Death is inevitable yet, for most of us, it’s something we don’t like to think about until we absolutely have no choice. 

Angela Parker-Brown in her book Writing with My Eyes: Staying Alive While Dying became one of those with no choice. Rather than rage against the dying light, her book is an elegiac survey of gratitude. Oh, Angela admits that it’s not easy to come face to face with her death while still only in her forties, but she does it with grace and humour. 

The term “writing with her eyes” is not a pat metaphor for taking a good long look at her life; it’s literally how she wrote the book. You see, Angela has ALS, or amyotrophic lateral sclerosis, “a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord,” and the device that she used to write her book is called the Tobii Dynavox. 

It literally helps her type with her eyes.  

Angela started this book in January of 2022. The fact that this book has found its way onto the bookshelves only a few months later is a testament to the miracles of modern technology on multiple levels, but also to Angela’s unyielding hope, courage, and fortitude that animates the pages of her brief memoir. 

A slightly numbed baby toe in her thirties was her first inkling that something was amiss. By the time her intuition was confirmed in 2018 with medical tests, Angela’s foot had become “sleepy,” and she required a cane to get around.  

At the time she had twin adolescent girls and was a single mom. Making life as normal as she could for them while the disease occluded her life was the focus for Angela. She organized a once-in-a-lifetime trip to Disneyland for her girls with the help of a caregiving companion. After the trip, she sat her girls down to tell them what was going on. 

Through it all, Angela had the love and support of her family, the Truro, N.S., community at large and a government-funded health care system. Systematically and with gratitude in her heart, Angela accepted the help she needed to live as she rapidly spiralled into total dependence on machines and a team of caregivers. Yet, that did not stop her from writing this book. 

While reading of the ups and downs for Angela, and being privy to a dark secret from her childhood, you can see how cathartic the process of putting her journey down on paper was for Angela. In a way, it’s the stories she shares that make her life bearable. Being able to communicate who she is, what she’s going through, and how much her family means to her is a gift she gives to herself, as well as an enduring legacy for her children. 

While Angela’s death, as all of ours, is inevitable, her choice to document her journey is a priceless gift to all who read her story. 

Elizabeth Johnston is a creativity and story coach.