I was born with a genetic disease known as cystic fibrosis (CF). A few hours after I entered the world, doctors told my parents that if they did everything right, I may live to see 14 years old.
CF is a rare, genetic disease that fills my lungs with thick sticky mucus that I can’t cough out easily. It has destroyed my pancreas and requires me to take a minimum of 30 pills every day, just to digest my food. It has caused a rare form of diabetes that I now manage with insulin. In addition, I spend up to 2 hours every day using various nebulizers to open my airways to attempt to help me breathe.
Ever since I was a baby, I have been hospitalized at least twice a year and put on intravenous (IV) therapy. When my veins could no longer support a lifetime of IVs, I underwent surgery to install my port, which is a device that feeds medications up through my jugular and into my heart.
When infections begin, in a matter of mere weeks, I go from dance class to coughing up blood and needing oxygen. I claw my way back through vigorous physical therapy, hours of nebulizing medications, countless pills, and forcing my body to hack out the infection. Any day now, an infection could begin again. And my chances of rebounding diminish due to antibiotic resistance.
Read more about how cystic fibrosis (CF) is diagnosed
I remember as a kid, probably 6 or 7 years old, after my parents would leave the hospital for the night, I would hang out with my nurse friends, sliding up and down the halls on an IV pole and shooting a syringe full of water at them. One night, a new nurse asked me, “what do you want to be when you grow up?”
I laughed at her. “Kids like me don’t grow up. We die like Heather did.”
She glanced at the chart she was holding, realizing I’m a CF patient and I watched her hold back tears. She knew it. Kids like me die like Heather down the hall did a few days earlier.
I remember adults always complaining about getting old, having bills to pay, and other responsibilities. I was always secretly grateful I wouldn’t have to do any of that, experience any of that, or have the societal pressures that the adults around me seemed consumed by. The goal for my life was tragically simple: I just wanted to celebrate my 21st birthday and then take my last breath. I would never have to worry about a mortgage, gray hair, or needing a refill on Botox.
I still remember staring down at my phone when I was 25 years old, from a hospital bed after the doctor walked away, reading the definition of disabled over and over. This was the label that was put in my medical charts and, for most of my life, haunted my perception of what would be possible in my short life with CF:
dis·a·bled (adjective); (of a person) having a physical or mental condition that limits movements, senses, or activities; synonyms: handicapped, debilitated, crippled, lame, paralyzed
As I read the definition, I was reminded of a poem I once wrote that read, “A disease is simply death, sprinkled with a sliver of hope, an automatically failed test, titled learning how to cope.”
The day the social worker said I legally qualified for Social Security, I remembered imagining an hourglass slowly emptying to the bottom. I remembered thinking there were really only 2 solutions to how I felt:
- I could allow myself to be chained to this new definition of who I was.
- I could ignore it entirely and find things to still be grateful for.
This year, I turned 34. As I left my Botox clinic, I sat in my car and checked a few emails and phone notifications. I will be on the road for 40 weeks this year for my career, blessed to have recovered enough to experience the joy of a career. I achieved a level of aging where I actually get to experience and pay bills. And a surprising smile washed over my face as I remembered the 7-year-old me, afraid of having a career and bills and wrinkles. If I could go back, I would tell her, “it gets better, not worse. Be brave little one, for the challenges always end, and the beauty you find in them will always remain.”
CF taught me more in these 3 decades than what some people learn in their entire lives. Perhaps, if I can find time to reflect on all that is wrong with my life, I can find time to reflect on the idea that aging is a gift. I read a quote once about how if we could physically manifest our problems into an object, and put that object in the middle of a pile with everyone else’s problems, we’d reach quickly to take ours back so we wouldn’t be stuck with anyone else’s.
Perhaps I should be grateful for all of the stressors I am experiencing because I lived long enough to experience them. Maybe, that’s the real lesson. I, the child born to die, am happily a stressed, living adult with a grateful heart for the naive younger version of myself.