Above all else, Summer Whisman is a storyteller. She has always 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 The unpublished manuscript chronicles her first symptoms and eventual diagnosis with ALS, as well as her life before that teaching English in Sapporo, Japan, and waiting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.
Since her diagnosis with ALS three years ago, the degenerative neurological disease has robbed her of her ability to do a lot of things for herself, including walking, eating, and talking. She currently communicates with the help of a computer that can read the movements of her eyes. As you can see in the video above, it's 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
Summer Whisman was diagnosed with amyotrophic lateral sclerosis (ALS) at age 32. She's 36 now and has lost her ability to walk, speak, or move her hands. She currently lives with her dad, Dave Whisman, who is her primary caretaker.
John Rosman / OPB
Whisman's dad, Dave Whisman, is her primary caregiver. He's retired from job as a shipping supervisor for Weyerhaeuser and Summer lives with him in the house where she grew up in Longview, Washington. She refers to him as her "superhero caregiver," and the two clearly have 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 since then he's become an essential part of her daily routine and it's hard to imagine life without him.
Summer Whisman's dog, Gino.
John Rosman / OPB
In her book, Whisman writes:
“We would be very bored without Weeno, but he is under the impression that he is my <em>only</em> 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 cries, Gino hops up on her lap and licks the tears from her face.
SPENDING TIME WITH FRIENDS
Jody Weinstein has been friends with Summer for 11 years and travels from Portland to Longview to visit her regularly.
John Rosman / OPB
Many of Whisman's friends from Portland come to visit her at her dad's house regularly. Jody Weinstein has known Whisman for 11 years. The two met while waiting tables at a restaurant in Portland.
"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 her the disease has progressed and her body has changed, Whisman has given away some of her favorite clothes and shoes to friends, including Weinstein. She showed off a pair of shoes Whisman had given her.
Summer Whisman was diagnosed with amyotrophic lateral sclerosis, known as ALS, at age 32. She's 36 now and has lost her ability to walk, speak, or move her hands. Summer has given away a lot of clothes she can no longer wear, including this pair of shoes, which she gave to her friend Jody Weinstein.
Julie Sabatier / OPB
"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. Now that Whisman's movement is more restricted, she and her friends pretty much restrict their visits to the home.
"The last time I came up, we sat around and played music videos and just laughed," Weinstein said. "We talk or we joke or we reflect about the past or tell funny stories."
As much as Whisman enjoys these visits, her ability to participate in the conversation is limited by the computer she uses 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 hasn't decided exactly when she will 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 decides to use the medication, Whisman didn't hesitate.
"Absolutely," he said. "I wouldn't be anywhere else."