Online plea brings strangers to bedside
It's been several years since Robin Brumett has heard her husband's rich broadcaster voice. Even longer since she's felt his embrace. The last communication came...
Seattle Times staff reporter
It's been several years since Robin Brumett has heard her husband's rich broadcaster voice. Even longer since she's felt his embrace.
The last communication came a few years ago, when she knelt to help put on his socks and shoes and Bert scratched out a note: "If this was reversed, I would be doing this for you. I love you forever."
Bert, 65, has Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS), which affects the motor nerves of the body, causing the muscles to atrophy without impairing brain function. As the disease spreads, it ultimately affects the muscles of the respiratory system, dooming most people with ALS to death by respiratory failure.
Although Bert can no longer talk, move, eat or even breathe on his own, Robin, 64, knows her husband of 40 years still lives inside the withered body. A downward blink tells her "yes," but her intuition tells her everything, from his mood to his opinions.
Knowing that Bert's keen intellect is alive and well, Robin decided if he couldn't go out into the world, she'd bring the world to him.
Not long ago she placed an ad on craigslist, the classified-advertising Web site, seeking people who would come to their home and spend an hour or so talking with Bert about any topic of mutual interest: travel, history, gambling strategies or medicine, to name a few. No rules, no pay, just an hour of conversation — or monologue, really.
Amyotrophic lateral sclerosis
Sometimes called Lou Gehrig's disease, amyotrophic lateral sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles.
Individuals with ALS lose their strength and the ability to move their arms, legs and body. When muscles in the diaphragm and chest wall fail, individuals lose the ability to breathe without ventilatory support.
The disease does not affect a person's ability to see, smell, taste, hear or recognize touch, and it does not usually impair a person's thinking or other cognitive abilities.
The cause of ALS is not known and no cure has been found. Most people with ALS die from respiratory failure, usually within three to five years of the onset of symptoms. However, about 10 percent of individuals with ALS survive for 10 or more years.
Source: National Institute of Neurological Disorders and Stroke
In a short time, there were 50 responses, ranging from belly dancers to proponents of holistic medicine.
Thus was born Brumett U, which Robin calls her "college of conversation."
The visitors come to the Brumetts' comfortable, 1903 Richmond Beach home, where Bert's hospital bed and life-support equipment sit center stage in the living room. As around-the-clock caregivers come and go, tweaking knobs and swabbing Bert's dry mouth, one by one Brumett U's professors regale him with tales as varied and wide-ranging as the life the couple once lived.
Tales of adventure
Nadine Joy is full of energy and tales — not of her work as an advocate for the homeless, but of her adventures as a traveler in Latin America.
Dressed in a flouncy green floral skirt, Joy, 48, smiles often as she tells of an impromptu move to Mexico, believing it to be a country where relationships mattered. It didn't occur to her that speaking Spanish might matter, too.
"I spent the first two weeks crying," she says.
Bert's eyes drift and sometimes connect with Joy's — her only feedback except for Robin, who provides conversational asides that put Joy at ease.
Responding to Robin's ad on craigslist was a natural to her, she says. It didn't matter what Bert's condition was. She felt empathy for him.
"My mom always told me we are all like flowers, each just a little different," she says.
Joy tells Bert of a train ride into the country, an amorous engineer and a milagro or "miracle," attracting gift-bearing pilgrims to see a small wooden cross rock back and forth and "walk" when placed on a tilted table. And she told of a small boy who offered to shine her flip-flops.
"I noticed his feet were halfway out of his shoes because the shoes were too small," she says. Even though she was waiting for a bus, she gave her suitcase to a stranger, told the boy to come with her and took him into a market to buy him sneakers.
"I'll never forget his face," she says.
When she returned, her suitcase was already on the bus, which was leaving. The passengers started shouting for her to hurry, grabbed her and pulled her on board with a cheer.
While ALS has no cure, Brumett U and the intellectual stimulation Robin provides "is a brilliant idea. It enriches Bert's quality of life tremendously," says his doctor, Joshua Benditt, an ALS researcher at the University of Washington Medical Center.
"One big problem — [ALS patients] do get isolated and the only people they come into contact with is their caregivers," he said. "People can get out with ALS and get around, but it's really hard."
