Loa Griesbach’s days revolve around family, work, adventure, fashion, blogging — and her ventilator.
Loa Griesbach has an insane collection of designer boots and spike heels.
All are in mint condition.
No scuffs, no worn tread.
As she shares in her blog: “These boots were NOT made for walking.”
Griesbach, who works at Ventec Life Systems in Bothell, is quadriplegic from a spinal cord injury she received in 2002.
But that doesn’t mean she can’t love shoes — and life.
Griesbach, 35, has spent nearly 18 years with around-the-clock caregivers who monitor her every breath and sip of hot tea. She was a talented artist and a ballerina who wanted to be a doctor. Since the crash, she can’t move or feel her feet or hands.
She is paralyzed and depends on a ventilator.
A machine provides air into her lungs through a tube in her throat. She gingerly turns her head so her lips can accept the straw from the nurse by her side. The nurse brushes back a strand of her long brown hair that falls forward when she tilts her head.
Her voice is crisp and engaging despite a slight rasp.
She is fragile and confined, yet she finds a reason to smile in a way that puts others at ease. She jokes about her shoe fetish.
She can feel pain and other sensations below the neck.
“My sense of internal organs is completely normal and I can feel a lot of things deep in my muscular tissue in my lower extremities.”
Physically, nearly every little detail of Griesbach’s life is in the hands of someone else. Her survival hangs in an array of cords, tubes and durable medical equipment.
The pressure of the air delivered by the ventilator is a muted rhythmic whoosh that over time becomes background noise. Strangers try not to stare at the hose in her neck. Parents shush their kids.
Griesbach was 18 and a straight-A student with a full scholarship to college when her life changed in an instant.
It happened during a family trip in California her senior year. She was driving a Chevy Suburban when it rolled over. Her spinal cord was crushed.
Passengers included her mom, Bonny, and her sisters, Helga and Soley, then 13 and 15, as well as two cousins and a family friend.
“I thought, ‘I just killed my family,’ ” she said, her voice lowering.
The others recovered from lesser, though serious, injuries.
Today, Griesbach lives with her parents and has constant company from members of her caregiving team, which includes family, friends and doctors, along with physical, massage and respiratory therapists. There’s an extra bed in her room for whomever is on night duty to tuck her in for positioning and maintaining her airway.
“I need someone to help me eat … to help me take a bath, help brush my hair,” she said. “I need a lot of help.”
She can’t do hundreds of things that most people take for granted.
Griesbach focuses on what she can do.
She has a job.
She chooses what to wear. On this day, leather riding boots, white sweater and the pink scarf that matches her perfectly painted nails.
She controls her wheelchair using her mouth.
She has degrees in history and physiology from Seattle Pacific University.
She travels: Mexico, Hawaii and her mother’s homeland of Iceland twice.
“The fortitude of my ancestors made me contemplate whether centuries-old Viking qualities are what allow me to endure life’s challenges,” she wrote in a blog. “Survival required resilience and resourcefulness, both traits I have found to be valuable assets in coping with my injury … The Vikings have a reputation for being fierce, savage, exacting, and cut-throat warriors. These qualities were necessary to survive the extreme conditions that are Iceland.”
The conditions that are her life are also extreme, but nothing this Viking can’t endure.
“If there’s something I want to do I’ll figure out a way,” she said.
‘Just a girl’
Griesbach is used to the accolades of how brave and remarkable she is, and other nice things said by people who can walk and talk and breathe on their own and can’t imagine life otherwise.
They see her and secretly wonder how she copes, let alone thrives.
It helps to have dedicated parents, two attentive sisters and three young nephews who adore her.
Following the crash, she was in the hospital and rehab for more than four months.
She fractured her C5 and C6 vertebrae; she had a large cut on her skull. She flatlined once.
Classmates and the local community raised money to help build a wing onto the Everett home. A contractor did the outside. Her Viking uncles and her dad, Nick, did the rest, creating an accessible bedroom for her as well as modifying shared spaces, such as the kitchen, so she could live at home despite her many needs.
