6. Why I started running despite my rare lung disease

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.

4 thoughts on “6. Why I started running despite my rare lung disease

Add yours

  1. Hi Nisha,

    Thank you so much for your beautiful LAM narrative! I’m also an introvert, and I so appreciate your willingness to share your vulnerability. I’m 51 and have had LAM for 30 years now. I live in Asheville, NC and just started going to the Emory clinic. If you’re interested, I would love to get together next time my husband and I are in Atlanta.

    Here are a couple of videos about me and LAM you might find interesting. The first one was made by my daughter, Kate, when she was 15. The second is of a recent talk I gave at an Integrative Medicine series about how I collaborate with my health.

    1. Creating a New Normal

    2. Collaboration Between Me and My Health

    with love,

    Maureen McCarthy


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