As I reflect back on the last vacation we took as a family – a spur-of-the-moment trip to Los Angeles – I knew Alyssa wasn’t fully there. We took the trip less than two weeks after we got the news that there were no remaining options, including ruling out retransplantation, for Lyss after this bout with chronic rejection; this was, in the barest of terms, a death sentence, and Alyssa knew it. The day we got that news, we were huddled together in a Lexington hospital room on January 31st, 2018. I think we all knew the news was coming, but hearing it is so entirely different than thinking it. Alyssa buried her head, surely overwhelmed with the future laid in front of her. My mom sat speechless as my dad and I absorbed the news, grasping for straws in any way we could. Forgive me for my memory being opaque, but I believe I mentioned something about how long we could keep her stable, and I think one of us inquired about retransplantation options elsewhere.
We knew what was in front of us, but for the first time in our lives, Lyss’s fight felt…over. How do you fight when there’s nothing to fight for? What is fighting at that point? Is it preserving quality of life for the most days? Or maximizing life, no matter what that is? Lyss didn’t want a trach or vent. She wanted to be coherent. We knew what that meant for the future.
I don’t know if I speak for my parents here, but for me, this was the only time during Alyssa’s life that I felt like our fight was opposite one another. Alyssa had to directly confront death as it barreled toward her with nothing else to look forward to. We had to abstractly confront death, to confront the absence of Alyssa, fearing only the pain that would overwhelm us after we lost her. When I look back at her final days, I think about how simple my fight was because it wasn’t a fight at all. My sister had to prepare for the coming of death, the most ghastly of experiences that we all inevitably lurch toward; probably the only experience that every single one of us will share as a species, aside from birth. I had to wonder how I was going to move forward, something I’m still confronting.
The fact that my sister has passed away is still existentially gripping for me. I’m not going to pretend that I don’t think about death all the time because I very clearly do. I’m fascinated with it, but it’s still an abstraction in my life. My sister wasn’t like me in that way so I don’t know what thoughts went through her mind. All I can say regarding all of this: death is scary as shit. The concept of existing one moment and then not is just something my mind can’t possibly fathom. Whether you believe in an afterlife or a deity or not, it doesn’t change how unfathomable our very consciousness is.
All of this is to say that our experiences are moments that are intensified – maybe even defined – by who we are in those moments. My sister and I, we dreamed of moving to LA. This was one of the those things we shared and obsessed about together, both of our eyes lighting up at the thought of spending our lives in the wonders of Southern California. When I started DJing, Alyssa always told me she would style me when I performed at Coachella; I always told her I would help her write whenever she inevitably became a fashion consultant. But our LA trip didn’t mean anything to her. How could she enjoy it? She knew she would never move out there, that her 29 years on this rock were coming to an end soon, and she would never accomplish her dreams. I both loved and loathed our time in LA, embracing the warm air while knowing that whatever future I had, in LA, Cincinnati, or elsewhere, was going to be without my sister by my side.
In a healthier life, Alyssa would have been a fashion consultant, designer, blogger, interior decorator, and event planner. She was so special at these skills. For me, all of my skills and knowledge have come through meticulously learning through books and practice. I really don’t know how Alyssa became as good as she did at what she did, but she was so talented at it. It broke and continues to break my heart that she never got a realistic opportunity to pursue that. Whenever I get married, I’ll get married that day knowing the wedding just won’t be as beautiful without my sister’s talent.
This past weekend was my cousin Jenn’s wedding. Jenn and Alyssa were best friends, close in a way that I can’t describe because they shared a relationship that Alyssa and I didn’t have (which is an okay thing of course!). My sister was funniest around Jenn and the cousins. (Side note: One thing I always admired about Lyss was her ability to be positive and light-hearted whenever family was around, no matter how she was feeling. She never, never wanted anybody to feel sorry for her.)
In a fitting tribute, I was honored to be able to walk down the aisle in my sister’s place, wearing a fly ass suit that Alyssa would have been proud of, carrying a symbolic rose. Jenn’s wedding was an event Alyssa desperately wanted to be a part of, and I know it devastated Jenn and Matt that she wasn’t able to be there, just as it devastated all of us. But in some ways, I feel as though this was fortunate.
