Please join me as I walk you through the journey that has been my life with cystic fibrosis and the survivor's guilt that's been its partner in crime.
When I was 10, my mom received a phone call about the results of various tests that -- at the time - made no sense to me. She called me into her room in our home in Canada and said, ''We've just won the lottery!'' I didn't know much at the time, but I did know that meant money! Needless to say, no money ever arrived -- that was her way of letting me know that I didn't have CF.
Fast forward six years and my then-family doctor was at a conference for cutting-edge CF news. It was there that she happened to talk with another nurse who had been reviewing my test results -- the upshot being that I did, in fact, have CF. From there my head spiraled with coming to terms with all things CF-related.
Fifteen years after the diagnosis of having both genes, while on my annual visit to clinic this past September in my new home in England, the team's doctor asked me what mutations I had because I haven't ever displayed symptoms. (It turned out that the files from Canada regarding my gene types had either never made it to England or had been misplaced.) I'm also among the 2 percent of males with CF who can have children and my FEV1 has always been north of 100 percent. He wanted to test my DNA to see which mutations I had. As you read this, I'm still waiting for them to confirm that I do have CF.
Because I have a good friend with CF who has around 30 percent lung function, I have always felt dreadful. It doesn't seem remotely fair that for the past 15 years I haven't had symptoms. The time it hit me the hardest was when I got on a train in London. I read in the newspaper about a 28-year-old woman who had CF. Her one life goal was to get married. She ended up marrying her long-time boyfriend while she was in the hospital. Just a few weeks after the wedding, she passed away. I cried for the entire hour-long journey. It's hard to put into words the guilt I felt and feel. Even writing this now is hard.
The challenge of this entire situation is that -- on one hand -- I understand what CF means and how it ultimately will treat me no differently than the rest of the community later in life.
On the other hand, it's a struggle to come to terms with being given such a mild form of something that -- in most other cases -- is an absolute nightmare for the ones who are afflicted with it.
Feeling guilty is a daily occurrence and not one that rests lightly. Please know if you are also in a similar camp, we few owe it to the entire CF community to do everything in our power -- each day on this wonderful Earth -- to do what they struggle to do. Personally, I have a real love-hate relationship with running -- I hate having to do it, but I love how it helps me mentally. Running a 3K three times a week helps not only clear the lungs (Who doesn't love a good FEV1 score? Can I get an amen!), but it also gives me the chance to sort things out in my head.
It's our duty to go forth and make the most and best of a bad situation. We should never give up on our dreams and goals, push forward to give back to the less fortunate in our clan, and shine the brightest light we know how to shine in this seemingly overwhelming darkness. So, if you're like me, please go for a run, play sports, do the unthinkable that so many of our brothers and sisters may struggle to do.
Personally, I play the drums to stay fit and have been fortunate to make that a career. In the past, I attempted a drum-marathon to raise money for CF. I've applied to do it again once this pandemic is over and will be aiming to play 150 hours and raise (hopefully) $1 million for CF.
Together, we are unstoppable and stand stronger than CF would want us to. Let's send it packing one jog, one touchdown, and one step at a time!
There is nothing impossible to him who will try. -- Alexander the Great
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