I never could breathe after a bout of killer influenza as a toddler. But my husband encouraged me to climb to the top of a Mayan temple in a Mexican jungle. He walked with me as I huffed and puffed my way along the Great Wall of China. And he held my hand when my lung capacity dropped to 19 percent, and we talked to a transplant surgeon. Another man might have despaired. He said, "You make me happy."
When my husband and I first started dating, he said, "You're the prettiest girl I ever dated." He was the kindest man I had ever dated. What other 24-year-old would willingly drop his date off at a restaurant door and then park the car so she didn't have to walk? Or ride bikes slowly, stopping every half mile so I could catch my breath. It never bothered him.
It bothered me. Not being able to breathe has bothered me all my life.
In high school, I was always walking behind the group of friends because I couldn’t keep up. Gym class was torture until a kind teacher got me exempted from it. College? I walked from bench to bench to get to class no matter the weather. And, for the record, western Pennsylvania has a LOT of weather.
There has never been a time when I didn’t have to think about whether I could walk across a room before I did it. Or run a vacuum cleaner, dance with friends, or take my infant upstairs to bed.
Being a parent was possible: being a mom and working was not. I was not able to work out of the home to my full potential. Even as a mom I couldn’t walk with my daughter or swim with her. We have never taken a family bike ride or hike. Then 10 years ago I learned the cause of my breathlessness: bronchiectasis caused by that long ago bout of killer flu and subsequent pneumonias.
Recently we went to a concert. I had to walk from the parking garage to a stadium. On the trek, we discovered to our horror that the path was downhill. Which meant I had to make it up the hill to get to the car to go home. I could feel my husband and daughter’s anxiety throughout what should have been a good time. Will Mom be able to walk back? How will we get her to the car?
They should not have to live with the fear. I should not have to walk with my oxygen in a cart because it is too heavy to carry.
When I feel discouraged, my husband says, "You have a Ph.D. in using oxygen. Other people don't know what it is like. You know what it is like." I do. I also know the doctor prescribed the medicine and the medical supply company dropped it off. But no one told me how to use it or why until I went to pulmonary rehab and the respiratory therapist taught me. I live near a major urban area and have access to a respiratory therapist. Many do not. I have reliable healthcare, family support, advocate for myself and educate myself. It's a lot of work keeping my lungs happy. And I’ve been lucky - pulmonary rehab, specialized education, and improve medication has improved my lung function to 31 percent.
My family has seen my struggle but I must bear it. That’s why I I want to help people who can’t breathe by advocating through the American Lung Association for the passage of the SOAR act and access to oxygen and respiratory therapists.
