I remember sitting with my cousin Maria in her living room during her phase where she was obsessed with the musical Rent. It’s one of those weird memories that sit dormant for some time before being summoned upon a trigger. In my case, it was when I was watching The Office episode where Michael is finally leaving and the cast sings to him a rendition of “Seasons of Love,” edited to make it fit his life (he loves Rent). I remember being a typical boy, hesitant to admit I enjoyed a song from a musical, but there was something special about the melody paired with that phrase “Five hundred twenty-five thousand six hundred minutes” and its significance. The uplifting yet nostalgic chord progression coupled with the seemingly innocuous and cheesy question How do you measure a year?

There’s something strange and ephemeral about how that song, which seemed to mean nothing when I was a kid other than it being a catchy tune, has become something that wrenches my heart. (I also adore The Office so their rendition of it also rips my heart up too.) 

Looking back, I don’t think I give myself enough credit for the curious kid I was. Maybe I was already conditioned to think about the meaning of my life more than I realize. I was already aware of the life expectancy for people with CF, so it’s possible that the jarring concepts of finality and fragility of life were already deeply embedded in my young mind. It is possible that I was already questioning about how best to spend my time and enjoy my life; already wanting to maximize the time I had on earth. 

The funny thing about The Office version of “Seasons of Love” is that it is more symbolic than what probably comes across at the surface. The Office is a deeply human show – the characters are portrayed as flawed and deep foils of ourselves. In fact, they are us. In that scene, the cast sings about how they’ve forgiven Micheal for the many inconsiderate and stupid shit he did over the years because they realize he was just doing what he thought was right. They reminisce about his quirks and the characteristics they loved about him, as well as the lovable downfalls due to his overly excited personality. 

In the year since my sister died, we’ve not spent a single night in the hospital. We’ve not spent a single moment worrying about her blood results, her health, or how she would be feeling in the near future. By all accounts, my parents and I are healthier than we’ve probably ever been. In these ways, our lives have obtained a bizarre sense of stability we’ve never known before.

My life has changed dramatically in many ways. I am an actual paid writer. I have been on committees and become exponentially more involved in the CF community. I have become a voice that people listen to and I take that very seriously (I don’t want to sound cocky admitting this, but acknowledging it means I’m careful about what I say). I have worn my heart on my sleeve in order to show what grief can look like for people, especially since we live in a culture that doesn’t exactly promote public grieving or mental health conversations. It also should be said that men aren’t encouraged to be particularly open about their emotions, which influences me to be honest and authentic about my feelings. 

I am often told that my emotions are valid and acceptable and that time isn’t supposed to heal Grand Canyon-esque wounds quickly. But I am expected to move forward every single day because, no matter what anyone says, I don’t have a choice. I have to work. I have to keep going – For myself, for my parents, for my dog, for my friends, and ultimately, for my sister. I can choose to spend the entire day in bed, but I know that my job can only accept that for so long. 

I don’t want to quit life. My depression is mostly kept in check, though it, combined with anxiety, are still daily battles. I am constantly wondering if I’m doing enough, because maybe, just maybe, a bit more advocacy efforts or anything else will cure the ache in my heart. I wonder if I will ever be satisfied, if there is anything in the universe that will make me happy. Somehow it seems like forever and yesterday all the same that I watched my sister die, eulogized her, and then proceeded to mourn her amongst hundreds of friends. In the days after, I was blanketed in support from people close to me and people that I didn’t know because my sister touched their lives. I felt that her life ultimately changed the world for probably thousands of people. I felt okay, that I would always remember the difference she made and the love I felt in those days.

But people move on. Grief affects the departed’s family the most, but as the microscope zooms outward, people are affected less and less, which is how it should be. I feel sadness every single day when I think about my sister. I feel guilt when, in moments directly after a good experience, I remember that my sister is gone and I will never see her again. I feel intense rage when I think of the suffering she went through every single fucking day for so long. I want to believe her spirit is real, present all the time. I want to be optimistic because I know my parents read every word I ever write. I fear that my frustrations, which I don’t openly vent about to my parents, will worry them endlessly. After all, I’m supposed to be their healthy child. 

I’ve started to forget her voice. I’ve started to forget the quirks about her that made me laugh and also the quirks that annoyed me as sibling’s quirks often do. I realize this ability to forget is actually what makes it possible for humans to handle tremendous emotional pain. If we were unable to forget anything then we would never be able to grow, move forward, or survive. I don’t want to forget her though. It isn’t fair to her, though it may be necessary for me. 

As long as I can remember, I knew I would live years of my life without my sister. Humans are weird creatures, though. The human mind is capable of realizing something, but the human heart or spirit or soul is capable of pushing that reality so far into the future that our minds are convinced otherwise. One conversation I’m absolutely terrified to ever have with my parents is if they’ve pictured their lives without me. The realist that I am assumes they have. When I was born, it would’ve been hard to envision a timeline where I’d outlive them. As much as I’d never want my parents to have to grieve me, that timeline may exist, and a part of me fears I’m confined to a fate of grieving all my loved ones that I care most about. 

Back in late November, after Thanksgiving, we were driving home one night and my mom was sad about Alyssa. Through tears, she said to me, “I know you will outlive me and dad.” In that moment, my heart, shattered already, managed to shatter twice over. The most important woman in my life, having gone through a parent’s worst nightmare, has to spend time praying and hoping she will never have to go through that experience ever again. 

I’ve spent more time than I should wondering about my legacy. The thought that one day we’re here then one day we’re nothing more than the wind frightens me. There are days where I can’t fathom that my sister is just not here anymore. I don’t want my sister to be forgotten and I know she will not be for a very long time. She was a special person. And yet, as hard as life is, there are moments when I realize there is nothing better than existing.

No matter what happens, it is one of the fundamentals laws of the universe that time will march forward. It doesn’t feel like it’s possible that it has really been a year without Alyssa. As I reflect on the last year, so much has happened. A lot of really positive things have happened in my life, likely due to my sister’s legacy of being open and honest about what we are going through in our lives. Every single day for the last year, I have awoken to a terrifying nightmare world without my sister. As each day goes on, I have to remember how hard Alyssa’s life was for so long, which does somewhat help to mitigate the pain I feel. It is possible for us to feel happiness in knowing we’ve used our pain for good, while also recognizing how much we miss our dearly departed. Grief is a personal experience that really does not make sense.

I admit that every single day, I wonder if I will ever be able to do enough to feel truly unburdened by my grief. I worry that nothing I ever achieve, any peace I ever feel will be able to alleviate mine and my parent’s sorrows. I’m not sure if I want to be totally alleviated of my grief. Not feeling sorrow would imply I’ve moved on from my sister, something I never want to do. I guess all I can really do is make sure I’m giving myself peace, ensuring I’m loving the people that mean so much to me, and living the life I want to live in Alyssa’s honor.

I will rest a little easier knowing Alyssa would be proud of me and my parents. I am so grateful for the family, friends, and support system I have. Thank you for being there for me and giving me the confidence to write through my life. All the love in the world to all of you.

TL