In 1975, when I was 18 months old, the doctors sat my parents down in a room and told them the terrible news: Your baby girl has cystic fibrosis. Don’t expect her to live past the age of 13.
Though devastated, Mom and Dad were determined to give me as normal a life as possible. I roller-skated, climbed trees, rode bikes and did all the things a healthy child would do. At the age of 3, I was the poster child for our local CF Foundation (CFF) in North Hampton County, Pa. I got to meet the Philadelphia Eagles and the characters on Sesame Street, and I showed up on posters nationwide sitting on my tricycle, hair in pigtails, proudly sporting a CFF T-shirt.
All this attention, however, started wearing on me as I got older. CF plays games with you. You’ll go a few weeks, even months, thinking, “OK, I’m doing great.” Then you catch a cold and it immediately goes into your lungs and makes you terribly sick. It feels like taking 20 steps back for each five you take forward.
Exercise helps. I swam constantly and loved cheerleading, which helped keep me healthy and also fight stress and depression. But things got tougher in my teens. When you’re trying to juggle school and activities and you’re too sick for any of it, it’s overwhelming. I didn’t want to be a poster child for CF anymore. I didn’t want to have CF anymore.
When I was in ninth grade, I got really sick. I would go into my room and cough so hard I’d end up on the floor, unable to stop. I was finally hospitalized with pneumonia. I was 15 years old—two years past my so-called expiration date. My parents thought that was it, that I was going to die.
Obviously I didn’t. But it’s pretty surreal to live past your expected lifespan. For years, I was kind of lost. I quit college after one year, too sick to continue. I made a series of poor choices. I wasn’t taking care of myself. Sure, I took all my pills (when you have CF you don’t create the enzymes you need to digest food, so you have to take handfuls of pills daily) and did my breathing therapy, but I otherwise didn’t pay much attention to my CF. I’d try to exercise, but every time I went to the gym, I’d get really sick. I’d lie in bed and cry, praying to God not to leave me in this horrible state.
Eventually the doctors realized I had an infection. Once I was treated for that, my life really started turning around. I started working out again. Then a colleague joined Team CF, a bicycling team for people affected by the disease, and started harassing me to sign up, too. So I got a bike, and did 10 miles on my first ride! It cleared my lungs so well it was like doing therapy. I’ve only been riding for a few months, but I can really feel the difference. Finally, I
My most recent milestone was making it to my 20th high school reunion last summer. In high school, the rumor was that I would die before graduation. I refused to miss the chance to show everyone that I’m still going strong. I’m sure they were shocked when I walked into the reunion. Heck, sometimes I’m shocked.
My road is not without some rocks. I still have my setbacks. But mostly, I’m doing well—well enough that the CF foundation in Jacksonville, Fla., where I now live, spoke to me about making a poster of me then (when I was 3) and now, at age 38. When you’re growing up with CF, the one thing you want to see is an adult with the disease—how they look, that they exist. Today, I would be proud to put on my Team CF uniform and have my picture taken. It’s an honor to be the face for CF—again.