I had just gotten out of traffic that seemed to exist for no reason at all when my sister called me to tell me what the biopsy said. I was on my way home from the gym to get ready for The Cold Boys Friendsgiving (we call our group of friends The Cold Boys). Her lung function had been steadily decreasing for over six months – one of the telltale signs of chronic rejection. I had tried to ignore what seemed obvious. The biopsy came back negative; Alyssa wasn’t in rejection.
My eyes welled up as I slammed the steering wheel. I knew this was a false negative. I knew the evidence – the majority of the time biopsies can’t accurately determine if a patient is in chronic rejection, they can only really definitively determine acute rejection. I knew what was happening – Alyssa wasn’t really feeling better, so the signs didn’t point towards her being out of rejection. It was clear to me that she wasn’t out of rejection, but rather, the biopsies didn’t indicate acute rejection. It seemed clear to me at this point Alyssa was absolutely in chronic rejection.
I was furious. Why were we being told that Alyssa was in the clear? Alyssa wasn’t happy about the results, or at least she didn’t seem to be. I’d venture to say that’s because she knew, too, what was happening. I sobbed as I felt an inexplicable blend of emotions. I’m not a transplant doctor, so maybe I’m wrong? Maybe she’s out of rejection, maybe her lung function is just down, but it'll bounce back soon enough. They told us she's out of rejection; if she was in chronic, wouldn't they emphasize that? I am wrong; she's out of rejection and we need to be thankful and look towards the future. I should be ecstatic.
For the next few days, I buried those feelings of doubt and managed to suspend that lingering suspicion long enough to post the following picture with a caption that read:
“We received the overwhelming and fantastic news that Lyss is out of rejection after 4 months of photopheresis!!!! (She still has to continue treatments.) It’s really hard to overstate how incredible this news is. As I’ve gotten older, I’ve become more & more aware of how important it is to stay in the moment & appreciate the moments as they come. With news like this, I like to reflect & recognize how fortunate we are at this current moment. At any given moment, we can be overwhelmed with a series of bad circumstances & I think finding the good, as small as that good may be, is critical with moving forward with our lives & becoming stronger as we move on. So to celebrate, here’s a picture of me making fun of Lyss always making model poses in every pic. Love ya sista!”
The subtext is clear in that message: I was trying to convince myself we had just gotten a win, but I knew in my heart that we had only received a bit of time of blissful ignorance. I remember being frustrated that Lyss didn’t post it sooner. We waited a couple of days to update people. I reminded her how many people were constantly looking for her updates, so she had a responsibility to tell people quickly. It seems obvious now why she waited. She knew that this would give people hope and that people would think she was back to being healthy, when in just a short time, she’d have to update people with the real news.
Less than two months later, they told us she was in chronic rejection and that she should make the most of her time.
Christmastime, to me, has always started on November 1st and gone until December 31st. School seemed exciting to me during this time, the cold days didn’t bother me, early sunsets were exciting as they gave me a chance to see Christmas decorations going up. I loved this time of year because it meant I’d get to see my extended family for Thanksgiving and Christmas. (For what it’s worth, I love both Thanksgiving and Christmas and have always considered them to be different sides of the same coin; this time of the year is a time to reflect on life and find the things we should be thankful for, while also trying to be the very best people we can be.) As a kid, of course I loved Christmas for the gifts, but when I look back, I don’t so much remember the gifts I received as much as the happy memories I formed during this time of the year.
But as I’ve gotten older, my extended family has spread out and, sadly, thinned out. We’ve lost quite a bit of family lately. Spending Christmas or Thanksgiving at Nanna and Nonno’s was a family tradition, something I looked forward to every year. Now, that’s no longer an option. Now, my family is 25% smaller without Lyss.
This was the time of year that my mom and sister came alive. Together, they were the best gift givers in the world. I’m worried about how this time of year is going to affect my family. It’s going to be hard on us for all different reasons. Grief reflects life, there are always going to be ups and downs. This time of the year will naturally be harder than other times because it’s a reminder of what our life was like for so long, and how it will never be the same. It’s during this time of the year that people rightfully constantly talk about family, loving others, and being grateful. But just seeing how other families are flourishing at this time of year, able to live normally without any fear that it may be their last Christmas as a family, hurts. I don’t think I’m a bitter person, but this feeling is the natural by-product of a tough year.
How to approach the Holiday season is not simple. I’ve talked to my parents; do we start a new tradition with the hope that we’ll create new memories without bringing too much attention that Alyssa was a part of our previous traditions? That doesn’t feel right, it feels like we’re confining her to our past. Do we continue old traditions? This doesn’t feel right because it’ll take years and years of continuing these traditions until we forget what it was like for Alyssa to be a part of them. A mix of both? This is probably the best answer, but at the end of the day, it’s going to be hard no matter what we do.
The Holiday season is when I feel like people are more inclined to try to be good people. It already hurts without Alyssa, but I still love this time of the year. I imagine I always will. As you celebrate the Holidays, I encourage you to take the time to consider how this time of the year is going to be hard on those of us suffering from immense pain. This is the time of year when kind messages or gestures mean more than you could ever know. Please consider reaching out to somebody you know that is struggling and being there for them during this time of year.
I want to conclude with one of my fondest Christmas memories with Lyss. Alyssa was a huge fan of Hanson – you know, the three long-haired boys that sang that infectious ear-worm pop hit “MMMBop” – growing up. Hanson also has a Christmas album titled “Snowed In” and it’s amazing. Me, Lyss, and the cousins loved listening to this every year. Christmas day was my favorite day of the year, and on Christmas morning, Alyssa and I would play this album as my parents cooked breakfast before we opened gifts. I’m sad I’ll never be able to have a Christmas day like this ever again.