One of the symptoms of 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 afnd 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 that 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, uncertainty, grief, and isolation that go along with it.
And 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 things 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, and how the uncertainty of it all just paralyzes me 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 4 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, which is only 10 minutes away, and 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 that 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 4 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.