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I am not comfortable peeling back the curtain and letting people see in person what my life is like with cystic fibrosis (CF). I know I write about some aspects of my life with CF, but the audience gets to move on after reading while I must continue…

“You’re such an inspiration!” the customer across from me said. I was standing behind the mosaic counter of the art gallery where I volunteered during my teenage years. Hearing this person call me inspiring made my stomach turn. I’ve always hated being called that. My mom, who is the president…

One of my favorite things about my mom is that she has really good taste in entertainment. I know it might sound shallow, but really, I love it. Growing up as an only child with cystic fibrosis (CF), I sat around watching a lot of television and movies. Because…

By the time I was 25, I had studied abroad three times and traveled Australia alone for eight weeks. I always had wanderlust and a level of independence that allowed for it. When our daughter Claire was born with cystic fibrosis (CF), I didn’t want to lose that part…

Cystic fibrosis (CF) often feels like a foreign friend since I got new lungs five years ago. Before that, CF was my constant companion; I always felt its presence. With aggressive lung disease, I was continually congested, did rigorous breathing treatments, and cleared my mucus-filled lungs 24/7. Other…

I could just smell it. I didn’t want to breathe it in; no one did. The air was as thick as the winter coat I was wearing. The smell stabbed at my skull like a lobotomy. My mom and I got off the boat, and she made sure I pulled…

In fourth grade science, we were learning about the research process, starting with the brainstorming stage. My class was assigned to pick a topic from our textbook and report on it, complete with a short oral presentation. I pitched a project on cystic fibrosis (CF). An often-outspoken classmate piped…

New medicine can be scary, especially for a person with cystic fibrosis (CF), because all medications come with side effects, some predictable and some not. When you couple new meds with an entirely new way to take them, it can be a daunting double-whammy. However, my journey using…

Before cystic fibrosis (CF) entered our lives, my social circle consisted mainly of my elementary and high school friends. I was the last one of our group to have children and the first to have a child with a disability. While I was happy to know my friends were…

When we stop hiding our wounds and instead make our pain a wellspring of compassion for others, we become “wounded healers” — hurt people who help hurt people. That’s what Henri Nouwen described in his book “The Wounded Healer.” My copy’s pages are eroded by countless pen and highlighter…