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.
