why I was traveling and falling in love, and he, isolated, could not walk, speak or make art.
We have to remember that this illness affects each of us uniquely, making it even more vital that we stick together.
-Ted Meyer; Los Angeles, CA
To see Ted’s art visit tedmeyer.com.
To learn about Ted’s work with the medical community visit ArtandMed.com.Advertisements