A few nights ago, I googled “Saddest movies on Netflix right now.” I realized I hadn’t sat with my emotions in a while and I wanted to get into a state of mind where I could reflect on the last eighteen months of my life. I found the movie 50/50 starring Seth Rogen, Joseph Gordon-Levitt, and Anna Kendrick. It’s about a guy that goes to a doctor due to back pain only to discover that he’s got a large, malignant tumor deep in his spine. Options are limited to one: chemotherapy to reduce the size of it followed by a risky surgery to resect the tumor. The prognosis isn’t great.
As I watched this man’s life devolve from a life full of bullshitting with his best friend and dealing with typical relationship and work problems into a life full of doctor, chemo, and therapy appointments, aches and pains, and a general sense of uncertainty, I couldn’t help but feel some bitterness. Why is it that we are able to live our lives without much meaning, treating every day as expendable, and constantly pushing off the important things we want to do until the ground is finally ripped from beneath of us?
I look back at the last few years of my sister’s life with a sense of frustration. Lung transplants are not guarantees of life; in fact, they are just a bandaid on a hemorrhaging bleed. Sure, most people that are even at the point of evaluation for lung transplant do not have a great bill of health, but lung transplants are rudimentary without ideal prognoses, all things considered. I knew my sister did not have the brightest outcome after the lung transplant. And yet, during that time, I could never live in the moment. I worried about my sister constantly—it came from a good place in my heart—but didn’t appreciate the time we spend together. I resented that my sister was sick. I hated that she couldn’t live a normal life and that we couldn’t just look toward the future with a sense of comfort or at least stability.
It isn’t great that I’ve spent so much time thinking about that period of my life (I’ve talked about this a lot with my therapist) but I think it raises a valuable point: If I can reflect back on that time and recognize that I wasn’t appreciating life, I can try to be better in the future.
Fast forward to September 2019, the night before my day on Capitol Hill. I lay awake contemplating life, filled with conflicting emotions. I was in a mostly empty—filled only with my necessary belongings strewn across the room—hotel room in a city I’d never been before. A feeling of dread bubbled over me, my thoughts peppered with the same self-defeating voice that’s been present for years; that same feeling I used to feel whenever my sister was sick. I was anxious and overwhelmed as I tried to fall asleep. When I awoke, I was already overthinking what I was going to say to the staffers in my representative’s offices, overwrought with self-doubt and paranoid concerns.
The day went on: I told my story, advocated for affordable, accessible health care and robust funding for the NIH and FDA, and learned about how policy works on Capitol Hill. It was a day of speaking truth to power and hopefully making a concrete difference in a new way.
That evening, I decided to re-tool most of my talk for the CF Foundation. My speech was in front of the entirety of the CF Foundation—all internal members at headquarters and also live-streamed to all of the local chapters nationwide. It amounted to the largest speech I’ve given yet, to an audience of six to seven hundred people, one hundred and fifty to two hundred of which were in person. So what did I—a 25-year-old who doesn’t struggle to do treatments every day but can’t seem to find a routine for cleaning his house or doing his laundry—want to convey to this audience without sounding self-indulgent?
It didn’t feel right to get up there and try to give a talk representing the experience of everybody with CF; there are more than thirty thousand of us in the US after all. Instead, I wanted to convey the most important lesson I’ve learned in this floating existence since my sister died.
That lesson being how important it is that we all have to learn to tell our own story. Our lives aren’t fully realized until we fully realize what we want out of life. One of the best things 50/50 did was when Joseph Gordon-Levitt’s character is first diagnosed with cancer: He dissociates, unable to process anything after the word “cancer.” The world blurs around him, sounds are muffled, and he’s deep within his own head; for probably the first time in his life, everything—life itself—could soon be gone. It isn’t just that life may be altered, but that petty argument he had with his girlfriend or small confrontation with his boss earlier means less than nothing since he realizes how much deeper life is than a single instance, and that it could soon be over for him. Life flashes in front of him.
