We have all heard the quintessential story of how a “normal” life is expected to unfold. We are born carefree and remain happy during childhood, become awkward and curious in our teens, explorative through our 20s, confident and steadfast into our 30s and 40s, continuing to grow older and wiser as we seek out the unknown and explore the world. We generally take life as it comes, knowing we may be primed to leave this earth from natural causes, an illness later in life, or any number of reasons -- and eventually we leave the living up to those we've met and loved along the way.
What if instead we were told that we would live our lives in reverse? That is what living with cystic fibrosis has been like.
I was lucky enough to have a carefree and happy childhood. However, the story changed in my teens. Prioritization of my heath became an everyday reality. As a 28-year-old, I have been through well over 40 two-week hospitalizations since my teens. I have spent at least an hour each day taking medications and completing my breathing treatments. From an early age, I became responsible for maintaining my health and didn't have the luxury of taking days off, despite having days when I have felt so sick that simply showering was a difficult task. Even with my daily commitment to my lifelong health and treatment, a lung function test I took at age 23 showed that my predicted age based on my lung function was 84 years old. In other words, I was a young adult with the lungs of an elderly person. That didn't quite fit the path that my friends were on.
I have essentially lived my life in reverse. I started my story in an unhealthy body and have worked hard during my teens and 20s to try and keep up with my friends and family who have lived their lives on opposite timelines.
I have always been up for the fight to keep going, but the fight always came with consequences: missing time with family and friends, skipping out on events and travel, and living an overall careful, and sometimes timid, life to keep my sickness at bay. Then, everything changed for me.
On Dec. 8, I swallowed two small orange Trikafta pills. Although the drug was described as a “game-changer” and a “transformative medication,” I made sure to keep my expectations realistic. After only a few days on the new drug, my airways began to clear, the bags under my eyes began to vanish, and I started to feel a brand-new definition of healthy. I couldn't believe it. Now, here I am six months later, and I have not had a single CF exacerbation. I wake up with energy, I laugh without coughing, I can speak my mind without having to constantly clear my throat; but more than anything else, I've gained so much energy to live the day-to-day with intention and purpose.
Throughout my entire life people have called me brave and positive, but I don't think people fully understand that the fire to fight is in all of us. Most of us just aren't required to channel that fight at a young age.
If you were standing at the beginning of an obstacle course and knew you wouldn't be able to see your family and friends, explore the world, or accomplish your goals unless you climbed walls and jumped over hurdles, would you do it? Cystic fibrosis just happens to be my obstacle course, and Trikafta continues to break down the walls and hurdles I've fought through for the last 28 years.
I will never fully be able to describe what it is like to see the world through CF eyes and then have the fog be lifted, but I do know one thing: I am incredibly grateful. I am grateful for everything cystic fibrosis has taught me to this point and grateful to live out the last two years of my 20s with an explorative spirit and a healthy body to match.
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