Life on a Tightrope
Updated: Oct 28, 2019
By Meg Kiley Murray
I thought I was a goner today. This time, however, it wasn’t going to be CF that would take my life. No, I was going to die in a freak horse trampling accident at a polo match. I thought my last sight on earth would be a horse and jockey barreling towards me. This made me chuckle. That would be just my luck.
Alas, I did not die. I did manage, however, to tear off my insulin pump during a not-so-swift maneuvering out of my chair, but I digress. The real story of this day is that I am trying to live.
Like many people with a chronic disease, I have become too sick to work or fully enjoy my previous life. And while I dance on that tightrope between being sick enough to get listed for a lung transplant and still well enough to hopefully try the triple combo therapy when I get access to it before I am in desperate need of lungs, the challenge is how to live well with these broken lungs.
And while I dance on that tightrope between being sick enough to get listed for a lung transplant and still well enough to hopefully try the triple combo therapy when I get access to it before I am in desperate need of lungs, the challenge is how to live well with these broken lungs.
I spend most of my days managing my health, but those tasks don’t sustain me. Rather it is the little breaks between naps and nebulizer treatments that bring me joy. So today I wanted to go to a polo match because it was something new and different. A new experience to temporarily distract me. A little time with friends who happily chatted about their kids or work or the latest show on Netflix. Besides the horses nearly running me over, which gave everyone cause to laugh, it was a lovely afternoon, even when it was cut short by my need for a breathing treatment. I have realized I cannot wait until an undetermined time, either post-transplant or new drugs, to enjoy my life and the people I love.
I try to give my lungs daily pep talks and tell them to ‘hang on’ as continue to ache and burn; that we are so close to new drugs that could stop the decline. I celebrate others’ increased lung function with amazement and wonder what my life would be like to gain that too. But I’ve realized that I can’t hang my happiness on an external event, either transplant or new drugs. With each passing season that my health moves through, the new drugs always seem just out of reach, and transplant continues to be the contingency that I'm also not quite ready for.
Until a new treatment option becomes available to me, I’ll continue to plan little excursions and moments with the people I love - to be open to new experiences during this chapter of my life. And I will probably avoid sporting events that involve horses.
About the Author: Meg is 39 years old and lives in New England with her husband and two dogs. She enjoys spending time in nature, sewing, and a good DIY project. She is the creator of @manicuresandmedicalbills and can be contacted at firstname.lastname@example.org.