Birthday musings

Today I am 41 years old. 

A year ago I had a huge blowout bash to celebrate my 40th birthday. The party was spectacular, but there was definitely a grim intent behind it. At 40 years old, I knew that I had far exceeded all expectations regarding my life expectancy. I was increasingly aware of this as my health deteriorated in recent years, and particularly when my lung function dropped sharply during the 3-4 months immediately before my birthday. I was keenly aware that I might not have that many years left, and I wanted to celebrate with as many of my family and friends as possible while we still had the chance. It was a very deliberate "come to my birthday, not my funeral" celebration. 

Even with all that, I had no idea just how quickly my fears would be realized. At the time I thought I had at least a few more years left, and I was just taking advantage of the 40th birthday milestone. Little did I know that just a few months later I would be in respiratory failure, on the verge of being ventilated, fighting for my life and waiting desperately for a lung transplant. Things got so bad during that time that I had multiple conversations with my loved ones about dying, trying to prepare them as I had been preparing myself. By the end I was so miserably uncomfortable that I actually wanted to die just so the suffering would be over. I was holding on by my fingernails, surviving one day at a time. I certainly wasn't thinking about my 41st birthday, and if I had it would have been to wonder whether I'd even see it.

Yet somehow, miraculously, here I am, celebrating yet another year of life. It definitely isn’t the life I would have expected a year ago, both for good and for bad. On the one hand, I can BREATHE, to an extent that I had forgotten was possible. I’ve mostly lost my trademark CF cough. I’m putting on weight without even trying, instead of struggling to hang on to every pound. My health is SO much better than I could ever have imagined! On the other hand, I’m still recovering from an incredibly difficult, complex, painful, and invasive surgery. I’m managing both short and long term complications, and may develop additional problems as time goes by. And I must always live with the knowledge that rejection could strike at any time, and that there’s no way to predict if or when that or any number of other complications could take me out.

It’s definitely a mixed bag – but, I’m alive! And as long as I’m alive, there’s always hope for better things and positive outcomes. Hope is a somewhat unfamiliar and, honestly, frightening emotion for me, and I’m still learning how to integrate it into my life. For some reason I have a much easier time anticipating and preparing for the worst. But I’m trying to learn how to infuse more positivity into my life, and to start anticipating the best for a change.

I’m 41 years old, but my lungs are only 20. Against all odds I’m still alive, yet for some reason my dear donor lived only half as long. I unfortunately don’t know anything about my donor, but it’s clear that their life ended before it even really began. In a way, every birthday that I celebrate extends their life just a little bit longer. They are an essential part of every experience I have, every single breath I take. I hope that I can use those breaths and live my life in a way that would make them and their family proud.

I spent my entire adult life expecting to be dead long before now. Suddenly, I’m trying to imagine what it might be like to continue living for another decade or two. That’s a lot of birthdays I never expected to see! However many I get, I hope I can make the most of them, and always remember how fragile and precious every moment of life truly is.