She graduated with her Henry M. Jackson High School class and spoke at commencement. She enrolled at Seattle Pacific in the fall. Her sister Helga, who has Down syndrome, assisted in her studies by turning pages for her in textbooks.
Adapting to her new life was trying — in body, mind and soul.
“I was scared of what my future would be like,” she said. “It’s difficult to accept the reality that you’re dependent on a machine to keep you alive … You just do what you need to do. You don’t have any choice unless you just roll over and die and I wasn’t going to do that.”
Imagine being in that situation.
Sure, Christopher Reeve was … but he was Superman.
The actor was paralyzed in 1995 following a horse-riding accident. He started the Christopher Reeve Paralysis Foundation that raised millions for research. He died in 2004 at age 52.
“I’m just a girl,” Griesbach said.
And, yet, she too is making a difference.
Member of the team
A ventilator is this girl’s best friend.
The machine is a lifeline to talking, breathing and some level of independence.
She uses a VOCSN, an acronym for ventilator, oxygen concentrator, cough assist, suction and nebulizer, made by Ventec Life Systems, a Bothell-based company that employs 105.
The VOCSN combines five pieces of respiratory equipment. It was approved by the Food and Drug Administration in 2017 for people with neuromuscular disease, impaired lung function, spinal cord injury and pediatric development complications.
The relatively compact device slimmed down 55 pounds of equipment to 18 pounds, Ventec spokesman Chris Brooks said.
Griesbach’s mom sometimes would use a baby stroller to carry her medical equipment. Her previous ventilator was bulky and noisy, but it fit like a trusty old shoe.
When the device was being phased out, she tried other ventilators.
“They disrupted my cognitive ability and I felt physically unwell while breathing on them,” Griesbach said. “I was really scared of what my future would be like without a ventilator that could comfortably support me.”
After the VOCSN was cleared for trials, her physician at the University of Washington Medical Center recommended she try it.
Griesbach was skeptical. That lasted mere moments.
“They hooked me up and I got a breath or two and I go, ‘Oh, wow, you guys did a really good job.’”
She is able to customize the device to make her speech more fluid. In a restaurant, for instance, a setting increases pressure that projects her voice. It’s her “chatty” mode.
She had suggestions in practical matters, such as a night mode to dim the LED screen and a lock function.
Then there was the matter of that blue hose. “I wanted it to be offered in a variety of colors,” to give people a choice, she said.
Ventec officials saw Griesbach as more than a customer. They liked her insight and hired her.
At Ventec’s 34,000-square foot manufacturing facility in a Bothell business park, the devices are made by a highly skilled workforce that tests — and retests — every screw.
Griesbach advocates for patients and advises engineers. Her degree in physiology helps. She brings both an academic and consumer perspective to the table.
“She’s in the office, providing feedback, talking through improvements,” Brooks said. “We call her Madam Ambassador.”
On her desk are photos of her nephews and a candy jar.
“I didn’t really know how I was going to find purpose and feel valuable and a contributing member of society,” she said. “I went to school. It made me feel like I was doing something and engaging, but it didn’t make me feel like I was giving anything back to the world. I never thought I could do something so meaningful.”
Griesbach recently attended a national respiratory care conference with other Ventec colleagues in New Orleans.
“Rarely do you ever see someone who is on a ventilator at that conference,” Brooks said.
A blog is born
Brooks was impressed with how Griesbach inspired those around her. There were thousands of people on ventilators that she could reach virtually.
“If you are recently diagnosed with ALS or in a car accident and you wake up and you’re on a ventilator and you Google ‘life on a ventilator’ you get a very negative result,” Brooks said. “Loa is an inspiration. She has a more active social life than I do.”
He suggested she write a blog on Ventec’s homepage.
“I didn’t know what I would write about. How many articles can you write about how you used your ventilator today?” Griesbach said. “Chris said, ‘Write about your shoes.’”
She uses dictation software or she dictates to her caregiver.
She writes how her cousin in Iceland thought it would be fun to take her off-roading.
