Cystic Fibrosis at 30

It’s been a while since I last blogged about my life. I suppose that’s the price I’m paying for oversubscribing to credits this academic year – a small silver lining of hybrid/remote school! My blogging hiatus led to missed commentary on a lifetime milestone. I turned 30 in April!

I won’t lie, hitting 30 does feel a bit like an achievement, but it also, and maybe somewhat shockingly, feels like I’m getting slapped with realization that old age is  certainly within my grasp.

I guess yard work on Saturday mornings before 8:00 is just the way my life looks now.

I have had the nasty habit of referring to friends, classmates, colleagues and myself as kids – a catchall phrase that seems to be holding less and less meaning for my generation. I suppose 30 is the year I finally stop that!

As I barrel towards finishing off my MBA program, and enjoying a vaccinated network of friends, I haven’t really had the chance to stop and reflect on what it means to be 30. Over the weekend, I stopped to think about it and talk it over with Darcy.

I mentioned that I had caught a tweet from Kate Eveling – a woman with CF over in the UK – who tweeted a thread where she mentioned she missed out on her 20s:

I have felt the same way about the better part of my 20s, too. Thanks, Kate for speaking up about something that I bet a lot of us have been feeling!

It wasn’t that I didn’t enjoy coaching football, hockey and kicking off meaningful work in patient advocacy, it’s that as I was living some of my younger years, they weren’t exactly looking like how I imaged they would.

My college friends moved off to different cities, spent weekends and evening seeing each other, doing things with their new roommates, talked about career moves, and looked like – through the lens of snapchat or whatever else – they were having a blast.

I was left with the perception that I was left out, and despite all the great things that I did enjoy during those years – leading a high school hockey team to the doorstep of the state championship, meeting Darcy, and traveling from one speaking engagement to the next – it seemed like something was missing.

I mean I had every intention of not living at home with my parents after finishing up college, but my deteriorating health had other plans for me.

I was fundamentally in survival mode. My survival mode – saying no to more opportunities than I care to admit – was a very clear tradeoff to preserve any health that I had remaining. The choice was harder and harder to justify because the progressive nature of respiratory disease meant that no matter what I did, my health would continue to slip, albeit slowly.

When I was 22 my doctor spoke the dreaded words, “we’re running out of options” as I started onto my 5th or 6th course of IV antibiotics in the stretch of a single year.

The cringe I feel when I write those words sends me right back to the living room of my family home. Those were the days before MyChart, so the doctor gave me a call to interpret the latest culture I had given before cycling onto what seemed like the 100th different antibiotic. At that point, all I was left with was the mere hope that anything would work.

Survival mode meant that I was always thinking about commitment, different excuses in front of friends planning trips or events, and a deep longing for when I was healthy. Darcy remembers back then as the time I used to talk about memories. Memories, memories, memories; I lived for memories, especially the ones that I had. Rarely was there talk about new ones.

I loved to talk about my high school days playing football, the friends I had in middle school, and the mischief we stirred up in college. I loved to talk about when I felt good – days when CF was nothing but a glimmer in the background.

Rarely did I talk about anything that lay ahead of me.

My health was so delicate I was fearful of upsetting the very fragile balance that held everything together. My lifestyle was a lot like a week-old band aid that could rip off at any time and send me towards a pulmonary exacerbation.

A late night with my friends? Pulmonary exacerbation

Cycle inhaled antibiotics after 28 days? Pulmonary exacerbation

The week following a BEF fundraiser? Pulmonary exacerbation

I was very much stuck in a purgatory-like state where pushing myself just a little too much led to another call to the medical center for help. CF is an ugly place when the daily treatments no longer work.

When I go back and look at some of my earliest blog posts, they were all memories strung together as lessons for anyone who wanted to read (thank you for reading!). Foreword looking statements are few and far between in the earliest parts of my blog archive.

The ultimate risk taker in all of this was Darcy. She signed up to be a forever friend in the middle of some of my hardest years. Even before Trikafta, she pushed me to grab some of the independence I longed for – get an apartment or take a trip with her.

It was so hard for me to articulate the delicate balance that I was living, but she saw it – everyone around me did. I was fragile.

Those days were certainly hard for my mom, too. It was almost like life in the Esiason house was right back to where we were even before high school when I needed help with daily treatments and everything that went into them. One particularly brutal course of IV’s turned our kitchen into what I imagine a pharmacology lab looks like. We were putting together different doses of a particularly toxic antibiotic based on daily lab work because my kidneys started to buckle under the strain of it all. Yet another forced CF tradoff: strained kidney vs a stubborn infection.

The thing is, though, my survival mode was not a bunch of lost years. I was making the memories I had longed for. I was also learning about myself and gaining a perspective that would be valuable down the road. My days with critical illness are still serving as the backbone for many of my decisions, and I hope people out there with CF feel the same way! You lived through something hard, use it.

There was the time before the season opener in my first year as the head coach of the hockey team when the captains stopped me in the middle of my pregame message to say they wanted to wear CF decals on their helmets for the season.

There was the President’s Day pond skate when I allowed myself to think ahead for the first time in my life and imagine a life with Darcy.

There was the spur of the moment road trip to Philadelphia to go to the Army/Navy game, which included an hours long hunt for the right cheesesteak joint after Navy (ugh) kicked the crap out of Army.

And, of course, there was the dinner time “Jeopardy!” my mom and I loved so dearly even when I was sick (which even forced me into thinking I could tryout for a coveted spot on the show [I failed the written test]).

The list of things that I wish my 30-year-old self could tell my 22-year-old self after hearing, “we’re running out of options” is a list that would run far longer than any blog could ever contain, but I’d start with, “it will be okay.

…Because everything is okay, if not better than I ever could have dreamed.

Of course, I always imagined a cure, and wished for it on my birthday when I blew out the candles on my cake year after year (talk about things that need to go away after Covid), but I do not think I ever realized what feeling better meant for me, my family and now my fiancée. Yes, I still wish for that cure, but where I am now is a place that I think I am perfectly happy with.

30 years old with CF is the milestone I never though too much about because I couldn’t really imagine life after. Now I can, but when I look back, I’m confident that my early twenties were not wasted. I traded them in for a chance to live later, and now I’m finally realizing the value of that deal I made.