A Life of Numbers
According to Pythagoras, the universe is ruled by numbers. I know they definitely rule mine; the hours in a day, the number of essays to grade, appointments, bills, birthdays, the list is endless. The overwhelming sense of managing and delicately balancing life’s numbers, can be, well, overwhelming. However, my son, Alex, must feel like living his life with cystic fibrosis is somewhat of a balancing act as well; as if his life is completely managed by an endless series of numbers. Certainly in this modern world, the statistics of living with this complicated disease would have even the finest of mathematicians swirling to calculate its sum total.
The numbers of Alex’s (CF) life began in 1995, with my nagging memory of a nurse handing him to me saying, “Oh, don’t worry we don’t lose babies anymore. He will most likely graduate from High School, he’ll live into his 20’s.” While Alex’s life continued, his numbers grew and changed. They included key numbers, like 6; the hours required for daily IV treatments and therapy. The number 19, the staggering number of hospital admissions and PICC lines he has endured thus far. 92, the amount of days missed in a given school year. 36, the daily count of pills he ingests. 45, the scariest lung function percentage I’ve ever seen. 2 the number of prom nights at which he fought to attend and danced like there was no tomorrow. Yet, through it all, the number 1 remains symbolic. It’s the number of lifetimes my son has, and it’s the lifetimes my husband and I vowed to spend doing everything we could to bring about a cure.
Over the years, Alex grew, alternating between home and hospital, sick and well, but always battling. He learned to swing his bat in t-ball, run the field in soccer, and of course treat the basketball court like the football field I forbid him from. It was in sports though that we found a balance, an equilibrium of numbers, as the statistics of his seasonal sport overshadowed CF. Scoring baskets and RBI’s seemed to calm the CF storm, while his rushing and passing yards in flag football eased the tide of declining numbers elsewhere.
There’s an old saying, “little kids, little problems; big kids, bigger problems”, and in a life with CF, it couldn’t be more true. Alex’s infant and toddler years were that old adage of baby maintenance when the sum total of medications, doctor appointments, and the endless cycle of insurance wars were enough to make us think it was survival at all cost. Yeah, I was “that” mother because I drove through McDonald’s and Burger King more often than most, simply because it offered the high number of fat and calories Alex’s diet required. However, his teen years brought bigger challenges, alarming challenges, such as drug resistance, 5-6 week long hospital stays, and school work we could no longer help with; it all offered a frightening glimpse to his future. Where would my son’s path lead? What numbers would govern his future, and would those numbers be limited?
In Alex’s lifetime, cystic fibrosis hasn’t stopped or even slowed down, instead it’s become stronger, even smarter, but so has CF research . When Alex was diagnosed in 1995, the drug, Pulmozyme, was an infant as well, and TOBI was still only a twinkle in the Foundation’s eye. In fact, the CF gene had only just been discovered a few years earlier. Still, as the science of cystic fibrosis continues, Alex’s life goes on.
Before leaving for his freshman year in college, Alex and I had a heart to heart, mother/son chat during which, Alex told me he wanted to make a difference. While unpacking his dorm room, I found his bucket list, and quite simply, it took my breath away as item #1 was to, “Live a life of meaning.” Little did he know that his life means the world to me.
I don’t know how much Alex thinks about his own mortality. I don’t know what his heart says when he bows his head for those few extra seconds beyond the rest of us at the dinner table, but what I do know is that life goes on and we have the ever evolving science and research to thank for that. The average life expectancy has more than doubled in Alex’s lifetime, but that’s not enough. The drug pipeline has never witnessed so much promise, but even that’s not enough. We’re not done, and every day there’s another mother and father who hear the echo of that nurse from 1995. We have to do everything we can to support this pipeline of therapy so that bucket lists are replaced with ambitious goals, and life’s dreams are more than just a hope for one more tomorrow.
Today, in a life of numbers, Alex’s turned 24, but who knows, because I’m here to be sure, that one day we will celebrate zero, the number of lives claimed by cystic fibrosis. One day, one day soon, CF will stand for Cured Forever, and my son’s life will go on.
Noreen Tarletsky