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. During that time I discovered a ‘runner’s high,’ the feeling of euphoria and exhilaration brought on by prolonged exercise. What? An oxy-free high? Who wouldn’t want to chase this? Seriously though, those months of running brought me such a sense of clarity in my life and I suspect it’s because I finally gave honest expression to the full spectrum of my feelings about LAM, from fear, anxiety, and anger to joy, hope, and gratitude. And that clarity allowed me to begin to adjust to my new reality of living with a rare disease.
A year later, I ran my first half marathon with the support of Project Athena (more on that later). I still sounded like a turbo jet engine, gasped for air and was deeply uncomfortable at times, but with all the thoughts I had yet to deconstruct in my mind, I kept going and eventually just learned to get comfortable in moments of discomfort.