As a child, I was always sick and no one knew why. Then I was diagnosed with cystic fibrosis after almost dying in the backseat of my mom’s car when I was 2 and a half years old. I was literally turning blue. Already I’m fighting for my life, and we haven’t even completed the first paragraph. But that is and always has been my life — I’ve always had to fight for it.
When I was diagnosed, they handed my mom a pamphlet that pretty much said I wasn’t going to live to the age of 9. Once I turned nine, they said “OK cool, but he won’t live much longer.” And that’s how it was, all the way up until my mid-20s. I kept defying expectations and living my life until I was about 24. That’s when my lung function decline started to catch up with me.
Cystic fibrosis is a progressive disease. Where I had been spending 2-3 weeks in the hospital 4-6 times a year, now I was spending months. By the time I reached 28 years old, my lung function was at 20% and I was hospitalized for two months at a time multiple times per year.
That is when I made the decision to get on the double-lung transplant list. To be on this list, you still have to maintain a healthy weight for the surgery, and my body was working so hard to breathe that I was burning over 2,000 calories a day just sitting in my hospital bed. To keep my weight stable, I reluctantly agreed to a feeding tube. If you don't know what a feeding tube is, it's a small tube — a bit smaller than a small pinkie finger — that they insert up your nose and down your throat in order to feed you overnight while you sleep. The nurses and doctors had to try for about 20 minutes per nostril until the tube finally threaded up the right side. They got the tube in, but with every cough, I could feel it jerk and pull both in my nose and down my throat — and I coughed ALL the time. I did my best, but I had to have it taken out before I could even get one feeding because it hurt too badly.
My mom was there for all this. She held me in her arms, a 28-year-old adult, as I cried and looked up at her and said for the first time, “Mom, I don’t think I can do this anymore.”
But I kept going. Eventually, I received a transplant at Vanderbilt. Now, I box; I sing karaoke; I play kickball; I’ve even traveled to six countries. All things I never could have done before. I could not have gotten here without the support of my family, CF doctors, and a life spent practicing what I have dubbed “mindful positivity.”
It is so important to have support. No one can go through something this challenging alone. In my case, I was lucky to have the full support of my family, especially my mother, but support can also come from a friend, a therapist, a teacher — anyone who listens, sits with you, and validates your feelings.
My family's support and love kept me going on some of my worst days, and it was my mom who taught me “You can have a wrecked car and be happy, or you can have a wrecked car and be sad, either way you still have a wrecked car.”
That doesn’t mean “be positive and happy no matter what.” I myself had to learn the hard way that you can’t always be happy. You must allow yourself to feel the sadness too. In my life, I have been humbled by friends who have said “You go through so much and you still smile. You are such an inspiration.” I thought that meant I could never be sad or show weakness. I had to be Superman. But some things in life are too difficult to brush to the side with a smile, and inevitably all that weight on my shoulders crushed me.
That’s how I learned it’s OK to not be OK sometimes. This is why we have emotions other than joy.
If you wreck your car, it’s sad. If you have bad lungs, it’s REALLY sad. But when you spend time sitting with that sadness, you come to understand it’s simply a part of you, an emotion just like joy or love. It empowers you to embrace your whole self, lungs and sadness and all, because it's simply a part of you and your story. I am who I am today because of the struggle and the pain that I have gone through, not in spite of it.
You won’t cure CF by “thinking positively,” but you CANNOT fight the physical battle if you’ve already lost the mental one, because it all starts in the mind. You have to put in the mental work before the physical work can begin. And trust me, it is work. It takes continuous, daily practice.
When I had my double-lung transplant, I didn’t lie to myself about the challenges. I knew it would be a struggle, but I made a promise that no matter how hard it got, I would push myself further than I ever had before, and I would not give up. My mind fought with my body every single day. Some days I lost, some days I won, and some days I cried — but I made sure to smile even more, and I never imagined giving up.
Now I am 35 years old, six years post- transplant, and my lung function has dropped by less than 10% since receiving my new lungs. I lead a happier, more fulfilling life than I could have dreamed of.
CF or not, whatever it is that you are struggling with, remember that you can fight and be happy or fight and be sad, but still, you have to fight to survive.
So feel the sadness, own the pain, use it to push you to grow. But when you fight, remember to win the battle in your mind first, and fight with a smile on your face (at least some of the time).
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