Foreword

Utterly in Jesus’ love
I rejoice.
Search your heart.
Find Jesus
by giving up your pretensions.
Hear Jesus.
Send His touch
with gifts of compassion.

Written by our daughter Claire, this prayer is a wonderful example of her inspiring faith and celebration of life.

When she died in December 2002 at age 19, Claire was studying first year math and physics on scholarship at the University of Victoria. She wrote that her vocation was to learn about the mysteries of the universe and to open the mind of God. She also loved poetry, physics, swimming, eating out, opera, dance concerts, and especially loved going to Vancouver for big musical productions.

Born 1983 in Victoria, British Columbia, Claire lived at home with her parents and her younger sister, Lucy. Because of a genetic condition, Claire was very small (even at age 19 she weighed less than 55 pounds) and had very poor muscle control. She needed a wheelchair, extensive posture support and help with every aspect of daily living. Asthma was a problem for many years. Communication was a challenge because she couldn’t speak and she didn’t have enough consistent control over her muscles to use any of the available computer access technologies. Even her eyes didn’t always look where she intended.

Claire sometimes referred to “my circumstances” but she never referred to herself as disabled. In response to a comment that her body was a prison, Claire spelled out: “My body is what I have to work with.” When asked to write a motto that expressed her approach to life, Claire wrote: “Heal thyself.”

From a very young age, Claire loved to look at books, to be read to, and to point to items on a page. It was with some surprise that we realized that Claire, at age 3, was pointing to the words on the page, not the pictures.

She learned to use her eyes to make choices and with her right hand she could point to areas on a letter board of her own design that organized letters into 5 groups and 5 colours. However, her eyes and hand would not always go where she intended and it was necessary to confirm her choices. After each “point” she would often need help to reposition her hand and to relax the muscles. Communication this way was very slow (15 -20 words an hour) and often very tiring for Claire.

Claire wouldn’t spell out the entire word. One or two letters and the context was often enough to narrow the intended word to 2 or 3 possibilities.

Language was so important to Claire. She insisted on getting exactly the word she wanted. However, once a line was spelled out, that was it - there wasn’t time to go back for revisions. Original work, especially poems and prayers, took a long time to spell because each word was so important and often her choice of word was unexpected. Much of her writing is simple and spare but she also enjoyed involved, wordy constructions such as A Love Song and Juliet’s Soliloquy - in my words.

Claire was welcomed at Monterey Elementary School (grades 1 -7) and Oak Bay High School (grades 8 -12). She attended regular classes with the help of a special education assistant who would wheel Claire to classes, hold her textbooks, and help her communicate. Claire never had any difficulty with course material, even learning to do complex math problems in her head. But demonstrating her understanding was often a challenge. Multiple choice questions worked in many situations. She worked out more complex problems using a communication board customized for each problem.

English assignments took a long time, often only one or two sentences a day. However, she could get to the heart of a story quickly. When there was very little time to write a book report on Dickens’ A Christmas Carol, Claire skipped over the Christmas ghosts and Tiny Tim and simply wrote: “learn from your mistakes.”

Claire was 9 when her sister Lucy was born and shortly after that she wrote the short piece entitled Lullaby. Lucy used to ride on the tray of Claire’s wheelchair and then on Claire’s lap and finally on the footplate of Claire’s wheelchair. Lucy was so proud of Claire and was often the willing hands and feet to help her.

Claire attended church with family fairly regularly (first at St. Mary’s Anglican Church and later at St. John the Divine Anglican Church). She especially enjoyed the music. She had a deep faith from an early11 age and wrote with such profound insight based on her own reflections, life experiences and relationship with God. She used to write prayers for the family service at St. John’s and the ones we have are included here. The last prayer entitled Death is Not the End was written by Claire for her grandmother’s funeral.

Claire was the inspiration for a remarkable project in which the University of Victoria Assisted Technology Team and other volunteers are working to develop new communication technologies. One of the most cutting-edge projects involves using changes in brainwave patterns to make choices. Other projects involve the use of eye tracking and electrical signals produced by muscles.

Asked about the project, Claire wrote: “Imagine you are playing the piano and no one can hear you. That is how I feel. Thank you for putting sound to my music.”

This project has been profiled in many newspaper and magazine stories (available on the internet by searching Claire Project). After reading an article in Maclean’s magazine one contributor wrote: “There are very few things I have felt compelled to do but when I read Claire’s story I felt compelled to contact the university and do what I could to help.” This project is ongoing and can be supported by contacting the University of Victoria, BC.

The challenge for each of us who knew Claire personally or through her story and writings is to work at bringing into our own lives some measure of the wonder, joy and grace that filled her life.

John and Melinda Minkley