Life with chronic illness can seem like a series of calculated risks. Some choices can have a huge impact on my health (positive or negative), and I’ve been through enough in my 27 years to know that it sometimes pays dividends to make conservative choices. Other times, though, I need a kick in the ass and my support system knows it – especially if I’m trending downwards, going through a rough patch, or allowing something to consume me.
It’s important to walk outside my comfort zone from time to time and find new boundaries, whether I like it or not, and my support system has been helping me do just that throughout my entire life.
When I was a little guy I would not willingly go to the CF clinic. I had a number of traumatic medical experiences when I was very little. From the time I was diagnosed at age 2, to the time I ran away from the Interventional Radiology Unit a few years later, I had quite a few horrible days in the hospital. Some of those moments exist outside of what I remember, like when I went into respiratory distress and was finally diagnosed with CF, but they certainly had an impact on the way I saw the clinic in those days. Those experiences really set me up for several tough years when it came to anything medical. I wouldn’t even let the nursing team put a blood pressure cuff on my arm. That’s how difficult I was.
My parents tried everything they could think of to make trips to the clinic a little easier. From bribes to physically prying me out of the car in the parking garage, trips to Cincinnati Children’s Hospital were physically and emotionally exhausting for all of us. Then my parents decided they’d try something new. They allowed my best friend, Nikki (who doesn’t have CF), to come to the clinic with us. Nikki was a few years older than me and she would quite literally do all the medical testing with me, except she would go first. The care team would take her blood pressure, temperature and even let her do PFTs – our families always used to joke that she must have been the healthiest kid in all of Cincinnati after getting a physical every few months. Then, to give the impression that I was brave (and probably because I had a crush on Nikki), I would follow her lead and reluctantly go through all the testing just like she did. There was even one time when the IR unit let her sit in (what I call) the control room during a PICC placement – the room with all the computers and screens behind the lead walls and glass window. Nikki’s willingness to lead by example made clinic visits tolerable.
I became self-conscious of the smelly side of CF when I was in first grade. No kid wants to be the smelly kid in class, and after being out of school for a few days from, what I called, a stomach ache, I was worried I would take that title.
To provide some context, we did have a smelly kid in class – we’ll call him Stanley. I also had one of those super old school first grade teachers. She was an older woman, and the kind of person who made going to school everyday incredibly enjoyable. But she did do a few things that would probably make us scratch our heads these days. Every time Stanley farted, she would spray her bottle of Febreze at the front of the classroom – needless to say, it was a scene every time Stanley farted. Looking back, who knows if it really was Stanley farting every time?
I became worried that my first grade teacher would start to target me with the Febreze can when I returned, because I knew my brand was really bad – though I think I was too young to associate it with CF, I just knew I had smelly farts. I shared my concerns with my mom after I told her that I refused to go to school. Knowing that my farts were, in fact, associated with my CF, she said we could talk to the teacher and make her aware of my issue. So that’s exactly what we did. On the day I returned to school, we arrived super early so we could talk with the teacher. My mom told my first grade teacher that I was worried I would become the smelly kid. To my surprise (and I swear to God this happened), my first grade teacher, without missing a beat, responded to us, “Oh don’t worry honey. If you fart, we’ll just blame it on Stanley!”
I have never felt self-conscious about my CF since.
My football coaches bent over backwards to give me an enjoyable high school football experience, despite high school being the time when my health first suffered a decline. They recognized how much football meant to me – it gave me the opportunity to feel like a regular kid and compete. They also saw what kind of impact football was having on my body – both the good and bad. They watched me get stronger and stronger when I was feeling good, but they also saw me get sicker and sicker as the years went on – culminating with the time I collapsed in a little pool of blood I had just coughed out of my lungs. Most people remember the time ESPN did a little story about me during my junior year of high school after I threw my first TD pass in a varsity game. It was one of those sick kid overcomes the odds stories – I mean, let’s call it what it was.