This sudden shift in the spotlight of life and what we value most usually only happens when our worlds shatter. It can be from terrifying news or from losing somebody. But ultimately, this is when life—as blurred as it appears to be—is indeed crystal clear. Our brains are hardwired to focus in on what means the most to us when we learn the fragility of life. Love is what fuels us.
So what has fueled me to keep going in the aftermath of a life lived with my sister’s presence? I’ve found there are a few joys that keep me moving toward the future. There are small, fulfilling joys: Taking Duncan to the park and sitting in nature with my best friend shows me the complex beauty of sentient life, nature, and the universe. And there are deeper joys: Writing meaningful pieces, strategizing for the future, and giving speeches to audiences provides me with a sense that my life is bigger than my internal mind. These joys fascinate me and fulfill me in different ways, but they both provide me with a sense of hope and a purpose bigger than myself.
When my sister died, my world shattered. I kept asking myself What is all of this for? What is the point of going to the gym, working, writing, living if we’re all dust eventually? The past was transient. Alyssa only remained in our life in an abstract form: Social media, in pictures, in texts, in ways that flattened her life, and in ways that confined her to the past. It was at that point that I was finally struck by an important lesson; If we’re all going to be gone eventually, why live according to anybody but myself? (It should be said that this rationale can be used by people to harm others, but really what I’m saying here is that we have to do what’s best for us, with the obvious condition that we aren’t hurting others in the way.)
I tried to stop obsessing over what others thought whenever I wrote a blog or posted something on social media. I realized how complicated life was in some ways and how simple it was in others. I realized we think other people are thinking about us far more than they actually are. And I realized that life is fucking short. You won’t always get another chance to say I love you, or another weekend to hike, or another opportunity to pursue your dream job.
I can’t say that my writing career necessarily took off but that’s when it began to take shape.
I wrote about my grief and mental health and it seemed to resonate with others. It felt good for me to broach a topic that I feel like needs to be broached more often and to hopefully de-stigmatize it. I began to tell my sister’s story, and then it turned it to being more open about telling my story.
And people wanted to listen. I am grateful that people wanted to listen. That support propped me up and it gave me the confidence to pursue the most thrilling joys of life. It’s led me to getting a column, to giving a keynote speech, and then to spending eight hours discussing strategic plans with ten different departments at the CF Foundation. It led me to believe my voice mattered. Not that it mattered more or less than anybody else but that it mattered at all. Our voices are not at the expense of others (or they shouldn’t be; if you’re using your voice to suppress others, you’re using it wrongly).
My day at the CF Foundation consisted of meetings with many different people. I learned about what is happening there right now, what the future looks like, and I provided insight on what I think they could do better in these different departments. For years, I’ve worked in CF—in science, in local advocacy, and on other projects in the CF world at Children’s and with the CFF—so Friday was the culmination of literally years of work. I felt like I was in my natural element all day.
It was also surreal to have my parents, my cousin Maria, and my Aunt Gina with me there for my speech. It was obviously great to have their support, but it was surreal for another reason. During the question and answer portion of my speech, my parents were asked a question, which then led to my cousin and Aunt chiming in as well. My story is not just mine, but also my family’s, my friends’, my colleagues’, and even my readers’. My cousin Maria told me that her friend said that everything our family does “is a production.” Alyssa would have agreed.
If I had to express life and the last eighteen months in one sentence, it would be this:
Life is made interesting and fulfilling by our relationships with others and the world, and one of the best things we can do in life is learn to tell our stories and learn to listen to other’s stories.
When I look back at the few months after Alyssa died, my world was about so much more than the daily bullshit we all struggle with. I took things less seriously, I worried about others’ opinions less and less. And eighteen months later, I feel like I’ve forgotten that lesson; that life is so much bigger than that. We get one chance at this. We must capitalize on it.
Thanks—to the CF Foundation and to those of you that read my work on CF News Today and on here—for giving me the chance to tell mine and my sister’s story. I’m eternally grateful.