My older son, Nathan, was 18 years old when he was finally diagnosed with cystic fibrosis. After many years of living and struggling with an unknown ailment, he took the news that he was living with a life-threatening genetic disease with grace. While we both had been waiting a long time to get an answer to what had been plaguing him for almost two decades, I'd been hoping and praying that he'd escape the CF sentence. But, unfortunately, this diagnosis did not come as a surprise to either of us. Perhaps because exactly 35 days earlier, my younger son, Caleb, at 14 years old, had also been diagnosed with CF.
Caleb's Story
Somehow, Caleb had also maintained his composure upon receiving the news. He graciously thanked the doctors and office staff in the same way that Nathan would a month later. But his reaction was remarkably more relaxed than his older brother's.
As we drove home, Caleb occupied himself by texting his friends. “Do you want to talk about it, Caleb?” I asked gently. “No Ma,” he replied without looking up from his phone, “I'm talking to my friends right now.”
And as soon as we got into our apartment, Caleb busted out into a rap and dance: “Cystic Fibrosis ain't got nuttin' on me. Cystic Fibrosis ain't got nuttin' on me. Cystic Fibrosis ain't got nuttin' on me …” For the next few months, Caleb took his new diagnosis in stride, although getting him to take his medications consistently was initially difficult. Caleb pushed himself and his body. He rocked CF and he rocked it hard. He participated in basketball, running, weight training, pull-ups, push-ups and sit-ups every day.
By the time the summer rolled around, he looked, and must have felt, indestructible. And as he got better physically, he improved in consistency with his meds. Or maybe it was the other way around. Regardless, mentally, he chose to be in a good place and it showed in his overall health status. Soon, he had off-the-charts lung function to prove it. I remember his doctor showing his readings to other doctors and staff with unrivaled excitement and celebration.
Nathan's Story
Nathan's diagnosis story is different. His brother had already been diagnosed so we already knew what we were dealing with. While Caleb was starting to adjust to life with CF, Nathan was finishing his freshman year at New York University. He had already done the research on his brother's disease: a disease whose symptoms looked all too similar to his own. By the time he sat in the doctor's chair and waited for the results from the blood work, he already knew the life expectancy statistics, the progression of the disease, how you can be fine one day and then suddenly worse the next.
Upon receiving his diagnosis, Nathan expressed those concerns, along with a few others, to the doctor. “What about insurance when I'm not covered under my parent's plan? How will I afford the mounting health care costs?” He knew, even prior to his diagnosis, that his theater degree would not necessarily sustain him financially. He shared those fears as well, and was told that he should consider transferring to the Stern School of Business at NYU.
But to Nathan -- and most people, I imagine -- the thought of giving up his dreams to accommodate the progressive nature of a disease that he didn't ask for was something that he couldn't comprehend.
Nathan spent the following days wondering what this illness meant for his career and his life. He questioned if he would be able to pursue his passions in theater and art when his meds would cost significantly more than the average person's drugs. He thought about whether he would have to settle for an office job that would provide him with health coverage but wouldn't allow him to pursue his dreams.
Like Caleb, Nathan also struggled with adapting to the CF therapy regimen. A year later, he was still inconsistent. But participating in a clinical trial last year prompted a steadiness and routine with his meds that has persisted. Around this time, Caleb also took a serious interest in learning more about CF. While their reactions to the initial diagnosis were very different, they ended up on the same path.
They are both still learning how to live their lives without letting CF take over. Today, they strive to live in the present -- not the past or the future -- because worrying about both is a waste of time.
