The Limits of Chronic Disease
Last updated: September 2022
I was diagnosed with cystic fibrosis (CF) at an age where everything was already changing. I was 12, just on the cusp of my teenage years.
It was quite a shock at first, but I set out to not let it alter my desires. I’d always wanted to be a writer and to have a family early on. Marrying my high school sweetheart definitely sped up the later part. I married at 18. We had our first son a few weeks before my 20th birthday. Our second son was born when I was 23. I’d had my first book published a few years later.
For a long time, I thought that was me not letting CF limit me. However, as a 37-year-old adult, I have to admit I did let it limit me. Early on I felt I had to choose between being a mother, having a career, and pursuing a college degree because I just didn’t have the energy to balance it all. Or the time. I worried too much strain could take years off my already expectedly short life and so I chose what I wanted most. Marriage. Motherhood. A family!
The unspoken truth
It wasn’t just the focus on family, but this underlying voice that said, “why waste precious years, if you have no guarantee you could even use your degree?”. I came up with other reasons, so I didn’t have to say it out loud. I’ve had this voice inside me that says, “Don't bother. You’re going to die soon anyway.” I wanted to spend all the time I had loving my family, but I didn’t want to voice that out loud.
This core belief made me feel like I shouldn’t challenge myself or aspire for a more fulfilling life. I already was extremely fortunate just by surviving through my 20's and having birthed two healthy boys. I shouldn’t waste time on the possibly unattainable. Instead, I have smiled, loved, and laughed my way through life, pretending its fleeting existence doesn’t weigh on me. I have put my focus into loving those closest to me, so just in case I ever perished, I at least knew my life was well spent, not nose deep in my studies.
I tried to ease my guilt over perhaps leaving my children motherless and my husband, wife-less, by giving them all of myself. No distractions. I made every birthday party extravagant, every occasion a celebration. I went on every field trip, showed up for every class party, every award show. I tried to focus on making great memories, so if I left their lives, they at least had those great memories and no doubt about the intensity of my love for them. I felt guilt at the thought of taking away from my precious time, to pursue something that would probably never have time to pan out.
Living a content life, I have been mostly happy! There have been many times where I worked hard and succeeded. My first children’s book was one of those times. There have been many passions I explored. Raising sons I’m immensely proud of, has been my biggest source of happiness. I built a life with my husband I was happy with, even though we eventually parted ways. Even then, he still continues to be one of my best friends. I met so many people in my life I love wholeheartedly. I have built a life I truly love, and yet I’d be lying if I didn’t say my diagnosis affected my life choices.
There were always those contemptuous thoughts in my head: “What is the point? To what end is this job you have worth? Why seek out a profession your health can’t back up? You’re going to die soon. Do you really want to leave your children motherless, their father widowed just to prove you could succeed professionally? Why bother?” These thoughts were an always present, invisible weight I carried around everywhere I went.
A miracle drug
Suddenly life changed a bit in 2019 when Trikafta became a new part of my life. Within weeks I felt different. I gained weight. My lung function increased. The hospitalizations decreased (dramatically).
I suddenly found myself aware that a whole new life may be before me. The weight of potential loss was lifted from me. I’m still sicker than many, but for the first time in my life I felt a tug of hope at living a more normal life. I became largely aware of the opportunities I’d been afraid of, because of limitations that had just drastically decreased. I suddenly had this whole new world before me.
A change in circumstance
Sadly, around this time my marriage was coming to an end. Although, I’m so grateful to still have him in my life as a solid supporter- I was forced to look at my life and figure out exactly what I wanted. For me. I realized I wanted to grow my writing career and set forth pursuing it.
For the first time in years, I feel confident that there is a whole potential future before me. I’m imagining a fulfilled future. I am looking forward to my career, as well as my family. With the possibility of 20-plus more years, I am excited. It's within my grasp, and I am reaching for it. Some days I still think to myself, “Why bother?” but there is now a louder, optimistic thought saying, "What is next? Whatever I want"! Why? Because I can.
The future is mine for the taking, and I plan on grasping it fully.
Have you participated in clinical or market research before?