As the year comes to an end, this is my ninth newsletter since beginning it on November 7th. In less than two months, we’ve more than doubled subscribers to over 300. I’m so, so thankful for people reading, sharing, and subscribing. Writing is my favorite thing in the world so the support begets more (and hopefully better!) writing. 2019 was a crazy year for me, but this piece is less about me and more about the lessons I’ve learned. Don’t worry, it’s not (too) self-aggrandizing. A quick reminder: Sharing posts and encouraging others to subscribe is the single easiest way to support my writing. Thanks again, and let’s kick 2020’s ass together!
The turn of the calendar into a new year is fascinating to me. It’s a random concept—the turn of December 31st into January 1st is not any different than the turn of June 12th into June 13th—and we treat it as though the world changes overnight. It makes sense, though, for us to separate our lives into neat containers; days, months, seasons, years. Our lives move in predictable patterns; they begin on a day when we’re mere brains in a shell until one day we’re finally processing the world around us. The beginning of our conscious memories is a beautiful thing. Consider for a time you existed in the world, needing to be taught by your caregivers. Humans, for as smart as we are, require guidance for many years until we can live on our own. Evolutionarily, it’s a bit unclear why we need so much more time. It could be because we live for a longer time, or because our upper limit of intelligence is far higher than other species. It helps me to think of life like this: Beautiful in that we’re able to absorb all that is around us and that we are the same particles that make up the Universe revolving around a giant star. As we revolve around the sun, nothing really changes, but if it gives us a chance to, well then, what the hell, let’s make the most of it.
The calendar turn—a New Year—is a chance for us to do one of the most human things we could ever want: Reinvent ourselves. I’ve learned that all of us have insecurities. Some of these insecurities are glaring, permeating our very personalities so deeply to where a stranger, after a brief interaction with us, can pinpoint them. Other insecurities are more buried. They may influence our personalities and decision-making, but we’re much better at masking them. When you recognize that we all have insecurities, you start to realize how self-absorbed we all are. You know that time you tripped at the store in front of a crowd of people? They may remember it as a funny thing a stranger did, but it’s unlikely they remember you for you. You became a stand-in of a funny story to them. If anything, they probably joked afterward: I’m glad that wasn’t me. We’re all preoccupied with ourselves. And we should be! Our self-interest is what guides us to be better people, to do right by others, and to make the most of our lives. Self-interest does not mean selfishness, and it doesn’t mean taking advantage of others.
A New Year gives us hope. It’s a chance for us to nicely bury the bad things of the year and emphasize what good we want to bring along. Though it means nothing in the grand scheme of the Universe, we humans are guided by the calendar. The turn of the calendar, if that’s how we outline our lives, is a good chance to reflect and make some changes.
I like to use the end of the year as a chance to reflect on the year; the good, the bad, the fun, the beautiful, my accomplishments, my disappointments, and everything else. Year to year, our lives change and they stay the same.
As we finish 2019, my family and I are ending the first entire calendar year without my sister. It’s hard to believe we are three short months away from “celebrating” (acknowledging? what word do you even use for this?) two years without my sister. When I began this year, I wasn’t in a terribly bad place but I definitely wasn’t in a good place either. The grieving process has been weird since day one. I was laughing and cracking jokes the day after she died. I have good memories from her funeral and the weekend after she died. Milestones during the grieving process are important, but dates are arbitrary, very much like celebrating a new year. Our minds are remarkably strong; we are capable of holding two apparently contradictory emotions together at once. It is possible to feel the most intense sorrow and most genuine joy in the same moment; I’d even argue that the existence of one makes us more inclined to feel the other.
In past years, in what now seems like an apparent exercise in vanity, I would recap my year. These recaps were filled with my accomplishments and failures, which itself isn’t a bad exercise (everybody should write about them privately!). I don’t even think it’s a bad thing to celebrate ourselves and invite others to celebrate their accomplishments on social media. This year is different, though. While it was my most successful year professionally—in my scientific career, in my advocacy, and in my writing—and physically—most in-shape I’ve ever been thanks to Crossfit, basketball, and Trikafta—it has also been my most enlightening year.
