The month of May has become quite significant in my life. My better half and best friend, Brandon, celebrates his birthday in May and I don't take birthday's lightly. May is also Cystic Fibrosis Awareness month which is incredibly important to me because Brandon was diagnosed with Cystic Fibrosis shortly after he was born. Before I met Brandon nearly four years ago, I knew little about Cystic Fibrosis (CF). I knew that my Grandfather was always a huge supporter and advocate for CF. He participated in many CF events and raised a lot of money for the cause but he passed away long before I met my boyfriend. You can try and tell me that the connection there is purely coincidental, but I won't believe you. God had a special plan to create the connection between two very important men in my life and I'll always be grateful for that.
CF, according to the Cystic Fibrosis Foundation, is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. There's a a defective gene that causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Can you begin to imagine how that feels? I can't. I was always given the scenario, breathe through a straw for 60 seconds. At first you're wondering why someone would complain, it's not that hard. Then it starts to get harder, your lungs strain for more air and your body works overtime because something just isn't right. Your head starts to pound and you might even get a little panicky so you take the straw out of your mouth. Finally you can breathe normally again, the crazy part is you probably didn't even last the full 60 seconds. For the people with CF, that "straw" can't be taken out. Every breath they take is a challenge but it's also not to be taken for granted.
Unfortunately there is no cure for CF, just a lot of medications and treatments. However, these treatments and medications, along with newer ones, have added so much additional time. According to Cystic Fibrosis Foundation, in the 1950’s a child with CF rarely lived long enough to attend elementary school. Today, the average life span is 40 years old, even better news is that there have been people with CF who lived into their 70s.
One thing I have always noticed and admired about people
with CF is their resiliency & positivity towards life. Every single day
is a struggle to breathe but yet I read on The Telegraph that just this month the first person with CF, 40 year old Nick Talbot, has climbed Mt. Everest. Nathan Charles is a professional rugby player who would rather be judged by his performance on the field than his condition. Kate Marshall was named High School Athlete of the month by Sports Illustrated as a sophomore, she was the first person with CF given this honor. Bryan Warnecke was the star of One Republic's music video for their song "I lived", if you're up for some tears I suggest you watch it. Mike Burke has competed in nine marathons, 20 half marathons and a triathlon and he's also written a book called "Waiting to Die, Running to Live". CF doesn't seem to slow people down, it pushes them to do more.
Personally, I see the daily struggles my boyfriend has. The
treatments he does everyday, the constant medications he's taking, the doctor
visits, the restless nights of sleep, levels of pain that can bring a grown man
to his knees, the miserable coughing that has me convinced that one of his
lungs is going to come up and so much more. I promise you he’s going to cringe
when he reads all this, he is not the type of person that shows his weakness or
even wants people to know about his CF because he doesn't want pity or sympathy. But I can’t help but share his story
because I’m so unbelievably proud of him. Although there are moments of
weakness when the pain in unbearable, he has never let CF rule his life. He
races the National PROX ATVMX Championship series and the local
Outlaw series at Breezewood Proving Grounds.
He loves to rock climb and recently took a trip out to Utah to conquer the infamous towers.
He puts in long and hard hours at his job and loves to do landscaping and hardscaping on the side. He has one more semester to go before he graduates college and becomes a Technology Education teacher for middle and high-school students. He is an phenomenal artist even though he wouldn't ever admit to it, he has great woodworking skills, he's mechanically inclined, and he can fix just about anything that is broken (usually by me). He is an incredible teacher with some serious patience to those around him, an avid hunter who loves being outdoors and a firm believer in thanking the big man upstairs for all that he has in life. His heart is bigger than most people will ever see, he puts others before himself and will go out of his way to help anyone in need. He loves his family and friends and for some crazy reason he loves me unconditionally. He's done so much in his life and he's eager to show CF who is boss the rest of his time here.
There are many different kinds of heroes in the world we
live in today. Some fight crime, some go off to war, some run into burning buildings but
my hero battles Cystic Fibrosis every single day and wins. Brandon, you've forever changed my outlook on life and I can't thank you enough for that. I love you.
