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I’m reading the book, Dancing with Elephants, by Jarem Sawatzky. Jarem has inherited the genetic terminal illness called Huntington’s disease. Watching his mother, and nearly all of her siblings, die of Huntington’s disease made the possibility of his own future illness undeniable.
Huntington’s is passed from parent to child. It is a dominant gene, so if you are born with the gene, the disease will be your cause of death. But before that happens, the disease will take absolutely everything from you that makes you who you are. It changes personality, ability to move, to communicate, causing you to become silent within your own body, still thinking, but unable to express those thoughts. Symptoms usually appear sometime between the ages of thirty and fifty.
Jarem was a college professor until soon after his symptoms appeared. He taught peace and conflict studies at Canadian Mennonite University. He wrote. He did research. And now, even as he faces his early symptoms, he has chosen to write about it.
This is no ‘poor me’ story, though. Jarem has written about finding ways to heal emotionally and spiritually while actively living with a debilitating terminal illness.
Using rituals of health scheduled into his daily routine, Jarem actively chooses mindful acceptance of his reality, even as he also actively chooses healthy spirituality, exercise, community, accountability, and celebration, as ways of nurturing himself and his family.
In the chapter on community, Jarem writes unflinchingly of the life he had as his mother’s illness progressed. Her personality changed, and she denied for years that she was sick, even as her marriage ended, and her older son left home as soon as he could. Jarem was left, living with a sick and abusive mother and caring for her as her illness progressed.
Now he is ill. He lists his symptoms carefully, speaks of their impact on his relationship with his family. When he and his wife argue, there often comes a moment when he sees fear in her face, and her eyes mirror back to him his disease. They recognize that they need more. They must expand beyond their nuclear family. He and she together have decided to form a circle of trusted friends to walk with them through this.
The friends are come together regularly to listen. They have attended conferences on Huntington's disease as a group. They have helped with meals, and they have held each other as well as Jarem and his wife and children accountable. They listen well, support well, confront when necessary, and make time for fun and togetherness.
Jarem’s family, and Jarem himself will have the support that he and his mother lived without.
Written simply, and easy to read, this story contains depth and a challenge to turn to new ways of seeing aging, loss, and end of life. Each section of chapters includes wisdom gleaned from another writer or friend that relate to the themes Jarem tackles. The title, “Dancing with Elephants” aptly describes the focus of the book. Looking at decline in an accepting and creative way is novel, and difficult for me to grasp. But I want to. This feels like truth, and I’m reaching for it.