I entered 2019 confused, lost. The nine months of 2018 after Alyssa died felt like a wash. I wasn’t going to the gym as I should have, my writing had sort of taken off but still wasn’t where I wanted it to be, I didn’t feel like I was doing exactly the right thing professionally; life just felt bland.
Things didn’t change overnight. They never do. I can’t even put a finger on when they exactly they started to change. I had lots of hopes coming into this year. I had way too many New Year’s Resolutions. But at the end of last year, I started to joke “2019 is MY year!” I would post about it on Instagram and social media, continuously telling everybody that big things were coming in 2019. I even DMed LeBron James to let him know. I was being sorta satirical; it’s common on social media to see memes how we’re all just going to leave the bullshit in [year coming to a close]. It came from a real place, though. The confusion that followed my sister’s death left me reeling. It left me feeling like there had to be some rulebook for life. I constantly worried if I was grieving “correctly” (there’s no such thing) or if I was living “correctly” (unless you’re harming others, again, no such thing). Point is: I was done constantly evaluating and re-evaluating every single step. I wanted to try to live more in the moment and do what I needed to do to be happy with myself and my life.
This year has been transcendent in many ways. I’m finishing the year in a better place than I could have imagined. So much better, in fact, I was driving home from work the other day with a feeling of unmitigated joy. As the feeling of joy washed over me, I naïvely, genuinely asked myself: “Am I…happy?” On Christmas Day, I felt joy and connected to my parents more than I ever have. For so long after Alyssa’s death, my relationship with them was tinged with a feeling of dread. I was constantly tiptoeing around their emotions, making sure not to joke too much so I didn’t sound callous. As I’ve realized the depth of their grief and their love for their children, my love for them multiplied. And then, the week leading up to Christmas, I tried an ugly ass shirt on at Old Navy. My mom looked at it and said, “No way in hell your sister would let you wear that.” Immediately, I joked, “Well she isn’t here to stop me, now is she?” My mom laughed and teared up all at once. Gallows humor has always been the way for me. It’s dark but it’s real.
That joke was a culmination of the lessons I’ve learned this year. The grieving process has taught me a valuable lesson about life. I wrote in my last newsletter that there is no “real life.” It’s either all real or none of it is. When life is impeded by death, we stop and think about what’s important to us; suddenly, our superficial insecurities mean less and less. But death isn’t an impediment to life. It’s all a part of the story. While the reverberations may be infinitely more, the way life is impeded by death is not so different from the way your day is impeded by unexpected traffic. When I joked with my mom about my sister not being there to make fun of my shirt, it was more than a simple joke. It was a way for me to acknowledge to my mom that my sister is here even when she isn’t. I made that joke, though it was sad in essence, because I knew it would elicit a chuckle out of my mom, and I know my sister laughed wherever she is. It was sad and it was funny. The truth is: Life does not have to be as complicated as we make it.
I have a theory about what happens when we all reduce life to its simplest form: Life is about others. It’s about the relationships we make and the conversations we have. Life is made more vibrant by others. Humans have evolved and become the pinnacle of the food web because we are capable of collaborating with others. The world is made a better place when we try to work with others and make it a better place for others. Writing is the most solitary activity I do, and yet, I’ve realized my writing is about others and it’s when I feel more connected to humanity than ever. I write because I want to put into words the feeling I get when I think about humanity and my relationships with others. I write because I want to express others the human experience and put into words how cool being alive is. For all the many moments we are awake, it’s sad to realize how little we actually spend being appreciative that we’re alive at all. Life is not always easy, but it’s simple. Whenever we’re feeling down, the most immediate thing that can make us feel better is doing something for somebody else. Buy somebody’s coffee or shoot somebody a nice text and I guarantee that hit of dopamine will cheer you up, even if it’s a little bit. Keep doing it and it becomes a habit. Goodness is a habit and a lifestyle.
This year, I spoke publicly more times than any year before. I gave a Keynote speech at a CF Research Conference, I gave a speech to over 700 hundred CF Foundation employees, I spoke on Capitol Hill, and I spoke at a few family education days. I’m proud of myself for those speeches. They really are great accomplishments. But the core messages of those speeches had little to do with me. In those speeches, I emphasized the extensive link we all share as humans. I shared the importance of storytelling—of learning to tell our stories and amplifying others’ stories along the way. Storytelling binds us and it deepens all of our abilities to empathize with one another. Every single one of us can learn something from each other.
