Reflections on life and death

Extract

Patrick began writing a journal in 1998 just before he retired from paid work as a result of effects of Multiple Sclerosis. He continued to write irregularly over the subsequent 5 years until he moved into a long-term care facility. He used the journal as a writing exercise, but lived with the frustrations of having to rely upon the computer first to translate his spoken words into written text and then to speak those words back to him. Although Patrick was legally blind, a wheelchair user, and lived with debilitating fatigue, he never let himself be defined by those features. Rather it was his imagination, humor, and quality of thought that captured those around him. These journal excerpts document his reflections on “life, the universe, and everything” in the words of Douglas Adams, a favorite author. The poems were written with the assistance of scribes while Patrick lived in a care facility. Patrick died on January 11, 2004 of pneumonia, having embraced the process of dying as he had his living over the previous 45 years. His family, including his research and life partner, Deborah Stienstra, and their children Rebecca and Cailum, celebrate his life and contributions.