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.