May is Cystic Fibrosis Awareness month. I had originally planned to write a blog about the nature of CF and what is being done to help. But I think I've done a lot of that through many of my blog posts, so I ended up straying to an entirely different topic keeping with the tune of my last post, still related to cystic fibrosis awareness. Sometimes, you gotta be honest with the cold hard truth, CF sucks and something needs to be done.
Underneath my positive you-can-do-it attitude is the realization that my life (currently) with cystic fibrosis is very different from the life and outcomes of many of my cf counterparts... it is also very different than my life has been in the past and probably will be in the future. I count my blessings every day of health that I am able to have despite cystic fibrosis, because I know that this isn't every CFer's reality, nor has it always been mine.
Cystic fibrosis is so frustrating in the way that it claims the life of many, silently grips harder and harder on the lives of some, and leaves other lives seemingly untouched. I fall somewhere in the middle, where I've experienced the difficulties of cf but have never reached the point that many CFers have. But just like many CFers have come to realize, I know that I am not invincible, and the nature of cf is that it never goes away... and mainly it only gets worse. In some ways, though I have heard, read, and seen the ways that cf affects people at the end of their lives, there is still much to learn and understand. I have read the stories of cf warriors who have waited for and received lung transplants, I have mourned the loss of countless CFers, some who I had formed some sort of relationship with, others who were simply a name and a story, and I have been supportive of the lives of those CFers who I have gotten to know currently. Through all of this, I have been inspired.... inspired by people who lead fearless lives, who still lead beautiful lives in the face of adversity, and who had the unfair circumstances to be one of CF's victims. Sitting here knowing that I can breathe a full breath while other people with cf aren't as lucky is so very difficult. It is difficult to not feel guilty, to want to switch places, to scream that it isn't fair. It isn't fair that right now, there is no stopping cf. Though we can delay its progression and treat its symptoms, it still sneaks by, it still kills people who deserve to live, and it still causes pain and worry in many others lives.
In this CF awareness month it is important to recognize the countless ways that cf affects a life. Whether it is causing grief to a family, diminishing lung function, or silently festering in the bodies of those who have yet to experience some of its worst effects.... cf awareness must be spread. Why? Because the more people who know what a horrible and unfair disease cf is, the more people we have on our team fighting back through supporting research, donating to the cause, and being by our sides in our battle with this illness. This month, I will be handing in my registration for my 2nd Falmouth Road Race running for the Cystic Fibrosis Foundation. I'll run for the people who aren't as lucky as me, I'll run for my future and for the future of all CFers, and I'll run as a way of showing cf that we aren't giving up.
I leave you with what inspired me to write this blog tonight... it is the trailer for 65 Red Roses, a documentary that will premier on OWN this Thursday (May 3rd) at 9:00 PM. It details the life of Eva, a cf warrior who has inspired many with her story. I followed her blog quite a bit up until her death 2 years ago. Her blog, http://65redroses.livejournal.com now serves as a memorial and testimony to her life and the impact she has made on the cf community. CF takes away beautiful lives, and Eva's life was no different. Though I never knew her, her story inspired and still continues to inspire me. I urge everyone to watch or record this documentary (I will be watching it on DVR as soon as I get home from school!) as a kick-off to Cystic Fibrosis Awareness Month and a year of fighting extra hard to push research through the pipeline and offer hope and support in the meantime.
