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Why I Started Running Despite My Rare Lung Disease

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One of the symptoms of lymphangioleiomyomatosis (LAM), my rare lung disease, is shortness of breath. I discovered just how short of breath I can get when I started walking with my neighbor in the morning. Turns out I could handle the walking just fine, but add a conversation to it, and I sounded like a freight train. Frankly, it was embarrassing and uncomfortable, so I avoided it.

Months later, a friend invited me to walk the Atlanta Beltline, a paved pathway in the heart of the city with a beautiful cityscape view. I enjoyed the company and the view so much that I didn’t realize I had huffed and puffed my way through a 4-mile walk. So, I went back by myself the next day, and the day after that. Over the next couple of weeks, I started noticing all the runners that would pass me as I walked. Pretty soon, I felt bold enough to give it a try myself, despite being short of breath.

I probably ran a 1/4 mile that first time on the Beltline before I stopped. If the walk and talk combo had me sounding like a freight train, then the running was more like a turbo jet engine. Holy tornado! Could everyone hear me? Why did I think I could run like everyone else here? Could everyone see me hunched over, gasping for air when I barely ran? I felt so incredibly inadequate and ashamed. Needless to say, I walked the rest of the way. During that walk of shame back home, anxiety gave way to tears, and the sound of my breathing felt amplified. I couldn’t get home fast enough.

Hearing myself breathe heavily was a painful reminder of LAM, and all the feelings of helplessness and uncertainty about a future living with a progressive and incurable disease that go along with it. Then, something unexpected happened when I got home. I felt a little lighter. That hour and a half long, 4-mile stretch, gave me a chance to think about life after my diagnosis, and opened up this frequency in my mind that I hadn’t tuned into before. I thought about how isolating it is to have a rare disease no one knows about, and how angry I am at the universe. I thought about how the uncertainty of it all just makes me freeze some days, and how every little ache or pain frightens me because it feels like another lung collapse.

I also thought about how fortunate I am to be able to walk four miles on a trail nearby with incredible views of the city, and that I have great health insurance to cover my quarterly visits to the LAM clinic at Emory Hospital, which is only 10 minutes away. I remembered that I have an incredibly supportive and loving husband, and two wonderful children, and that I wasn’t diagnosed before having kids because the decision to have kids knowing that pregnancy causes progression in LAM would have been too much to bear.

I woke up the next day and felt this need to go out and walk again. This time though, I went prepared with an arm band carrying my iPhone and headphones so I didn’t have to hear myself breathe. My walks eventually led to running, very slowly I should add, and over a few months, I built up to running four miles, several times a week. Those months of running brought me such a sense of clarity in my life, and it’s because I finally gave honest expression to the full spectrum of my feelings about living with a rare lung disease.

I still run on occasion and often sound like a turbo jet engine, gasp for air and am deeply uncomfortable at times. I keep going because in the face of a disease that’s progressive, I’ve come to terms that my days of running may be numbered.  With all the thoughts I have yet to deconstruct in my mind, I’m going to run while I can.

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Getty Images photo via lzf

Originally published: January 29, 2018
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