I don’t know why I have lived so long with ALS, but I do know one thing. Since I was diagnosed in 1981, it is and has been critically important to stay open to the lessons that ALS has been teaching me and to pass them on. In essence, the presence of death has become my advisor, continually whispering words of wisdom. I now have a much clearer vision of what’s important and what really matters, knowing that we can be healthy one minute and dying the next, here one minute and gone the next. Embraced in this awareness, I am more able to seize the day and fully live in the wonder of the moment.
I also look at life through a very special lens. ALS has humbled me and forced me to give up the illusions of perfection and control. It has brought home how crucial it is to accept with compassion all of who I am and who you are. It has given me a prospective of how it is possible to live a magnificent life even if infinitely flawed or wounded. I share the lessons with my clients and students about the dichotomy of how fragile we are and yet how powerful and enduring we can be. I offer myself as living proof that real transformation and ‘beating the odds’ is always possible, and that hope is the engine of change.