I spent the past couple days in Northern Kentucky and Ohio, more specifically, the Cincinnati area, where I was born and lived for the first few years of my life. I hardly have the right to call myself a Kentuckian since I’ve called Long Island home for so long, but I did live there in the early years and I do take a lot of pride in it. Most importantly, though, I was diagnosed with CF at Cincinnati Children’s Hospital. I can’t say I remember the day that happened; I was two and probably more concerned with picking my nose than learning about the serious uphill challenge I faced, but I have heard the story a million times and needless to say my family was given a rude awakening.
Traveling may not be the easiest thing to do, but it has to be done. I’m not going to sit at home all day and think about what may be out there. I have to see it and experience it all.
It may not be something many people think about, but traveling is pretty stressful for a CF patient. I get that going to the airport is no one’s favorite activity, but an overnight bag for someone with CF isn’t just a backpack. For a two-night trip this past week, I had three pieces of luggage, plus my backpack. I had one bag for clothes, another for medicine and my nebulizer and a third for my Frequencer, which is a chest percussion device to loosen mucus in my lungs during the treatment sessions. The medicine bag is almost always the biggest. Like I said, I keep my nebulizer in there, so that takes up a good amount of room. I also carry my inhaled medicines, which include some that need to be refrigerated with icepacks and some that need to stay room temperature. With those, I need to carry my neb cups. A neb cup is what the medicine goes inside in order for it to be nebulized (that may not be a word, but that’s what we say, so it works here) into my lungs. Also, so I can sterilize my neb cups, I bring a bottle of rubbing alcohol, dish-washing soap and an electric kettle to boil water. Oddly enough, the eight or nine pill bottles take up the least amount of room. The pills range all the way from daily digestive enzymes to antibiotics I may need just in case. Every single thing has its place, and nothing can be forgotten. Packing blows, dear God I hate it, but that’s the way it has to be.
I get to go back to Kentucky once a year for a Boomer Esiason Foundation event hosted by a dear family friend, Jack Cassidy. With all due respect to all of our other great fundraisers, this event is my favorite. Why? It’s simple, because we get to shoot guns. It’s a two-day sporting clay Pro-Am, and I absolutely love shooting sporting-clays. If you haven’t done it, you cannot judge me for loving it until you have tried it. If you have tried it and don’t love it like me – tough, that’s it.
This year was the sixteenth annual shoot, as we call it. I think I have only missed one, and it was because of a final exam I had as a sophomore in high school (needless to say I was not pleased that year). Since then, I have made a point of never missing it. It has also become a tradition for a bunch of my college buddies to make the trip with me, which is really awesome because they get to see a whole different part of the country and they get to see the BEF activity outside of New York. It’s actually gotten to the point where I’ve had friends fighting over who can go with me, but that’s a story for another time.
I could talk about the shoot for hours, but the trip was a little different this year because it also included going to the Cincinnati Children’s Hospital Celestial Ball, which is the hospital’s biggest annual fundraiser. It was a black-tie dinner held in downtown Cincinnati and my dad and I were honored this year. It was pretty cool. A bunch of my dad’s ex-teammates from his days with the Bengals were there, amongst 1300 other attendees. To kick off the program, a pretty emotional video was shown that featured my dad and me, but there were also several other really young CF patients that got to speak in the video. It is never easy to see a little kid stricken with CF, but it my heart I know the prognosis for them is much better now than it was for me 20 years ago, and I think I’ve been just fine so far. The video did nearly bring me to tears, though, and after that my dad, who was feeling the same way, and I had to go up on stage and say thank you to everyone who has supported the fight.
My dad always has a natural stage presence and was able to inspire the audience last night; he does an incredible job every time he gets a microphone in his hands. I can only hope to be as good of a public speaker as he is one day. I have really only been on stage in front of huge crowds maybe two dozen times, one of which being in 8th grade when I played in the Sound of Music (definitely not my best moment), so I don’t really command an audience quite as well as my dad does, but I don’t feel totally lost up there. Last night, though, I think it went pretty well. I tried to lighten the mood and make the audience laugh, so I told a story about the time was when I was just a little kid, and was so scared of getting an IV put in my arm that I ran out of an operating room (that too, is a story for another time). I got plenty of laughs and was able to make fun of my dad a little bit, so I would say it was a success.
All in all, the trip was great, and it was fun to break from the norm of the yearly Kentucky trip and go to Cincinnati for a night. I also got to see my first friend, (some would say my first girlfriend at the age of 3) Nikki. She has been a huge part of the fight from the very beginning, and it was really great, because I haven’t seen her in a few years.
Anyways, I need to get packing, I am leaving for New Hampshire tomorrow, another fundraiser – the mission doesn’t end until I, along with all those kids that were in the video shown at the dinner, don’t have to pack a medicine bag full of treatments every time we want to go anywhere. One day, we can all deal with the normal level of stress that comes with travelling, but we aren’t quite there yet.
