You can learn a lot about Karen Skålvoll from the way she closes every email.
She signs off with “In love and strength.”
Skålvoll certainly has earned the right to the word “strength.” She’s nearing 50 and can dead lift 308 pounds (140 kilograms). In competition, she heaves “Atlas stones,” which live up to their mythological name. And oh yes, she recently pulled a plane.
“What I do should be impossible to do,” Skålvoll said.
Despite a rare lung disease called alpha-1 antitrypsin deficiency, she has racked up accomplishment after accomplishment in competitions that test her strength and endurance. But Skålvoll has been an athlete ever since she was a child in Norway. Swimming, running, cycling – she did it all, although often with some kind of lung trouble. Doctors told her to train a little harder. Maybe lose some weight. To some, she might have looked lazy, lagging behind the pack.
“I know what it feels like when you’re always the last up that hill,” Skålvoll said during a recent visit to the United States.
The Journey to a Diagnosis
But she wasn’t lazy; she was undiagnosed. Alpha-1 antitrypsin deficiency tends to worsen as a person ages and her biggest scare came in 2009 while training for the New York City Marathon. So much else was going right for her then. Her son was grown and doing well. She was using her biology degree to teach science to special needs students in Oslo, a big city with much to offer.
“One day I was training for a marathon and the next day I’m gasping for air in the ICU,” Skålvoll said.
She had previously been diagnosed with asthma, but that did not explain all her health problems. Skålvoll’s recovery from intensive care was long and slow. Afterward, she was in and out of the hospital, despite tailoring her life to avoid illness and moving to a rural area for cleaner air. It would be two more years before a doctor in Germany, where she now lives, said her condition was simply not normal and insisted on further investigation. He suspected she might have Alpha-1 and tested her for the illness, a simple blood test.
He was right. Skålvoll remembers when he broke the news that she had Alpha-1, which is sometimes called “genetic COPD” (chronic obstructive pulmonary disease).
“The moment he said that, my life just tore apart.”
Of course, there were tears and sadness. Alpha-1 antitrypsin deficiency, an inherited, genetic disease, means the person is missing an important blood protein called alpha-1 antitrypsin. This blood protein protects the lungs from inflammation and infection.
Even now, seven years later, Skålvoll says it can be difficult to confront the daily reality of her illness. Without enough alpha-1 antitrypsin, people experience wheezing, shortness of breath, frequent colds and sometimes other symptoms, including liver problems, which is where the protein is produced.
“I’ll never be fast again. I’ll never run like the wind,” Skålvoll said.
But she could - and did - get strong. Like, really strong. Once she was in treatment for Alpha-1, she said it felt like “someone turned a light on in my body.” Her health improved and she found a passion for strength training.
The achievements started stacking up.
- She’s the first adaptive athlete to finish an 8+ mile obstacle course called a Spartan Super. She also finished a Spartan Beast, which is even longer at 12+ miles and with more than 30 obstacles.
- Skålvoll was named standing female winner in the 2017 Britain’s Strongest Disabled Man competition.
- In 2016, she came in second in the world championship for strongest female adaptive athlete.
Her iron will attracted sponsorships from biotechnology leader CSL Behring and others. The photos she shares on her Instagram account, alpha_1_athlete, show how grueling it is to compete at this level. If you think she’s a little crazy, don’t worry. She questions herself when she’s exhausted, in pain, and trying to go a little farther, to lift a little more, even as her body would much rather crawl under a blanket and take a nap.
“I will question my own sanity,” she said. “Because I was an athlete, I can push things to an extreme.”
But training as an elite athlete gives Skålvoll something that’s hard to come by for a rare disease patient: the feeling that she’s in control of her body.
In Love and Strength
Here’s where the love comes in. Skålvoll has a support network that stretches far and wide. She draws upon her husband Torbjørn’s ever-present support and the close relationship she has with her adult son, Richard. They plan to accompany her in summer 2019 when she attempts a seven-day trek through the mountains of Norway, walking about 20 kilometers (10+ miles) each day.
Skålvoll’s friends in the strength-training community, including legendary strongman Magnus ver Magnusson, help her power through tough hours of training and competition. More friends are there when the work is done and it’s time to recover and take “life in the slow lane” for a while.
While it’s no fun being the sick one, Skålvoll says she’s happy so many friendships have endured. When a neighbor brings her soup, she gratefully accepts it. When an old pal from her high school years asks her to visit the United States, she goes.
“Because of these friends, I have a very rich life. They teach me something. I teach them something,” Skålvoll said.
She’s also trying to use her second chance for the good of others. Skålvoll befriended an 11-year-old patient diagnosed with COPD due to an unknown cause. He was struggling with not being able to keep up with his friends on the football (soccer) team. Now, the boy and his whole family have turned to strength training as a fitness activity.
Wanting to be a role model, Skålvoll worked with the World Anti-Doping Agency to get approval for the use of oxygen therapy during competition. She also wants to see the Paralympics include lung disease patients as eligible competitors. No one should be left out, not today, and not tomorrow when the next generation of disabled athletes comes along, she said.
Skålvoll advocates, not just for other Alpha-1 patients, but for all patients who have lung diseases. She’ll be leading a “Celebrate Life” tour next year, visiting Norway, Denmark, Germany, Sweden and the United Kingdom, to encourage lung disease patients to start working out at local gyms. Patients must check with their doctors first, but exercise is generally encouraged for people who are managing Alpha-1.
Gyms can be intimidating and Skålvoll wants to break down those barriers. Though she’s not trying to turn everybody into a powerlifter or marathon runner.
“I want everyone to move a little bit more,” Skålvoll said. “Do 1,000 steps today, do 1,001 steps tomorrow.”