Today’s newsletter is about my trip to Vermont in June when I gave the Keynote address for the CF Foundation’s CF Research Conference. I’m missing my sister really badly right now. Grief hits like that, but writing about this helps me to explore the complicated emotions regarding my achievements since her death.
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Stowe, Vermont; June 23rd, 1pm Eastern Daylight Time
I’m standing near the summit of the tallest peak in Vermont: Mt. Mansfield. The wind is gusting, visibility is mostly clear with the sun out and blue skies, punctuated by occasional poofs of airy clouds. I can see what I think is Lake Champlain? Is that the direction of Maine, or of Canada? Somebody had mentioned Lake Placid is near, too, I think? It becomes evident to me that my geographical perception of northeastern America is lacking, but oh well.
Vermont is exactly as I envisioned it. And yet still more beautiful when seeing it in person. Where I stayed was a world away: two flights followed by a 50-mile drive through mountains, folksy towns, lucidly lush, green tree-lined roads. The people in Vermont were some of the kindest people I’ve ever met. The forty-eight hours I was there flew by. Still, I felt like I did so many things.
As I stood in one of the most beautiful places I’ve ever been, panting due to thin air and a rushed heartbeat, the last 25 years of my life crystallized in front of me. The geography in front of me felt humongous, accessible, open. It mirrored my life going forward. A million-pound weight rose — no, floated effortlessly — from my shoulders.
Kentucky; The week of March 12th, 2018
When you’re in the depths of grief or depression, an open world with possibility feels as far off as the end of the universe; It is unimaginable, unachievable, undesired. When you’re at the top of a mountain, the path behind you, the path already traveled has been etched into history. If I can surmount that, what else can I do?
In the days leading up to my sister’s death, my world hung in the air. I was wishing that I could just begin the process of grieving before she was already gone. As I watched my sister die, I felt a visceral sense of dread. My life was being irrevocably split in half. For so long, I struggled with my own happiness. My happiness was a bargaining chip. I was nearly convinced that in a past life, I accepted a devil’s bargain: Stable physical health in exchange for never experiencing true happiness. I struggled as I watched my sister spend day after day feeling like shit, incurring physical scar after physical scar, mental trauma after mental trauma. It was not lost upon me that this is possibly the life I may one day have to experience. The mental burden of watching my sister’s flailing health for two decades was my punishment for being healthy. As she experienced such physical agony, I was characterized by mental anguish. That was only fair. How does one look forward to a life confined to scarred lungs as they filled with mucus inhabited by antibiotic-resistant bacteria? I believed my circumstances made me stronger. What could be worse than watching your best friend — the one person in the universe that you feel like you can genuinely relate to — die? What could make you stronger than going through such a horrible tragedy?
It was in the days after her death that some important seeds were planted. My family was surrounded by immense support and social media saw an outpouring of kind words about my sister. People shared their stories of experiences with Alyssa over nearly 30 years. Many said they found inspiration in my sister’s relentless spirit, always pushing forward no matter how much pain she was in. Some mentioned how they adored her candor about her experiences, particularly when she felt bad but still shared pictures of her looking upbeat. Of all her passions, her love for fashion was the most talked about. The week after her death solidified one of my long-held beliefs: Humans are inherently good. They want to help, to support, to show love. Sometimes it takes tragic circumstances for that to show, but the important point is that it is shown.
The other, possibly more important, seed that was planted that day: Life is short and we need to find a way to maximize our days. For two years before her death, I didn’t call myself a writer. I hesitated to share my deepest thoughts on heavy topics like death, spirituality, life, fulfillment, grief, or mental health. Although these topics were important to me and I had already spent so much time thinking about them, I felt I was too young, too naïve, not quite damaged enough, to share them. Once I accepted that my trauma was real and how my experiences had transformed my world in uncommon ways, I stopped being afraid that people might dismiss me. That was up to them and clearly people could make their own decision, but I needed to do what I needed to do to be content with my life. I needed to make sure I continued my sister’s legacy and part of that was learning how to proceed with my life.
Things didn’t change overnight. It still took time: I wrote pieces that went unpublished and published pieces that went unnoticed. My friends and family believed in me, but believing in one’s self is the most important part of the recipe.
The week after Alyssa’s life and that weekend in Vermont are inextricably linked in my life. Back then, no one could’ve convinced me that I would’ve had the courage or optimism to fly to Vermont and speak to a room of 150 of the most prominent CF researchers from across the world. In the audience, and seated next to me at dinner, were the current CEO of the CF Foundation, the incoming CEO, the chair of the board, and a few other senior directors. Speaking candidly in front of this audience was one of the proudest moments of my life and one of my biggest achievements.
My talk ranged from my personal life with CF, why my parents inspire me so much, some of the toughest parts of Alyssa’s life, the mental health burden that comes with CF, my dating life, science at large, and my experience in the lab. I joked with the crowd that I was thankful for them for two reasons: The amazing research they do, and for providing me a stage where I could talk to 150 therapists listening to me bare my soul. This version of my life doesn’t exist without the week after my sister’s death where I was shown the power of the human spirit and the world around me — and the future that I had just lost — convinced me to allow myself to begin living.
In the second act of my life without my sister, I’ve had many weeks where I’ve felt generally okay and many weeks where the most difficult task in the world was rolling out of bed in the morning. There have been times where this all feels for naught and also moments where I feel more alive than ever. I’ve learned how to balance these two extremes in the most human way possible: By sitting with them. They are natural emotions and it’s taken some time and the support of a mental health professional for me to recognize I am not inherently flawed for feeling this way.
In Vermont, I stood on three mountains: The first was Mt. Mansfield, the second was the platform at the CF Research Conference, and the third was the peak of my life since I lost Alyssa.
The world around us is beautiful and expansive. We are stronger than we know. I am thankful to be alive. I am thankful to have had almost 24 years with my sister. I’m lucky to have the lessons she taught me about life, fulfillment, believing in myself, and perseverance.
Life is inexplicably hard at times, but it’s also the most beautiful experience. We come to believe there will always be another day for us to enjoy the weather, to start a new hobby, to have quality conversations with friends and family, to take that trip.
It isn’t until we learn that there won’t always be another day that we can begin living the life we deserve.
Because there won’t always be another day.
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