For decades, Boston listener Catherine Royce was a dancer and arts administrator. Now ALS is slowly consuming her body. Even with all the things she’s losing, Royce believes she still has a choice.
I believe that I always have a choice. No matter what I’m doing. No matter where I am. No matter what is happening to me. I always have a choice.
Today I am sitting at my computer, speaking these words through a microphone. Although I have spent my life typing on a keyboard, I can no longer use my hands. Every day I sit at my computer speaking words 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 go through the arduous process of learning how to use voice recognition software. I’m not a young woman. This took real work. Interestingly, I write more now than ever before.
And at an even more practical level, 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? This is what I learn every day, and 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 previously. Others have seen this in me as well.
I, who have always been an intensely private and independent person, 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 might have felt I had no choice but to embrace the assumption that living with ALS means 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. This sweetness underscores and celebrates my belief that I always have a choice.
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.
Independently produced for NPR by Jay Allison and Dan Gediman with John Gregory and Viki Merrick. Production assistance from Richard Knox.
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