Above all else, Summer Whisman was a storyteller. She loved meeting new people and learning about their lives, as well as sharing stories from her own experience. After she was diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 32, she decided to write a memoir. The manuscript chronicles her first symptoms and eventual diagnosis with ALS, as well as her life before that teaching English in Sapporo, Japan, and waiting tables in Colorado, where she went to school. At the very beginning of the book, Whisman writes:
I must warn you: just because there happens to be an incurable and fatal illness in the title of this book, it does not mean the following pages have been produced to inspire you and make you cry. These sentences are meant to entertain, make you laugh (I hope) and provide you a glimpse into the world of Amyotrophic Lateral Sclerosis (ALS). If you are seeking detailed guidelines to overcome adversity and learn how to face challenges gracefully, I’m not sure you’ll find what you need.
The prologue captures Whisman’s attitude towards her tragic situation — unflinching, realistic, and somehow imbued with a sense of humor.
After her diagnosis with ALS in 2012, the degenerative neurological disease robbed her of her ability to do a lot of things for herself, including walking, eating, and talking. By 2015, she communicated with the help of a computer that read the movements of her eyes. As you can see in the video above, it was a very slow and painstaking way to write even a few words, but Whisman finished writing her book this way after she could no longer use her hands or grip a stylus in her teeth to peck out sentences on a keyboard.
SUMMER’S “SUPERHERO” CAREGIVER
Whisman’s dad, Dave Whisman, was her primary caregiver. He’s retired from job as a shipping supervisor for Weyerhaeuser and Summer lived with him in the house where she grew up in Longview, Washington. She referred to him as her “superhero caregiver,” and the two clearly had a close and loving relationship.
When asked to describe his daughter in one word, Dave Whisman chose “stubborn.” He was quick to point out that she likely inherited this trait from him. He first learned about her symptoms when he drove her back to the Northwest after she finished her master’s degree in English/Rhetoric and Composition at Colorado State University.
It took months to get an official diagnosis, as doctors did a battery of tests to rule out any other possibilities. Whisman said he vividly remembers the day he learned his daughter had ALS.
“I was leaning up against the wall and her mother was sitting by Summer in a chair in the doctor’s office and the doctor came in and said she had ALS and it was overwhelming,” he said, describing his feeling at the time as “kind of numb.”
GINO THE WONDER DOG
About two weeks after her diagnosis, Whisman adopted her dog, Gino (aka ‘Weeno,’ aka ‘Gino the Wonder Dog’). She said after that he became an essential part of her daily routine and it was hard to imagine life without him.
In her book, Whisman writes:
We would be very bored without Weeno, but he is under the impression that he is my only caregiver, and all the others are simply incompetent interlopers trying to harm his mom. He thinks his job is to be with me at all times.
When Whisman cried, Gino hopped up on her lap and licks the tears from her face.
SPENDING TIME WITH FRIENDS
Many of Whisman’s friends from Portland came to visit her at her dad’s house regularly. Jody Weinstein met Whisman while waiting tables at a restaurant in Portland. The two remained friends for over a decade.
“I think (on) my first day, I saw her and she was just the life of the party — this funny, quirky lady,” Weinstein remembered. “She’s just cool.”
As the disease progressed and her body changed, Whisman gave away some of her favorite clothes and shoes to friends, including Weinstein. She showed off a pair of shoes Whisman had given her.
“Every time I wear them, of course, I have this little twinkle in my eye,” she said.
Whisman’s dad and friends raised money to get her a wheelchair accessible van and Weinstein said that gave them the ability to spend a day together browsing shops in Portland or hanging out on the beach. After Whisman’s movement became more restricted, she and her friends pretty much limited their visits to the home.
“The last time I came up, we sat around and played music videos and just laughed,” Weinstein said.
As much as Whisman enjoyed these visits, her ability to participate in the conversation was limited by the computer she used to communicate.
“I want to respond to a friend’s comment, but it will take a while to type my response. So, I end up sharing my thought well after the conversation has shifted,” Whisman explained. “Oftentimes, I end up deleting my response to avoid breaking up the flow of the new conversation that started while I was taking forever to type.”
DEATH WITH DIGNITY
Not long after her diagnosis, Whisman decided to use Washington’s Death with Dignity law, which allows terminally ill patients to obtain medication to end their own lives. Whisman has the medication, but when we spoke with her, she hadn’t decided exactly when she would take it.
“When it gets to the point when life becomes unbearable, I will take advantage of the law,” she explained. “It’s difficult to say, ‘This is the date I want to die,’ but I am confident that I will know when it’s my time to go.”
Whisman’s dad, said that at first, he didn’t understand her decision.
“I disagreed with it,” he said, “I couldn’t see her doing that, didn’t want her to do that.”
His experience watching his own mother struggling at the end of her life after a stroke is part of what changed his perspective.
“For Summer, she knows what she wants to do. She’s a smart woman and I support her 110 percent,” he said.
Asked whether or not he plans to be with his daughter when she decided to use the medication, Whisman didn’t hesitate.
“Absolutely,” he said. “I wouldn’t be anywhere else.”
Summer Whisman died on February 13, 2016 at the age of 36. Her memoir was published as an E-book shortly before she died.