It has been a LONG time since I’ve written one of these blogs. The last year or so has gone by so fast that it literally feels like I blinked my eyes and when I opened them everything had changed. The biggest things is that I became a mom in November 2017, to a beautiful boy. Seven weeks later I graduated from my master’s degree program. And sometime between then and now I’ve been part of a clinical trial for a new CF medication that to call life changing would be an understatement. These days, finding the time to do much more than being a parent, working, and taking care of my CF is nearly impossible. But the timing of the clinical trial could not have been more perfect. 

I have a very active 21 month old now and there is absolutely no way I would be able to keep up with him if I was not on this new medication. Among the many benefits of the medicine is the fact that I have more energy than I’ve had since I was in high school. I joined a women’s soccer league this summer that meets one night a week to play a game and the fact that I can keep up, and sometimes even outrun some of my teammates and opponents, is nothing short of a miracle.

When I was in my early 20’s I attended the CFRI conference for the first time. Although now, over a decade later I don’t remember a whole lot about it, one thing has stayed with me. During a panel discussion a group of doctors and researchers were talking about the future of CF. One person in particular said that in our lifetime we would not see a cure for CF. I remember being shocked that someone would say this. My whole life, up until then, I imagined a cure was within reach. Hearing this didn’t exactly disappoint me though, instead it almost felt like a weight had been lifted off my shoulders. 

Instead of waiting around for a cure to be found, something I didn't have any control of, it had never been more clear to me that going out and living life to the fullest and taking charge of my own future with CF was what I would need to do. Fast forward roughly 13 years to sitting in a small exam room swallowing two pills, thinking back on what that man had said at the conference, thinking, maybe he had gotten it wrong. 

Although an actual “cure” for CF may still be a lifetime away, the next best thing would be a few pills you take each day that make it feel like you almost don’t have CF. Over the next few weeks, after starting the study drug, this is exactly what I would come to believe.

I have friends who have passed away from CF who I so wish could have had access to this drug in time, and friends who are still living with CF that need to start seeing their numbers go up, rather than continuously down. 

Before I started the trial I was in a similar place and at a point where I was starting to question why I was doing so much to stay on top of my health yet seeing so few (if any) positive results. 

You start to think that in order to turn things around you basically need a miracle. Although, I’m mostly sworn to secrecy about saying too much about this study, I will say to all the people waiting for one of these new CF drugs to become available, this one is SO worth the wait, and feels pretty close to a miracle.

I was watching a documentary recently and in it a doctor says something about how, “It’s healthy people who think about how they want to die. And sick people who think about how they want to live.” This is so well said and so, SO true. You will never live more fully than when you’re staring at death nearly every day. The act of living, really living, is something that people with CF come into naturally, and often this awareness starts at an early age. There is something that lives inside the people who know they are “dying” that tells them to live a little bit more, to push a little further, to look a little deeper, to fill each day with twice as much.

I can’t remember a time in my life that I didn’t understand that I had been dealt a slightly different set of cards than anyone else I knew. It’s been engrained in me since I was young, without anyone telling me to think or feel this way, that I would have to make each day count. 

I’m not always great at this but the bad days (or weeks or months) only remind me to do better. We all make mistakes, we say or do things that hurt people, we make questionable choices, we take what we have for granted, we lose sight of what’s truly important. But if we’re open to the possibility of learning from our mistakes, they too, will teach us something about this life.

One of my favorite poets, and writers, Lucille Clifton, writes in a poem,

“…come celebrate
with me that everyday
something has tried to kill me
and has failed.”

Although she didn’t write this poem thinking specifically about people living with chronic illnesses, I think every person who faces these struggles can attest to the fact that this is how lots of days in their life have felt. Everyday this illness has its grips in you, and everyday you have freed yourself, and gone on to live, despite it. For the last several hundred days life has felt slightly easier than the first 34 years of my life. And by that I mean, I’m not constantly thinking about my next breath. Or when I'll be sick next. Or worrying about the next hospitalization. The next PICC line. These things aren’t entirely out of the picture, and likely never will be, but for today, in this moment, I’m grateful to be able to just breathe with a level of ease I didn't think I would know in my lifetime. If the last 21 months have taught me anything it’s that in the blink of an eye things can, and will, change, so you have to be ready for just about anything.

 

Help Others Live STRONGER and LONGER-

 

Erin Evans is (almost) 36 years old and works as the Program Coordinator for the Cystic Fibrosis Lifestyle Foundation, managing the Recreation Grant Program. She lives in Vermont with her husband, son, and dog. She can be contacted at Erin@CFLF.org