Lesser known is the time I actually started a game at quarterback during my junior year after the starter was ruled out for an illness. My coaches empowered me to play to the absolute best of my ability. We played against the best team in our league, and as a surprise to no one, I was in way over my head competing against kids who were miles ahead of me athletically. The coaches on the other sideline recognized the situation as well and did their best to provide a safe experience for me. Although I had been playing contact sports my entire life, like hockey, which came naturally to sort of came naturally to me, football was different. For the first time in my life, I was given the chance to prove myself way outside my comfort zone. I was playing against kids who were well over a 100 pounds bigger than me, stronger than me, faster than me and smarter than me… and I survived. That Friday night in October 2007 remains one of my most cherished memories.
College is basically 4 years of living outside the comfort zone, but specifically during my senior year when my health was very much in rapid decline, my doctors gave me some advice that I’ll hang on to forever.
I had been planning to go out of the country on Spring Break with a bunch of my friends when I developed pneumonia a few days before we were slated to fly away. It was heart breaking. Looking back, it was a small problem in the grand scheme of things – going on Spring Break wasn’t a make it or break it experience – but it was definitely a quality of life moment. Things, of course, became totally inflamed. I was worried about canceling the trip, missing out on a memory, and dealing with the emotional stress of my 4th or 5th pulmonary exacerbation in a matter of months. Both my doctors in Boston and New York, however, quickly put all of that to bed. They expected me to keep my plans and taught me a very important lesson about declining illness. Although I was sick, they wanted me to know that my health should never serve as a deterrence from making a lifelong memory. Sure, the trip would look a little different than I had planned – I’d be up in the middle of the night doing an IV while the rest of my friends were running around the island like drunk idiots – but I’d still get to be there with them through everything else…. And that’s what I did. Since then I haven’t let an IV deter my plans. Once the meds start to work, and I’m back on track, life returns to close to normal as possible.
Believe it or not, I never wanted to be a motivational speaker and lecturer. I’m actually quite shy when it comes to large crowds, and meeting new people. I’m never really the first in line to want to go to some huge social gathering or party. I’m pretty content with a slow, laid back lifestyle. But alas… here we are.
After college graduation, my dad and Boomer Esiason Foundation’s president Dave Rimington saw that I did have a knack for public speaking and putting myself out there, but it still wasn’t something I saw myself doing. Nonetheless they pushed me to enroll in an executive speaking course so that I could, at least, have the training required to be an effective communicator should I decide I wanted to be. The course showed me that I did have the tools necessary to start a career as a lecturer and motivational speaker, and before I knew it, I was on the road traveling from CF Centers to Sale Meetings and everywhere in between hoping to influence the general perception of people living with chronic illness.
…Here we are validating my dad again… eye roll.
Within my relationship
I could sit here and write a book about the number of times my friends have pushed me beyond my boundaries, but we don’t have time for that. Instead we’ll focus on the here and now, and how my girlfriend has pushed me to be change some of my ways. One way, specifically, was highlighted just last week. She was in Tennessee with me to meet some of the families at the my CF Ed Day at Eastern Tennessee Children’s Hospital, but we had the entire day to kill before the event, so we took a ride out to Great Smoky Mountain National Park and did some hiking.
Now, if you knew me a few years ago, and I told you that I went on a hike, you’d probably slap me across the face thinking I was lying to you. Darcy loves to go hiking, though. So I’ve been dragged more than happy to join her on a handful of hikes over the past few years. Just last week we made it to the top of the highest point in Tennessee, Clingman’s Dome. “The hike” was really a mix of driving some of the way, and then hiking the rest of the way. We were at some altitude, though, so we were about as far outside of my comfort zone as I have been in a while, but we enjoyed our time and got this pic:
The lesson here is that you should be willing to go outside the comfort zone because it’s going to help shape your personality… and you never know what kind of memories you may make for yourself!