I’m ending this year with a sense of calm I’ve never known. I believe in my ability to handle life as it comes. Life has never seemed simpler. Though it can appear complicated, as long as we do the work—wake up, attempt to be our best selves, and continue to grow along the way—it is simple. There is no good reason to ever be mean. When we look out for others, we are looking out for ourselves. And when we are working in our self-interest to be our best person, we’re also looking out for others. We are better for others when we are the best we can be.
The last few months of 2019 have hammered this message of the importance of others more than any other phase of my life. In November, I began Trikafta: A drug that could genuinely add decades to my life. A few days after beginning it, I was sick with some bullshit GI issues. One evening, I was asked to go to dinner with some friends. I almost had to bail due to the pain but decided to push through. Turns out, Alli, one of my absolute best friends, had planned a surprise celebration for me to celebrate Trikafta with a bunch of my best friends. I was in agonizing stomach pain but felt the happiest I’d been since my sister died; another reminder that we are capable of holding two conflicting emotions at once. I was shocked to see all the support and how excited everybody was for me. It was the most excited people have been for me since before my sister died and it was a reminder to me how many people I dearly love I have in this world. For as empty as I’ve felt without my sister here, the hole is getting smaller as my other relationships grow.
I want to acknowledge a few accomplishments of mine from this year, but only because they further this message I’m trying to encourage into the new year. Early in 2019, I began leading an advocacy initiative (I can’t share too much about it yet). This advocacy initiative is led by and for patients with chronic diseases. With this initiative, we are guided by the belief that patients in the chronic disease community are united by more than we are divided, so instead of several different committees dedicated to specific diseases, there are panels dedicated to certain issues. The goal here is to make the world a better place for all people with chronic diseases and to come together as a united front. I’m so proud of the work we accomplished in 2019 and what we’ve got planned coming into 2020.
On top of this advocacy initiative, I also got involved in CF Roundtable and did some other advocacy work that I’m not going to share too much about. Finally, three and a half years after graduating from college, I’m in a place where it seems like all my strengths and activities are merging together. It’s incredibly exciting to think about. And lastly, my writing has grown exponentially in the last few months. This newsletter has reached 300 subscribers already and I have tons of ideas for the next few months. Through the advocacy work and my writing, I’ve met and developed relationships with people across the United States and around the world. I’m looking forward to traveling and meeting more and more people as we build a worldwide coalition. My hope with this newsletter is to build a community of people to bond and communicate and further the important reality that we’re all in this life thing together.
The profound sense of calm I’m feeling about life right now is the greatest accomplishment of my life. I understand I will never feel entirely whole again without my sister. But part of the beauty of life is that we were never really whole to begin with. As we grew up, things happened and we adjusted and we recovered and we pivoted. As we get older, that’s still true. There are lessons I’ve learned in the aftermath of my sister’s death that I will continue to better understand and talk about as I keep writing. I write because I want to continue developing relationships and my understanding of life and the world. Even though it has been dark, I am better because of what I’ve learned since Alyssa died. And the best feeling of all: My sister would want me to find happiness. She would want me to be okay with life and to continue moving forward in the face of it all. She wouldn’t want me sulking. She would want me to do what she did best: Roll with the punches of life, remain resilient, and trudge forward.
I hope, no matter the year you’ve had, you know there are others that want to be there for you. There are people that love you, that care about you, that support you. There are strangers you are bound to meet that one simple act will improve their day; there are strangers that will do a random act of kindness for you when you’re sad with zero expectation of return. I hope you’re able to reflect on this year and realize that every difficult and bad thing that happened is a chance to learn a lesson and develop wisdom about life. They are chances to develop grit, strength, and resilience.
I’m optimistic about 2020. I’m optimistic about life. I hope 2020 brings you joy and happiness and a sense of calm about life and your way of approaching life.
Life is pretty simple. Be good to others, and you’ll be rewarded, even if it’s only a better sense of who you are.