As I mentioned above, I believe our experiences are defined by who we are in the moment. Something I’ve learned about life is that you can’t be angry about the circumstances you’re sometimes thrust into. Instead, I try to reflect and look at the many possibilities that could have happened. It seems that the circumstance that ends up occurring is so often the one that’s most perfectly in the middle, not necessarily “average” as in mediocre, but rather the beauty of it is perfectly mirrored by the pain associated. Don’t get me wrong, I definitely believe that things can go better than they do, but with the benefit of hindsight, I think we can see how the pain that came with the journey opened up the opportunity for beauty to show itself. If you know me, you know I’m not one to always see the beauty of life; in the moment, I can be cynical, irritated, annoyed, whatever, but when I reflect, I can see how things tend to work out well even if we don’t realize in the moment.
For my sister, the LA trip was representative of her last trip, the last of our family trips, and of a life that never existed and never will. I can’t imagine how any person in her shoes could find the beauty in that. For me, the LA trip represented a future that is still possible for me, a future where I’ll try to bring my sister along in whatever way I can. Even though she wasn’t herself, I will forever hold that trip dear because for those couple of days, I felt like we didn’t have to rush back to the reality; those days permanently suspended in my mind as the last figment of normalcy I’d ever experience with my sister and my family as a whole. I knew what that trip was when it happened and I chose to view it as such, which is why I believe the experience is defined by who I was then: Alyssa’s little brother, knowingly clinging on to the last family vacation.
When I think of the possible paths Alyssa’s life takes after that trip until Jenn’s wedding, I see only a few possibilities:
the one that happened: she didn’t make it but a couple of weeks, which gave us half of a year to grieve;
she survives longer, maybe giving us more quality time with her, maybe not, possibly prolonging her suffering and shortening the gap of grief to the point where the wedding is harder the shorter the gap;
she survives until the wedding after seven more months of chronic rejection, meaning it’s quite likely she’s on oxygen all the time. In this scenario, she isn’t able to be a part of the wedding as much as she liked, from helping set it up, to walking down the aisle and dancing. She had spoken to us how sad she was that she wouldn’t get married; in this scenario, that sadness is magnified.
I hope evaluating life like this doesn’t sound callous, but this type of examination allows for us to reflect and learn from life. Of course Alyssa wanted to be a part of Jenn and Matt’s wedding and I wish she could have been there for both of them. But I feel some solace knowing we had a decently long amount of time to grieve and adjust our lives a bit before the wedding, and I feel some comfort in knowing my sister no longer has to feel sad that she won’t get married.
To add some sort of poetic justice for her little brother nagging her so much over the years, I was the one that didn’t feel well this trip. Thursday morning, I was having significant abdominal pain and was worried I had a bowel obstruction. The pain was so bad I actually had to leave the rehearsal dinner – one of the first times I’ve had to leave something due to not feeling well in quite some time. I thought back to all of the times I pushed Alyssa to deal with her pain and be there for some event, thinking I was being a tough little brother and not realizing maybe I was being a bit unfair. I tried to channel her strength, but the pain was becoming unbearable. It made me realize how much my sister pushed through to make it to so many events in her life. It was yet another learning lesson in a long series of learning lessons. I know she wouldn’t be mad at me, but instead laugh at me and tell me “I told you so.” Such is life, I suppose.
There is one other moment I want to talk about specifically. During the reception, Matt’s best man Mike was giving a speech. My mom had told him a bit about Alyssa and Jenn’s relationship so he could talk on that. As he spoke about Lyss, I made eye contact with Jenn and Maria, all three of us with tears streaming down our face – the only tears I shed all weekend – and in that moment, I felt Alyssa’s presence. I know Alyssa was there with us this weekend. To be honest, as much as I miss her, I really feel like she’s always around. I feel it when I write these pieces, and as I write this sentence, I think it’s because I know she’s reading them as I write them, so it feels like I’m writing letters to her all the time.
It didn’t hit me until a few days after the wedding that Jenn’s wedding fell on the seventh monthaversary of Alyssa’s passing. After six months, I told myself I’d stop writing monthly tributes to Lyss. I told myself I’d start moving forward and processing the grief in other ways. Maybe Lyss doesn’t want me to stop writing these tributes quite yet.
I’d been excited for this wedding weekend for the two years Matt and Jenn had been engaged. I knew it was going to be a good time. I don’t think I ever envisioned that I’d be the person I was during this weekend, though – a grieving brother, a writer, a scientist, and a person exploring the world so openly and publicly. Because of the person I am now, I feel like this weekend was an important step in my grief process. This weekend was one of the firmest reminders for me that life has a way of moving forward, whether we want it to or not, that we can find ways to be okay, and most importantly, that we can find ways to accept that our dearly departed would want us to be okay ourselves.
