Courtesy of Catherine Royce
Catherine Royce was diagnosed with ALS when she was 55. She was a dancer for 30 years and a former deputy art commissioner for the city of Boston. Royce lives in Dorchester, Mass., where the family's dining room has been converted into her bedroom.
I believe that I always have a choice. No matter what I'm doing. No matter what is happening to me. I always have a choice.
I have spent my life typing on a keyboard, but now I can no longer use my hands. Every day I sit at my computer speaking words into a microphone instead of typing. In 2003, I was diagnosed with ALS, Lou Gehrig's Disease. Over time, this disease will weaken and finally destroy every significant muscle in my body. Ultimately, I will be unable to move, to speak and, finally, to breathe. Already, I am largely dependent upon others. So every day I review my choices.
Living with ALS seems a bit like going into the witness protection program. Everything I have ever known about myself — how I look, how I act, how I interact with the world — is rapidly and radically changing. And yet, with each change, I still have choice.
When I could no longer type with my hands, I knew I could give up writing entirely or I could go through the arduous process of learning to use voice recognition software. I'm not a young woman. This took real work. Interestingly, I write more now than ever.
Every day I choose not only how I will live, but if I will live. I have no particular religious mandate that forbids contemplating a shorter life, an action that would deny this disease its ultimate expression. But this is where my belief in choice truly finds its power. I can choose to see ALS as nothing more than a death sentence, or I can choose to see it as an invitation — an opportunity to learn who I truly am.
Even people in the witness protection program must take with them fundamental aspects of themselves which can never change. What are these aspects for me? So far I have discovered many unique things, but one stands out above the rest. I have discovered in myself an ability to recognize, give and receive caring in a way far deeper than anything in my life before. I have always been an intensely private and independent person. But now I have allowed a wide circle of family and friends into the most intimate parts of my life.
Previously, I would have found such a prospect appalling. I would have assumed that living with ALS meant a life of hardship and isolation. Instead, because I believe that I always have a choice, I opened myself to other possibilities. And now the very thing that at first seemed so abhorrent has graced my life with unaccustomed sweetness. It was always there. Only now I have chosen to see it.