“They packed me into his Range Rover with a bunch of pillows and we hit the road … The exhilaration of trying something new and different was enhanced by the 360-degree view of Reykjavikík, Mount Esja, and all the water snaking in between on a gorgeous sunny day.”
She tells of her struggles:
“Sometimes it really does just suck! There are days and moments when I get overwhelmed by the fact that it is neither ideal, nor easy to live with the hand that I was dealt. While I typically keep these moments of struggle to myself, I think it is important to let those feelings out so that they do not consume me or lead me in a downward spiral.”
Then there’s the matter of shoes:
“In addition to needing different shoes to go with different types of outfits, dressy, casual etc., a variety of shoes can change the look of a single outfit to give it multiple different feels … It helps me look and feel cute,” she wrote.
“… Since I do not allow being in a wheelchair and on a ventilator to interfere with my love of fashion, I campaigned for VOCSN to offer neutral circuit colors. This has been the source of much friendly banter and teasing around the Ventec office, where my colleagues have the false impression that I am biased against blue. For the record, blue draws the eye too strongly and people may be inclined to look at my circuit instead of my feet. And this will not do! I love all colors, including blue, but I cannot have competition drawing attention away from my fabulous shoes.”
‘Whatever Loa wants’
Loa Griesbach’s fashion commitment was strong before the crash. So, too, was her drive.
In high school her friends altered the song “Whatever Lola Wants” to “Whatever Loa Wants.” The 1955 song for the musical “Damn Yankees” has been revamped for TV shows and commercials.
“They started singing that whenever they saw me in the hallway,” she said.
After the crash, a friend made a big “Whatever Loa wants” poster for her hospital room.
“That became a motto with my family in taking care of me,” she said.
Actually, in the Griesbach home, everyone seems to take care of each other.
Her nephews Wickliffe, 7, Nicholas, 5, and Porter, 2, are often at the house. They like to hitch rides on her wheelchair. She visits their schools and takes them out one-on-one for special days. Her sister, Soley, is the mother of the boys and a nurse.
Helga still turns pages for Loa. “She is a huge helper in my care,” Griesbach said.
They are all good sports about watching her favorite movie, “The Princess Bride,” over and over.
“I grew up on it. It makes me laugh and smile. I can quote almost the entire thing,” Griesbach said.
An upcoming blog is about her favorite quote: “Life is pain, Highness. Anyone who says otherwise is selling something.”
Griesbach goes everywhere — parks, malls, movies, cafes. Wherever Loa wants.
“I love it when kids ask questions,” she said. “That’s the best way for them to learn.”
In her blog, she explains: “It is not always easy for people to physically interact with me in the same way that they do with others. I just sit there. People are not quite sure how to shake my hand or give a casual hug that they would to somebody who is not paralyzed. I admit it: sometimes the lack of tactile interactions makes me feel isolated … When you come across someone who is disabled, even if it may be slightly different than how you usually do it, interact with them as you would anyone. You can shake their hand just by resting your hand on theirs.”
Vacations involve packing machines and equipment, then rearranging hotel rooms to navigate the medical gear she requires.
“We have to hang the water bag. Take the pictures off the wall. Move the furniture. Then I leave notes for housekeeping — ‘Do not touch,’” her mom Bonny said.
In February, the family is heading to Hawaii. It was 18 years ago — half of Loa’s life — when she was injured. They are grateful she survived and that is reason to celebrate.
In the Icelandic language, Lóa is the name of a bird, the European golden plover.
“Birds are often considered to be graceful musical creatures,” she writes in her blog. “As a ballet dancer, I at least aspired to this grace. As one with an aviary namesake ought, I spent the first eighteen years of my life fluttering, flitting, and floating about.”
In her dreams, she is walking. “Since my injury I have only had a handful in which I am in a wheelchair.”
Christopher Reeve wanted to walk again. Sure, she’d like to.
“I’m not living my life waiting for that to happen … I am not going to wait to do anything,” she said.
Andrea Brown: firstname.lastname@example.org; 425-339-3443. Twitter: @reporterbrown.
To read Loa Griesbach’s blog, go to www.venteclife.com/blog.
By Andrea Brown / Everett Herald