"Poetic and practical in embracing the inevitable": MinnPost on 'We Know How This Ends'
About two years after Bruce Kramer was diagnosed with amyotrophic lateral sclerosis (ALS), he lost the ability to hold a pen or tap a keyboard. As the neurodegenerative disease progresses, motor neurons in the brain stop communicating with the body’s muscles, ultimately resulting in paralysis. Kramer had been writing about living while dying in the popular“Dis Ease Diary” blog and he was putting together a book based on his essays. And then this. Talk about writer’s block.
Not many years ago, a patient at this point would have been silenced. For Kramer, however, this was an opportunity to learn a new language. The former dean of the College of Education, Leadership and Counseling at the University of St. Thomas wanted to continue to connect with his audience. Now, with the help of Dragon speech recognition software, he can do so, and quite adeptly. It was not an easy transition, but this new method enabled his thoughts to take flight.
“I used to think with my fingers. Now I write by speaking. Making that change has been the biggest crisis I have dealt with, with ALS. I suddenly needed to think verbally, to hear what I was saying and compose out loud. It was incredibly challenging to move to an aural thinking process,” he said in an interview via Skype and FaceTime. “Fortunately, I was always a person who listened.”
The chapters in “We Know How This Ends: Living While Dying” (University of Minnesota Press) are economical in length but poetic in clarity and impact. This, Kramer discovered, is one of the “gifts” ALS has given him, the ability to listen to his own thoughts and share them in a deeper, more incisive way.
“Writing for voice-to-text causes you to be more circumspect about what you say. There is more weight on word choice and little time for excessive language. I came to appreciate the fact that my writing could take on this amazing, jazz-like quality. In poetry, you are trying to be so concise that it forces you to utilize vocabulary or structures that have deeper meaning than you usually find in non-fiction.”
Kramer's book explores the ways he's making his last years among his best years, instead of wasting precious life in self-pity or debilitated by grief. With a heightened sense of value, he embarks on a last visit to places he has lived and loved around the world. He immerses himself in music, ponders matters of faith, watches his family expand around him, receives a blessing from the Dalai Lama, and remains funny, philosophical and generous in his wishes to give his fellow travelers a guidebook to a better death. Throughout, he remains grounded in his own reality. He goes skydiving — but then soon after, he flips his wheelchair, a frightening and humbling reminder that he is not overcoming, but rather, continually adapting to a body that is changing day by day even while his mind remains vibrant.