Alpha-1 Athlete and the Ultimate Feat of Strength
To be breathless has become all that I know in life. From an early age I have always been the one that has had to train twice as hard as everyone else to get the same results. I was always the sick child, there was always an infection and a dreadful cough to go along with it. Ever since childhood I was active both in sports and in life in general. My early twenties came with a notion that I might have copd, but I read up and decided it was not possible. Later, I would visit many doctors to find out what was wrong with my breathing. They all concluded that it was all in my head and gave me many solutions things like: train more, train less, gain weight, loose weight, move, and find a different job. All good and dandy, but nothing really helped me breathe better. After a couple of years, during which I spent more time in the hospital than at home, I moved with my future husband to Germany. While here I received what I perceived to be the end of the world (at the time); a diagnose called Alpha-1. A genetic condition that can cause lung disease and/or liver disease. The damage to my lungs is due to my liver failing to release a certain protein into the bloodstream, the main job of this protein is to protect the lungs from damage due to the environment and infections. Needless to say I was devastated, rock bottom does not even begin to cover my feelings.
However, there is always a silver lining to every cloud. Mine was that I was diagnosed while I lived in a country that offers treatment to slow the progression of the terminal lung disease. My plasma protein therapy started in May of 2012 and with that, so did my long journey back to life. When I first began the plasma therapy I could not walk the stairs in our house without stopping, I could not walk and talk at the same time even when I was on flat ground, let alone do simple tasks without being completely wiped out. My rehabilitation also brought with it several major surgeries, many of them done on my spine. Day by day, I literary walked one step more per day and slowly, but surely started to hope that there might be better days ahead. In 2015 I started personal training with a man that fired my spirits back up again. A body ridden with cortisone and the effects of it was going to get back to being the athlete I used to be. This was the year I did my first powerlifting competition while under oxygen therapy.
The old circus horse was back in the ring again, and I decided that my mission not only was to give back to the world, but to do so in a way that could pave the road for those that come after me on my path. Not being allowed into parasports, because my disability is not under the paralympic criteria, did not stop me. I have competed at the national level in the non disabled powerlifting liga in Norway, under the IPF, and I am the first athlete to have a WADA certification and approval for the use of oxygen therapy in competition. This was the first of many steps taken to have my type of disability recognized as a paralympic one. I have ventured into disabled strongman, where I was the very first woman in the sport, holding multiple world records and world firsts. The latter ones will be most important, in a little while I will tel you why.
Having the upper hand on my disease I also decided to start OCR (obstacle course racing), another fine sport that was willing to take me just as I am under oxygen therapy and all. I am the first person to hold a Spartan Trifecta while under oxygen therapy, finishing a beast when they said it could not be done. Since the crazy start in 2016 I have several OCR races behind me and pushed another milestone when I became the first athlete under oxygen therapy to finish the OCR WC 3 km course in 2017.
The many firsts I have might go down in history, my world records will also be there, but what is important for me personally is to show people that terminal lung disease itself is not the end of the world – it is a state, a phase – and that life with terminal lung disease can be both long and very rewarding. Of course, I believe my background as an athlete, before I got ill, is the reason why I today can do what I do. That can probably not be duplicated by many, but what I want is for those that come after me to be allowed to have paralympic dreams and know that they can have a full and rewarding life with terminal disease. The life before the terminal phase is going to make the transition to the terminal phase that much better. I will be ready.
There is one of the first in history moments that for me will always be above and beyond everything I ever thought possible. Fighter vs Fighter, the hardest feat of strength ever undertaken by a disabled athlete, let alone a woman and an athlete under oxygen therapy. To prepare for this particular feat, the pulling of a F-16 Fighting Falcon I spent more than a year working towards the goal. As a young girl I wanted to become a F-16 pilot but was much too short. So when the Norwegian Airforce said yes to our crazy request I was beyond thrilled. In January I spent time in Iceland, training with 4 time World’s Strongest Man, Magnús Ver Magnússon, in the legendary Jakabol (Nest of Giants) gym. Just to be under the wings of such a knowledgeable trainer filled me with more thankfulness and pride than I can ever express, that a little sick chick from Norway had such support meant the world to me. In the last few months and weeks before the pull I struggled with debilitating pain, so much pain that most evenings I cried. The closer the date the more worried I became because my training suffered badly from this severe pain. Most days I could barely walk a few meters. Even so, we proceeded and I tried to rest as much as possible. With my team of trainers and the support of my husband I made it up north to the air force base.
Unfortunately on Monday before the pull (that was planned for Wednesday or Thursday) the F-16 we were allowed to access was pulled away for more important duties. I was shattered. With Arnar Már Jónsson, the founder of disabled strongman, and Magnús Ver Magnússon on their way, we all made the decision that we would find a different plane. As it happens, there would be three fighters lined up for me on this particularly cold Wednesday in June. The aviation museum decided to allow us access to three of their fighters, a Mig-15, an F-104 Starfighter, and a Saab F35 Draken.
With increasingly bad weather we had to get the show on the road in a hurry to save me from pulling in the rain. The Russian Mig-15 was a breeze, I could actually run with it! Right there and then I felt like Pippi, so strong and so empowered. I was too fast for the camera crew even. Who would have thought I would ever be fast again. Next up was the Starfighter, one of the coolest aircraft I know. With Norwegian TV2 and our camera crew documenting the moment, I became the first person under oxygen therapy to ever pull two fighter jets! The third plane, the Draken, a beast that had been in storage for quite some time, proved itself to be quite the challenge. After two attempts, more air was filled in the flat tires, it budged a bit, but did not move. Was I disappointed, well yes, but I also know that an operational F-16 is not a problem for me to move. Being the first disabled athlete to pull the jets is something I will remember forever. But more than that I am incredible thankful to be a part of the LegendBorne family, to lead the way for others and beyond that BE THE CHANGE I want to see in the world. By defining my legacy and proving that terminal disease may have parts of my body, but it sure as anything is not who I am.
The thrill of new adventures lay ahead, I know there is more unfinished business for me to do before I resign from the spotlight as the first elite athlete under oxygen therapy. I hope that what I do can impact children who grow up with CF of other serious lung diseases and allow them to dream of something bigger, something today called unreachable, and for them to just go ahead and show the world that impossible reads «I’m possible»! That truly nothing is unreachable for those who give it a go. My life in sports is vastly different from my Olympic dreams as a child. I am the slowest one at races, and my life in general is filled with a purpose much greater than myself. However, my life is both rewarding and fulfilling in so many ways. Because of my terminal disease I meet people I never would have met otherwise, I get to do things I never thought I would ever do, and I live life to the fullest. I am LegendBorne!
by Ambassador Karen