Why I'm Walking in the New York Marathon With My Oxygen Concentrator
Someone at my gym was wearing an Under Armour shirt that proclaims: “Losers Walk.” I’m sure this was meant to be motivating. Instead, it is a message of superiority and exclusion. If you can’t run; don’t show up. For those of us who struggle to run, for whatever reason, the message is that we aren’t good enough if we walk, and we shouldn’t bother doing our best. Maybe it should have a subtext, “Just Don’t Do It!”
On November 5th I will be walking the New York marathon. I have a rare lung disease called primary ciliary dyskinesia (PCD). I have only 34 percent lung capacity. Imagine running at the summit of Mt. Everest. Just as climbers rely on oxygen, I will be carrying a portable oxygen concentrator (POC) along with a replacement battery, a total of eight extra pounds. I’ve been training since January, building up my mileage and trying to build up my speed. I’ve been dedicating more than twice as much time as most people who train for a marathon, but my lungs have not been cooperating.
Since I was accepted into the New York marathon, my health has deteriorated. On race day, I will be getting up around 3 a.m. so I can do my 30 minutes of inhaled medications to open and clear out my lungs. After leaving my hotel to catch the 5:15 a.m. bus to the start line, I will be hooking up my IV antibiotics to my peripherally inserted central catheter (PICC) line in my left arm.
People ask me why I am doing this. The simple answer is to raise awareness of PCD and other rare diseases. I’m part of the charity team for the National Organization for Rare Disorders (NORD)‘s Running for Rare team. I want to bring attention to the limitations imposed on people who require oxygen. My mother-in-law literally had her oxygen supply rationed with lethal results. Those of us with rare diseases must fight for treatments which do not have FDA approval. I am taking a stand — a walk — for those of us with rare diseases who will not stay quietly at home.
I would love to have healthy lungs which would make it possible to run. Am I a loser if I start and don’t even finish? Am I a loser if I start and finish and walk the whole thing? According to Under Armour, I am. What about the veterans like Corporal Todd Love? He is a triple amputee, no legs and one arm. He participates in grueling races that make basic training seem like a playground. Is he a loser because he isn’t running? Does Under Armour’s distinction apply to those who are sitting the entire 26.2 miles, the wheelchair division?
There are so many slogans out there that are more encouraging and inclusive. I wish I could follow the Brooks shoe slogan and “Run Happy,” but it is not about being happy. It is about refusing to be the limitations of my disease. It is making a statement that those of us with rare diseases or other limitations will not disappear.
On the day, I will ignore Under Armour’s implication that I am a loser. I will cross that start line and be motivated to “Just Do It,” no matter how I do it.
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Mary Kitlowski is a speaker and advocate for those with lung diseases and rare diseases. She founded Running On Air to raise awareness and raise funds for lung and rare diseases. Running On Air does this by sharing patient stories, posting facts and research, as well as hosting virtual races that raise funds for organizations like the PCD Foundation and the National Organization for Rare Disorders (NORD). Mary is a runner at heart with a rare and progressive lung disease called Primary Ciliary Dyskinesia. With a lung capacity currently at 34%, and requiring supplemental oxygen, these days she walks. She is currently a lung transplant candidate - she has been approved to receive a lung transplant, however she is not listed at this time. She completed her first marathon, the New York Marathon, on November 3, 2019 in 9 hours and 50 minutes. Her husband joined her, carrying her extra portable oxygen concentrator batteries.
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