One of my teachers died. “Moved into the spirit world,” is how his friend described the transition. He died from ALS, losing the use of his muscle groups, one by one, starting with his arms, his hands, finally his neck and throat, a tragedy for anyone but especially for him, an artist, composer, pianist, and writer, a creative person in need of fingers and hands. Over time it had become difficult to understand him when he spoke since he was limited to being able to sound out words only from the back of his throat. And yet, unwilling to halt the expressions of his heart, he continued to attempt to communicate with everyone who visited him. In the end he made conversation the best way he could, using the only limb that he had left that worked, the big toe on his right foot.
An alphabet board had been made for him so that letters were printed into small boxes on a flat piece of cardboard positioned at the end of his bed. Using this homemade contraption, he spelled out his feelings, pointing to one letter at a time. It made for arduous communication but he was determined not to give up. He even managed to express his sense of humor about this new way to talk, spelling out for me, “I-t-s n-o-t h-a-n-d-y, sliding his foot across the bed marking the end of a word before starting the next one,” i-t-s f-o-o-t-y.”
He would not talk too much about the end of his life; it was just not the way he thought about or processed his experience. Having spent a lifetime learning how to be present only to the moment at hand, living life one day at a time, he would not make a plan for his future. His refusal to participate in making these plans not only frustrated members of his inner circle of friends it also frustrated members of his hospice healthcare team. Still, even under pressure, he would not tap out an agenda.
He liked me to read to him, mostly nineteenth century Spanish poetry or the history of Buddhist teachers, picking the author and book using that dexterous big toe. Once, during one of our last conversations he said he wasn’t quite ready to go. I knew he meant death and I knew this was important. “Why is that?” I asked, watching as he considered his response, knowing that each word he chose required great effort, both for him to spell it out and for me to decipher. “T-h-e-r-e a-r-e t-o-o m-a-n-y p-o-e-m-s l-e-f-t t-o w-r-i-t-e,” he tapped and nodded as I spoke out each letter until it became a word.
“Yes,” I said, understanding, knowing how much he loved words, loved writing sonnets, verses, and prose.
“A-n-d I a-m a t-o-e-t.”
I spelled out the last word as he tapped out the letters, and then laughed out loud. “So clever,” I respond.
And he slid his foot beneath the covers on his bed, leaned back against his pillow and grinned.
You are the light of the world!
PS. NMCC is in need of office space. We're a two person staff, preferably looking for church space. If you have any ideas, please let me know! Thank you!