A Reflection on the Past Six Months

I have spent about six months in Hanover, and one of the things I was encouraged to do upon setting off on this new life journey is periodically reflect on the experience. My transition into full-time student mode has been both a challenge and fantastically liberating.

The biggest hurdle of them all has been losing control of my daily schedule. In the five or six years after I finished my undergrad work, I maintained a solid hold over whatever I did and when I did it – with the obvious exception here or there. That included treatment routines, social events, travel, workouts, and just about anything else.

My primary focus in those days was surviving. I was critically ill, on and off IV therapy and in and out of the hospital quite regularly. I learned very quickly how to navigate the bureaucracy inside the healthcare system as well as the scarifies required to improve my health. I learned to give up late nights with friends, I all but quit drinking and I focused on a healthy dose of rest. I rested when the work day ended, when I felt the slightest hint of a cold coming on and when my friends and families were doing fun things around me.

The sacrifices I had to make began to elicit a horrible feeling – loneliness. I was lonely because I was giving up my early 20s to survive.

It took months and months for me to turn that loneliness into a motivator, and it came along with caring love and support from my friends family and, of course, Darcy. I had to learn how to effectively use my time to prepare for a future that I hoped I would one day have.

Now I have that future, the past 6 months have been a total whirlwind. Sitting at home in front of the Christmas tree after having completed the first portion of my path through graduate school in the woods still feels surreal to me. I am not sure I will ever get used to this feeling (maybe that’s the incessant chill of northern New Hampshire?).

The first month of school felt like a fire hose. I was hit with quantitative work that I had only experienced in stress dreams. You know those dreams we all have where you think you need to take a test to pass some sort of class or assessment, but you haven’t at all prepared for it or something goes horribly wrong? I was dealing with that kind of work! It was hard, but I made it through (I guess that still remains TBD based on my pending grades).

“It won’t be super quant heavy,” they said.

Yeah that was a lie. I spend hours and hours building spreadsheets and using mathematical formulas that still make my head spin.

For the first time in what seemed like a decade, I was learning to deal with a different kind of stress.

I was stressed about my performance within a group setting and academic performance. I was stressed about adapting to a new life.

Rather, I wasn’t stressed about my health.

Escaping health stress is incredibly liberating.

Despite having been in the Trikafta trial, I still maintained a consistent level of stress relative to my health. I think it’s a survival trait that I have developed over the course of my life.

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My life changed on April 9, 2018 when I took my first dose of the ‘Triple Combo’ in a phase III clinical trial. The triple combo, named for its various components, is a drug designed to treat the underlying cause of cystic fibrosis. – There was a 50/50 shot I would get the active drug or the placebo, but I knew I had the real thing because it worked in a matter of hours. Since then, everything has changed. – Today, a year and a half later, the FDA approved that drug under the name Trikafta. I cannot wait to see how people with CF will work to change the world now that nearly our entire community will have access to this life changing medication. – This drug is possible because of the hundreds of millions of dollars poured into developing a small molecule that could modify our broken cells. Thank you to the researchers, care providers, @vertexpharmaceuticals, @cf_foundation, study participants, and the thousands of men and women with cystic fibrosis who came before us to make this drug a possibility. – This isn’t a cure, and we still have work to do, but this is a huge step in the right direction, bigger than many of us could have ever dreamed of. – For me, these few pills each day have provided the opportunity to pursue a life largely independent of the harsh symptoms that come with cystic fibrosis. It has given me the chance to study at @tuckschool so that I can work to amplify the patient voice for generations to come! The drug has given me the life that was stolen from me as I creeped towards end-stage illness. – I can’t wait to see what it does for everyone else with CF! #cysticfibrosis #cureCF #fightCFwithBEF

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It took almost a year and a half on the drug for my health stress to evaporate and get replaced, and it only happened because I forced myself into a completely new setting.

With a new chance at health, comes the opportunity for a new life. All of us who have been given this chance must jump on that opportunity.

About half way through the first quarter this past fall, I remember looking at myself in the mirror and asking myself, “wow is this how everyone else feels?”

I was keeping up with my schoolwork, social responsibilities, maintaining an advocacy role (let’s face it, that’s never going away), and routinely working through my treatments and care.

“I can do this,” is what I told myself day after day until I no longer felt like I had to.

Some stress is a good thing because it can be a motivator.

Just like I used my health stress to determine the course of action I would take when it came to CF, so have I learned to use whatever stress has come my way at Tuck to improve my daily performance or routine at school.

Yes, I definitely overworked myself when I developed that cold back in October, but it was to be expected. School is gross and everyone gets sick eventually.

School hasn’t been my only transition, however. I have been living with a new primary caregiver for the past 6 months – Darcy! Near the beginning of the first term, we wrote tandem blogs about living together as roommates and I think we both can still say that living together has been very normal.

Whether we are taking Blinky on long walks through the snow or I am hunting Darcy down with my Nerf gun, things are very normal. What’s even better is that both of my parents trust Darcy as my caregiver.

She’s assumed the new first line of defense that had been my mom’s primary responsibility after I got home from college. I never doubted that the transition of power would be seamless.  It was.

I think both my mom and dad had a hard time seeing me leave New York for Dartmouth especially after knowing what I had been through. Deep down I think we were all a little terrified history would repeat itself – that history being my rapid decline at BC.

In fact, I remember a conversation I had with my dad about a year ago while I was applying to school. He said, “is there any reason why you can’t just do this in New York? Columbia, NYU or Hofstra?”

I gave him the same answer that I gave my parents before leaving for college, “I need to get away. I need to prove that I can do this.

Well… I think I’m doing it!

My new friends at b-school have been curious about my cystic fibrosis (hey to those of them reading this!) and it has been refreshing to feel like I’m one of the students. My new community’s unconditional acceptance of my challenges has reaffirmed everything I know to hold true about humanity.

People are good.

I hope my experience can serve as a reminder, motivator or evidence to kids with CF about to ship off to school or parents who are worried about their CF kids assimilating into a new social structure. Things can always work out, and generally will.

I have followed my tried and true formula – open and honest. My new peers have wanted to learn about my life, just as I have wanted to learn about theirs. About 50 of us from Tuck just spent a couple days in Bermuda and while we were walking through the capital city of Hamilton, one of my buddies asked me questions that I usually hear at CF Family Days. Hell, later during the trip he asked what it was like to date with cystic fibrosis in the passenger seat. His desire to learn about cystic fibrosis reaffirmed my choice to spend a few years in the woods.

I am living a new life, Darcy is living a new life, and Blinky is loving life (we are too).

My MBA is 25% of the way through and then I’ll start the MPH. Here’s to some good years ahead!