2.\tToday 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.
3.\tLiving 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.
4.\tAnd 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.
5.\tEven 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.
6.\tI, wh