By chance, I learned two weeks ago that a classmate of mine from Xavier University passed away of ALS in 2015. We didn’t know each other especially well, but we ran in some overlapping social circles. I remember him as a thoughtful, smart, slightly eccentric, very amiable guy. His surviving spouse, also an old friend of mine, shared with me a link to the blog he kept during the one year he had between diagnosis to death. ALS took him quickly.
I read his blog in reverence. My old classmate, in rapidly declining health, used his last year to celebrate life, contemplate philosophy, literature and religion, write and share haikus, visit with good friends and family, enjoy a glass of wine with his wife, find humor and subtle symbolism in his failing body, and approach impending death with grace and equanimity. I recognized how our immersion at Xavier in philosophy and theology – thank you , Jesuits – better equipped him to address suffering and dying, and, like the Stoics, be better for it. I’m sure there were plenty of terrible moments of struggle, anguish and pain, and he let on that that was part of his life as well, but that was not the part that defined him. What defined him was his humanity and his broad spirituality. His blog was a huge gift to me, a reminder that I can aspire to meet death and dying with the same grace that he did; that confronting one’s mortality can make you a better person.
The question I am wrestling with is this: how can I simultaneously fight for life and live life well? Can I aspire to the same kind of centeredness and peace that my classmate achieved while also jumping into the contentious, even toxic world of ALS policy advocacy without making myself miserable and potentially wrecking the time I have left? Many (not all, thankfully) of the people with ALS engaged in trying to fight for policies and research funding to improve their chances of surviving the disease seem so bitter, angry, and unhappy. It’s demoralizing, and not who I want to become.
For now, my conclusion (subject to change): I’m going to try to find a role in the ALS advocacy world where I can be of service, if not for me then for the next generation of people with ALS. But I will not let that policy engagement destroy my aspirations to celebrate life, enjoy love of friends and family, and find a measure of the peace that my classmate achieved.