I can remember the day I discovered the truth that I had already suspected in my heart: cystic fibrosis (CF) is a life-shortening disease. I’m just old enough that I couldn’t Google whatever I wanted to at the time. I learned this information from a calendar sitting in my CF clinic. In it were pictures of kids with CF and their stories. Simple enough.
I read the story of one child. It included a sentence that stated something like: “[Name] doesn’t let the fear of a short life interfere with his happiness!” I can’t remember if this was the precise wording, but the gist was the same. I think, in my heart, I already knew the truth. Frequent doctor’s visits, daily medications and chest physiotherapy treatments, and hospitalizations weren’t normal things. And in my young mind, I knew that meant my life would never be as long or straightforward as it was for others.
Age is a strange thing. On our birthdays, nothing changes (unless it’s one of those big legal ones). As humans, it’s a way for us to put a quantitative value on our lives, but I suspect that our age plays more into our mentalities than we realize. Last week, I turned 25, which isn’t all that different from being 23 or 24. I’ve been on Earth a little longer; I am halfway through my 20s, which I suppose is cool to say. For most people, these milestones are a way to feel loved and celebrated. But with CF, birthdays can feel darker.
It isn’t uncommon for CFers to talk about life expectancies, particularly when referring to how long they were “expected” to survive. We reveal the triumphant stories that we weren’t expected to graduate high school, let alone reach our mid-20s. So, our ages hang over our heads like perpetual rain clouds. Each birthday is a milestone, but that’s precisely why this yearly occasion feels dark. When life is fragile for everyone, discussion of the topic becomes nothing more than noise surrounding the signal. With CF, life is more immediately fragile, and our birthdays remind us that our next one is not guaranteed.
It’s difficult to vocalize the dichotomous emotions that come with birthdays and CF. When I was 16, I didn’t know if I’d live to graduate college. I wasn’t even thinking about my mid-20s; I never allowed myself to see that far into the future. I have a hard time looking ahead right now, although my health is exceptional and CF medications continue to improve.
My sister died at the age of 29. I’d been healthier than her my entire life, but I still feel as though my destiny was set in motion at the time of my birth, and my sister’s death sealed that fate. If I allow myself to visualize the distant future when I’m 50 or older, I fear that vision removes the value of each day. If I don’t allow myself a little of the illusion of immortality that other 25-year-olds have, I may not take the big leaps in life that lead to growth, joy, and new experiences.
I am grateful to have had another birthday. I want to value my annual milestones, but I don’t want to believe they are anything other than a day to reflect on my life so far and my future. That requires me to have an intimate understanding that life is fragile but a complacent life is boring. My birthday is a symbolic occasion, even though nothing has really changed.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?