In October I gave a community wide talk about cystic fibrosis at Tuck where I mentioned Lea and her impact on not only my life, but also the cystic fibrosis community. I had been at school a mere two and a half months at that point, and I can tell you that I don’t think I ever imagined tearing up in front of a brand new cohort of friends and peers while I was just getting to know them, but I did.
The talk was about my tough years leading up to Trikafta’s approval. It was intended to introduce CF to a new community and show much of what a lot of us go through as we spiral towards end stage illness. When I mentioned Lea’s name, though, an emotion like I had never felt washed over my entire body.
I speak publicly about her quite often. It’s a goal of mine that the world knows her name and her fight, but this particular time, I felt something almost indescribable. It was pain, sadness, hope, triumph and power all in one hairsplitting moment. It was as if she was there with me.
Darcy was sitting in the front row and immediately burst into tears. She felt it, too.
I took a deep breath (a new feeling that I’m still getting used to) and continued with the talk, only to be emotionally drained by the time it was over. It was a surreal blur.
When Darcy and I got home later that night, we knew both of us had experienced something that we never thought possible.
Tomorrow is the one-year anniversary of Lea’s death.
I think about Lea quite often. There will be days when I’m walking through downtown Hanover only to be stuck in a gaze as her bright smile shows up on a store front. Or I’ll be starring blankly at a homework assignment only to hear her voice from an old podcast episode.
Initially it was hard to call on the memories of her before she got super sick. I tried and tried and tried, but I couldn’t place her out of the hospital bed with that godforsaken mask on her face.
As time went on, the memories of her in pain began to fade, and I saw her more and more with the classic smile on her face, or running through Disney World to see Tiffany, or holding a sloth at some random petting zoo, or one of the 24,000 times she made me laugh to the point of a mucus puke on a Skype call.
Remembering the Lea we all knew and loved before her final days is the memory of Lea that I want to survive an eternity.
Coping with loss has not been easy on me. I was irritable in the months after Lea passed, and even this week as we’ve approached the 1-year mark of her death, I caught myself barking orders from the intramural hockey bench – something completely unlike the personality that I pride myself on. I know when I feel those moments of anger and grief, I have to rise above them and work to be a better person because that’s what Lea would expect of me. I’m still working on it.
I know I have grown since Lea passed, too. I use her smile and the way she used to talk about her struggle with CF at the very end to inform decisions I struggle to make. There is something about the bond that she and I shared through our common fight with cystic fibrosis that allows me to feel like I would know what she’d want out of this world. I know she would feel incredible pride in the transition our community is going through, but I hate so very much that she missed out on it.
It haunts me, still today, that one of the last things she said to me was, “I can’t believe I got this close.”
I have worked to take the bone crushing pain from those words and turn it into a motivator so no other person with cystic fibrosis has to feel like they “made it this close,” but it has been hard to do.
I look ahead at the daunting work that we still have to do for people with cystic fibrosis and other rare diseases, and I know we are going to continue to lose more of us along the way. I really do believe, though, that it is up to us to make sure our community members do not leave us in vain. We must, as survivors, honor, cherish and celebrate past lives as we charge into the future.
I hope they (wherever they are) look on us with pride as we take one giant leap after the next into a future that most of us could have only dreamed of. A future that Lea so desperately wanted, but never got a chance to live.
I want us to forever remember the people who never had this second chance at life with cystic fibrosis. We cannot forget them.
I’ll never forget you, Lea. I know you’re there with me, and I hope I am making you proud.
Lea’s family is doing an amazing job honoring her legacy with the Lea Marie Faraone Foundation. Check them out!