When our “normal” is threatened

  • BOS

Published: 5/14/2019 10:31:55 AM

The first words that Patten Hill resident/writer/hiker/gardener Claire Blatchford writes in her latest book – “Rolling With The Waves” – are these: “Living with Parkinson’s Disease is about learning to roll with the waves. This could be said about dealing with any chronic condition, any crisis when what we think of as ‘normal’ is threatened or upset.” She is writing about her experience and interaction with her husband of five decades who has Parkinson’s disease.

I met Claire and Ed in 2001. I was one of a half dozen local people or so who trained together for a three-day Avon Breast Cancer Walk from Leominster to Boston. Walking this distance was going to be a challenge for me. But not for Claire. She and Ed were hikers! At age 60, they set a goal of climbing the 47 New Hampshire peaks of 4,000 feet and higher. Ed achieved that goal while Claire has climbed all but four of them.

Ed taught at a Waldorf School on Long Island for seven years. He then went on to teach at a contemporary private school on Long Island for another seven years and also became an educational administrator. Claire taught the deaf at Catholic Charities and later at other schools for the deaf. Next Ed headed a school in Madison, CT, for 11 years at the end of which he and Claire moved to Massachusetts. Then came the founding of the Uplook School in Greenfield for two years followed by an application for a charter school which became the Four Rivers Charter Public School in Greenfield in 2002.

The Four Rivers mission is built on three central themes: nature, technology and community in a curriculum very much influenced by Rudolph Steiner’s educational philosophy that acknowledges the needs of the whole child – academic, physical, emotional and spiritual. I have been privileged to serve on the board of the Four Rivers Educational Foundation since its inception. All this is to say that I have come to know and love Claire and Ed in a variety of ways since 2001.

Over time I have learned more about Claire’s spiritual life through three of her half dozen books – “Experiences With the Dying and the Dead,” “Friend of My Heart” and my bedside table book “Turning: Words Heard From Within,” a Christmas gift from Claire in 2001.

All of us – and that’s a lot of people - were more than dismayed when Ed was diagnosed with Parkinson ‘s disease on his 64th birthday in 2008. In her book’s introduction, Blatchford says that “when receiving a diagnosis [it can] hit one quick and hard below the belt, like a totally unexpected tsunami.”

That was 11 years ago. Having been married for over 50 years, Blatchford writes that “Though there’s much solid ground beneath us the unknowns that come with ‘PD’ (her way of referring to ‘Parkinson’s disease’) are a constant presence in our lives. And she makes it clear to her readers that she is speaking “as a companion on this journey, not as the one with the condition.” Ed chose not to be a co-writer of the book…except for the last chapter entitled “My Story, So Far” which Blatchford invites her readers to “feel free” to skip to “if you want to hear his voice direct.”

“When I look into Ed’s eyes every morning, “Blatchford writes, “and one of the other of us says that wonderful line from John Donne, ‘And now good morrow to my waking soul’ we both know each of us is much more than a physical brain with or without a tank full of dopamine. That knowledge, in turn, calls forth more questions in me: Do we human beings have a mind – a center of consciousness – within ourselves apart from our physical brain? Where might this consciousness reside, and how might one connect with it? And doesn’t this center of consciousness continue even after the physical body has been laid aside?”

The inscription in Blatchford’s book will not surprise those who know her: “This book is dedicated to the Light within each and all of us.”

This book is a must for anyone whose “normal” has been threatened by any life altering disease, accident or, as in my case, aging. That’s when you become aware of what has always been a fact; that you are not in control of your life. “Rolling With The Waves” is a chronicle, a guide for how to embrace and strengthen your very being for the rest of your remaining journey.

John Bos has lived in Shelburne Falls since moving to the village from Ashfield in 2000. After a peripatetic career which took him to many towns and cities, he finally feels that at last he has a hometown because of the people in his life. Comments and questions are invited at john01370@gmail.com.

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