I was diagnosed at 2 years old with cystic fibrosis. My pediatrician initially thought I had asthma when I was having shortness of breath and wheezing with heavy exercise. My great grandma ultimately would end up diagnosing me. She did some research, came across something called cystic fibrosis, and concluded that I was a seemingly textbook case. My pediatrician agreed to refer me to Children’s Hospital of Michigan in Detroit for a sweat test, and those results came back positive. My mom was 18 years old at the time and when she asked the doctor what a CF diagnosis meant, my pediatrician told her that I would not live a full life.

I remember the night I realized that CF was going to limit my life expectancy. I was 10 years old. No one had ever told me before that I was in a race against time — how do you tell a child that the disease they’ve lived with their whole life will eventually kill them? I only knew that I was different — not terminal. I had to take enzymes every time I ate, and I hated when my friends asked me why I was taking so many pills. I hated doing my breathing treatments and vest therapy because I had to do it when no one else did. 

So I googled my question that night, and I cried myself to sleep after finding the answer. For someone who lived in their head as often as I did and dreamed of the future, it was devastating that I would probably never experience the things I dreamed of doing, of becoming, of experiencing. I made a decision in that moment to live — and the journey was going to be spectacular. At the end — if it’s true that your life flashes before your eyes — I wanted to watch it back and laugh at all the crazy things I did for a good story to tell.

My teenage years were hard and often very dark for me. Typical teenagers are moody and the things that seem very little to us now were very big problems then. Throwing in the fact that I was sick didn’t help the experience. I was the kid who coughed during tests in school when the room was silent, and I’d suffocate trying not to because I was embarrassed. I missed tons of school days, including 86 days my senior year alone. I slept for up to 16 hours a day. I was severely underweight for my height. I was hospitalized for almost two months during my junior year. But … I didn’t know any different.

When I was 19, my entire life changed when I was prescribed Trikafta. Within only a few weeks, I felt normal. I felt new. I slept for eight hours at night and felt more rested than I had in my entire life. I didn’t cough anymore. I could laugh without suffering for the first time. I could run, which I had never been able to do before. More importantly, I could finally breathe easily and experience the normalcy that I craved my entire life. 

I figured, since my health had changed so drastically, I might as well further my education and choose a career. I searched for associate degree programs, and that’s when I found respiratory therapy. I had no idea at the time that a respiratory therapist (RT) took care of me all those times in the hospital — that an RT gave me every breathing treatment and performed every PFT I had ever done. I also learned that a respiratory therapist’s role in the hospital was a lot larger than I had initially expected. They work in every area of the hospital from the neonatal intensive care unit to the emergency room and everywhere in between. From that moment on, I was determined to become a respiratory therapist.

The next three years of my life were the hardest I’ve ever endured. Throughout the RT program, I went through many personal struggles, including respiratory illnesses, the mental turmoil that came with constantly being too hard on myself because I wanted to provide the best care to my patients, splitting up with my daughter’s father, having my daughter diagnosed with level three autism, and working full-time as a respiratory intern while I was still in school. I even lost my great grandma, the one who diagnosed me all those years ago, on the day of one of my final exams, just an hour prior to the scheduled test. I pushed through a lot of pain to be an RT because I truly believed I was meant to be one.

The eeriest thing about being a respiratory therapist as a person with CF was realizing how rare it was to do what I was doing. I would read about the  demise of people with CF in PowerPoint presentations and in the back of our textbooks. I would hear older RTs who had been in the field for decades tell stories about kids like me passing away in their teens and how sad it was. It was also very amazing to me that God — or the universe, or whatever you believe in — made me know sickness and suffering that most people will never experience until the end of their lifetime — and then took it all away and gave me the gift to finally breathe easy. All so that I could help others do the same.

CF has brought me such compassion and empathy for the many people I encounter every day. I will never forget the first life I lost, and I will never forget the first life I took part in saving. I will never forget the tears I cried over people I never even knew. I will never be able to erase the eyes I’ve looked into that were completely overtaken by fear because they couldn’t breathe — because I know how hopeless and scary that feeling really is. I will never forget holding the very first vest I ever wore as a child at a respiratory conference where I spoke to representatives from a vest manufacturer and told them I was familiar with their product because I had one. I could never do anything else. I wouldn’t want to.

I used to hate having CF. Now I realize that I wouldn’t be me without it. I wouldn’t have the drive, determination, and passion for what I do.

I wouldn’t have the undying empathy for the people I take care of every day. I wouldn’t have been able to hold my patients while they sobbed in my arms over a terminal diagnosis because I felt their pain and knew the same fear that they were experiencing. I needed to know the struggle so that I could make the impact I was meant to make, to bring the comfort I was meant to bring, and ultimately be the best human I can be by the end of this journey. CF wasn’t a death sentence for me, it was the drive to truly, authentically, passionately, and fully live. The pediatrician who diagnosed me was wrong — I’ve lived every moment to the fullest, and fearlessly, without taking a single breath for granted. I hope that you do too.

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