At the Brumett home, visitors pause to view the photos in the living room. It's only then that one can grasp what ALS has done to a once-vibrant man. Bert is pictured on a skateboard, mugging for the camera with their three children and with Robin.
To each other, they were "Harold and Helen Donut," code names Bert and Robin created so they could leave notes on each other's desks at KIRO-TV, where in the 1960s and 1970s he was the assistant station manager and she was sales director.
They planned their lives carefully. They met in the 1960s when they were both at the University of Washington, graduated with degrees in communications, married after a six-year courtship, bought a home, invested, retired before they were 35, then had three children, traveled the world and spent their days in each other's company.
They pictured retirement sitting side-by-side, sipping iced tea on a sunny deck someplace.
They hadn't counted on ALS.
Always athletic, about five years ago Bert noticed his tennis game was off. It was the first sign of ALS. It wasn't long before the diagnosis was confirmed.
It was devastating, but you refocus your picture of the future, make new plans, Robin says.
Bert had the choice to let the disease take its course and quickly die of respiratory failure, or prolong his life indefinitely through the use of a ventilator, which makes it possible for him to live a normal lifespan.
"Bert loved life and made the decision hoping that there would be a way to lessen the symptoms of ALS," Robin said. The entire family supported his decision.
Retired attorney and former civil-rights worker Richard Swanson, 64, saw Robin's ad, sent her an e-mail out of curiosity and then discovered that he, Robin and Bert all went to Roosevelt High School at the same time — although none of them knew each other.
Swanson, who has a fondness for conversation, knew then that he had to come for a visit. He brought with him stories of teaching in the Freedom Schools in the segregated Mississippi of the 1960s and registering blacks to vote. A number of times he was threatened — once by an overweight state patrolman who menacingly called him a name.
"That's no worse than being obese," Swanson retorted. But he quickly realized by the officer's puzzled look that he had no idea what the word "obese" meant.
"You saying something about me?" the officer asked.
Memories sustain her
Robin's home office is just off the living room so she can be near Bert during the day. She works part time as a management consultant to help pay for the 24-hour-a-day care, which Benditt estimates at $150,000 annually for any ALS patient on a respirator. The long-term-care insurance Bert purchased several years before his diagnosis helps as well.
At night Robin watches movies with him, providing occasional commentary and trying to gauge his response. She admits there are moments of discouragement when it feels "a lot like widowhood."
The rewards for her devotion may not come in the ways they once did — flowers on their anniversary, dinners at Canlis, long talks and loving glances. Instead, the rewards are in the richness of her memories.
"This would be really hard if we hadn't had a good life together," she says.
She knows he's there when his eyes lock onto hers. At night she kisses him and goes up to what for their entire marriage was their bedroom, an old-fashioned room with a slanting ceiling and a view of Puget Sound.
"His clothes are still in the dresser drawer," she says. "I haven't had the heart to take them out."
"He's locked in"
With his well-modulated voice, broadcaster Dave Elvin reads the latest news of the radio industry from broadcast Web sites. He speaks of acquisitions and mergers and tells Bert that the top-rated stations in the Seattle market are Christian and country.
When Bert doesn't respond or meet his eyes, Elvin asks Robin if Bert can understand.
"Oh, yes," she explains. "He's locked in so it's hard to tell."
Elvin, 41, is part of a Kirkland group that has met monthly for many years just for the purpose of conversation. He responded to the ad, thinking of suggesting the group meet one month at the Brumett home. Conversations at the meetings can be about any topic, from politics to sports.
It's the kind of group Bert would have gravitated to in his healthier days, Robin says.
At night, she awakes to an irregular sound from Bert's ventilator, a beep of equipment, indicating his airway needs suctioning. All his bodily functions are handled mechanically and even though there is a caregiver at night, she is so tuned in to Bert's needs, she awakens easily.
When she checks on him in the dim light of the room where they once entertained friends and raised children, she wishes she could slip into the narrow hospital bed beside him and hold him. Even more, she wants a miracle: to hear the voice that charmed her once again.
Nancy Bartley: 206-464-8522 or firstname.lastname@example.org
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