Jerry's Journey - Boys Will Be Boys – My CF Diagnosis

My story's not very different from many kids from my neighborhood and generation, except for the CF part. I'm the 4th of 6 kids and the three ahead of me were all boys. We grew up in a three bedroom apartment in Brooklyn and the four of us shared two sets of bunk beds in one small room. It actually was really cool because while we didn't have a lot of space, we always had the power of pure imagination and each other to make out own fun, no matter where we were. One of my most vivid memories was when we'd rip the sheets and blankets off the bunk beds, make elaborate forts and play "cowboys and Indians." My parents would freak out – they saw it as a "mess" but we saw it as the ultimate indoor playground. We just laughed and had fun!

Most days were like this – us boys wreaking havoc – there was never a dull moment! Then, in 1967 at age 11, I was diagnosed with CF and the doctors told my parents I probably wouldn't make it through the teen years. You would've thought things changed drastically for me – but they really didn't – well at least not on the outside. I think being diagnosed with CF today is a lot different from when I was growing up as there is much more hope and fewer stigmas. Back then, there would be maybe five or six other people with CF at the clinic and my mindset was a "them and me" situation. I would say to myself and to my parents, "I'm not like the others. I'm going to do really well." I wasn't going to be sick and I was determined to stay well. My parents contributed to this mindset, by approaching the grim diagnosis with a "he needs to spend as much time with his brothers as possible" instead of having me waste time on a couch indoors. They wanted me to have a greater quality of life running around with my brothers versus inside alone.

There was absolutely no way I wanted anyone outside of the family to know I had CF, so I wouldn't do sleepovers, camp or anything that would expose my treatments and illness, which generally took place overnight. You have to remember this was the "Dark Ages" in terms of CF care and I was relegated to inhaling mucomyst– one of the first nebulized medications. At night time I slept in a mist tent, that looked like a bubble and I woke up each morning with my entire body saturated. Could you imagine lugging that to a friend's house? Or camp? Fast forward to today and this treatment doesn't even exist because of the ridiculously high bacteria risk. Imagine that!

I'll tell though, the best part of all of this was that CF didn't impact my relationship with my brothers, well, except for the fights that broke out amongst them to take turns with my chest percussions – these were daily thumping on my back to help loosen and relieve the mucus build up. Other than that, it was business as usual in the Cahill household. This, along with relentless self-care and my determined, driven attitude led me to my next phase... Jerry the track athlete… but there were a few hurdles- literally and figuratively for me to get there. I'll tell you about that next!