A 50-year-old single mother with Amyotrophic Lateral Sclerosis (ALS) has published a new book about living with the disease. And she used a eye-gazing technology to tell her story.
On Saturday, Angela Parker-Brown, author of Writing With My Eyes: Staying Alive While Dying, hosted an official book launch on the front lawn of her home located on The Island, one of three historic Black communities in Truro.
In the book’s intro, Parker-Brown explains how she uses both an eye-gazing program and device to communicate and write with her eyes.
“This celebration is not about me,” Parker-Brown said using the same technology she used to write the book. “It’s about all of us and our shared love of reading books, and about opening our minds to share the experiences of others. I often say that it is your encouragement that started me on the journey to write this book. It is the culmination of that journey that brings us together today.”
Impact of the disease
Parker-Brown started developing symptoms in 2016 and was officially diagnosed with ALS in 2018.
Symptoms of ALS include a gradual onset of progressive muscle weakness. Patients eventually require permanent ventilatory support their breathing as their breathing muscles are also affected.
The technology Parker-Brown uses to communicate is called PCEye and uses a program called Grid 3.
Every morning, with the help of her caregivers, the PCEye device is calibrated through a process where Parker-Brown must watch a black dot on her computer screen make a series of maneuvers, which then allows red dots to track her eye movements.
From there, Parker-Brown can operate her computer, write, browse the internet, use social media to communicate and stay informed, do banking, and use a text-to-talk program to communicate with her daughters and other people around here.
“This disease takes away your mobility. All you can do is blink, and that’s no lie,” said Parker-Brown’s brother, Wayne Parker, in an interview with the Examiner after the book launch. “And she can still feel pain. She knows everything that’s going on around her.”
“It’s impacted Mom and (our sister), Bev, the most because, even though we do have caregivers, they are the primary caregivers. They’re there every single day. So, they basically put their lives on hold for four years so that they can look after Angie and the girls.”
Wayne Parker credits extended family, friends, and her caregivers for her longevity and quality of life.
In addition to unforeseen complications caused by the COVID pandemic, Parker also talked about some of the other challenges his family faces as a result of his sister’s ALS.
“When she’s trying to talk through the eye gaze, you have to really sit and wait for her to type in what she says. You can’t assume because then frustration can set in, those types of things. So, there’s a lot of patience required on her part, caregivers’ part, everybody concerned.”
‘The most important book you will read this year’
Writing With My Eyes was published by Pottersfield Press, whose publisher, Lesley Choyce, taught Parker-Brown English in the Transition Year Program (TYP) at Dalhousie University. Speaking with the Examiner just before the start of the book launch, Choyce said Parker-Brown reached out to him “out of the blue” through an email.
“I didn’t know her story at all, and her story, of course, is in the book. So, as soon as I read the manuscript I kind of got the whole story about her life since TYP way back in the early 1990s right up to the present,” he said.
“She sent this thing, and it was a beautiful manuscript, very, very spirited, powerful book. And given the circumstances we sort of got right on it and decided to publish it.”
Choyce told the crowd “it was very much a gift to be able to publish” the book, and that it sold out almost immediately upon its release.
“There’s a recent review that came out that said, ‘If you read no other book this year read this one. This is the most important book you will read this year.’”
Surrounded by family, friends, caregivers, co-workers, and community members from The Island, The Hill, and The Marsh, all historic Black communities in Truro, Parker-Brown greeted her guests, answered questions, and read several excerpts from her book.
In one of those excerpts from a chapter called Little Bits of Everything, Parker-Brown talked about staying positive, even when she has bad days.
When asked by an audience member about her writing process she said, “When I hear something that gets me thinking or consumes my thoughts, I write it down. Then I start writing about it. If I don’t write about it right away it consumes my thoughts, so I figure that it’s my sign.”
Several other members of Parker Brown’s family and friends spoke at the launch, including Parker Brown’s parents and siblings. Community member Ashton Jacklyn sang a medley of songs that included Stand By Me and Isn’t She Lovely.
Carolyn Thomas, mother of Parker-Brown’s university roommate, traveled from Preston to give remarks before offering a closing prayer. Parker-Brown’s 12-year-old twin daughters, Paris and Parker, then presented their mother with flowers.
Using a messaging app, Parker-Brown said the book launch far exceeded her expectations, and it gave her “the opportunity to savour” time with friends and family.
“These are the makings for an amazing book launch,” she said. “It doesn’t hurt being told how inspiring your book is, or how validated your words made someone feel, or even to be told how a person is helped through their journey with a loved one who is experiencing or experienced their own journey with ALS. How humbling. How blessed that I get to share that bond.”