My first birthday without Lyss

On the day I shared the piece I wrote about the one month mark of Alyssa's passing, I came home from work in a relatively good mood. Writing that piece was cathartic and I felt like some good came out of reflecting on the one month mark. Then once I came home, my parents told me that my dad found an unfinished letter Lyss had written us a couple of days before she basically became unconscious. It contained a lot and it was really painful to read. The quote below was particularly hard to read from my sister.

You shouldn't have to remember me, we should be sharing memories together for the rest of our lives... I want you to continue doing great things and making a name for yourself. I know you will.

For obvious reasons, no matter what the letter contained, it was going to be painful. These words were likely to be last words I'd ever read in her voice again. Writing is such a powerful medium for me because what I write will live long on after I eventually die. Reading Alyssa's words further escalated my guilt and my struggle. In Alyssa's last five weeks – and really, her last five years – she had to contemplate her life and what was going to come after her death for us. I now have this inescapable feeling that she is trapped in that mental state. I can't imagine how intensely painful it must've been for her to write those words. I have written a lot of painful words in my time, but I have never had to write a letter to my loved ones telling them my wishes for them after my death. 

Alyssa's words in this letter were lucid, well-written, and in her distinctive voice. I could hear her speaking the words to me, even though I can't clearly remember her voice right now. I could feel her presence. The process of making memories without her is difficult, agonizing, and full of guilt. I still feel guilty laughing, smiling, or even a general feeling of hope, though I fully know she would want me to be living life as best as I can in honor of her and bringing her along for the ride.

So how do I do that? How do I live life without the overwhelming sense that living life is somehow disrespectful to her? I don't have the answer to that. I've struggled with generalized anxiety for a while now, but all day yesterday, I had this widespread unease. I kept having feeling hopeful that I'd see her post a picture of us with a nice little message like she always does. I felt bad opening cards and gifts without her. I hated her not being there for dinner.

And yet, at different moments, I did feel a sort of comfort. I received a few nice messages that nearly brought me to tears. I went to dinner with my parents and a group of the guys. Maybe that will become a new tradition. I consider my guys to be as close to me as brothers, and even though they aren't blood brothers, maybe them being there was a way to fill the void of losing my sister. I feel that my experiences with CF and losing Lyss have helped me knit these tightly held relationships with so many people that can never be unwound. I consider that to be something to be thankful for. 

So many people loved Alyssa. Through their support through this difficult time, it's been clear to me how many people I have on my side. My birthday, although it felt incomplete without Lyss, reminded me that I have an army on my side to navigate this new life. Losing Lyss has felt like a post-apocalyptic hellscape where my parents and I have been climbing through the rubble. Making it through my birthday and feeling okay about it feels like a bit of a sunrise.

I've long wondered if it was narcissistic to want to be a writer. Writing is different than other forms of art. Aspiring to become a writer makes the assumption that people care about your words and what you have to say. I believe I have a unique voice and I hope to use that voice to encourage people to think about parts of life and life itself. I finally realized yesterday that my inclination to being open and writing about my experiences is unique enough that I can do positively with it.

I will continue to write in honor of my sister because she believed in me and my goals as a writer. Without Lyss, I wouldn't have the courage to write about what I'm going through. She said we should be making memories forever, and truthfully, I believe we will be, through the impression she left on my life and the way she lived her life forging the path ahead of me. That's the best gift she could've ever given me.