For half of my life, I’ve been aware of the life expectancy for people with CF. It’s a weird phenomenon to be acutely aware of how and a general idea of when you may perish, which probably explains why I was so prepared for Alyssa’s death. When I was born, the life expectancy for me was in the early 30s, whereas for a baby born with CF today, their expectancy is in the mid-40s. While life expectancy is a sort of weird measurement, the reality is that it’s more likely than not I won’t live a very long life, one where I can retire, one where I’ll be able to watch my children grow up (if I ever have them), or do whatever else comes with old age. 

But death isn’t what scares me. The way I view death is that it’s an endpoint, and the post-death existence goes one of two ways: either there is an afterlife, in which I expect it to more closely resemble heaven (I don’t really believe there is a hell but this is a different conversation); or it doesn’t resemble anything – in fact, it’s sheer nothingness or non-existence, which is in a way a form of paradise, where our spirits are eternally free from the stressors that come with existence. 

There are things that scare me much more than death. What scares me is a life half-lived, not in time but in fulfillment. I fear when I near my end days, I’ll spend some of my final moments wondering if I could have lived a fuller life. I fear the suffering and pain that come with dying of CF or lung-transplant rejection, a fate that my sister was basically victim to three times. I fear a timeline where my parents and family have to grieve me dying at a young age, just as they dealt with this year with Alyssa. It’s in this timeline where my friends are telling stories of the days we’re currently living over a couple of beers, reminiscing on what very well may have been the golden days (and I hope they’re giving me just as much shit as they do now). It’s these petrifying visions that push me to be adherent and continuously get better to ensure my health stays stable for as long as possible. These visions helped resurrect me from the depths of my depression. 

I often wonder if contemplating my existence encourages me to live life better. After all, thinking about my inevitable death – no matter how long my life is or how I eventually die – won’t prolong my life or change my fate. But maybe, my mind rationalizes, if I do ponder my existence, I can live a fuller life, mitigating the chances of my final days being spent in regret or disappointment. I can’t reduce the grief that will come for my loved ones, but leaving a mark on the world, whether that’s through my writings or their memories, will hopefully be there for them during tough times, just like my sister’s social media footprint has been there for me. 

I fear that my obsession with death and talking about it causes me to worry others. Most people definitely don’t like talking about death. Even worse, people usually don’t like to contemplate how they may die, how they will have left their mark on the world, or how they will process the death of people they love. It doesn’t help that I have written about my struggles with depression and suicidal ideation, possibly lending credence to the idea that I’m nearer to that place than I let on. I tiptoe around death like it’s not the object that unites all sentient creatures, all of us lurching towards a place where we all reside together eventually. Death is that, however, and American culture declines to treat death appropriately. We consider it to be too heavy, and we allow ourselves to push it out of our collective conscious, as if ignoring death will stymie it, when we all know that’s not true.

I tiptoe around this reality for other reasons as well. I know my parents are going to read this piece. I know people that love me and care deeply will read this. I also know there are some people that don’t know me well but have read my words and have become a friend to me who will read this. I’m careful talking about this because I don’t want people to worry, feel pity, or think about what might be ahead in our shared future. One of my goals with writing, though, is to be authentic and progress discourse. It’d be unauthentic of me to not ever acknowledge my thoughts on this. It hurts me to realize that others will be hurt to know that the thought of death injects itself into my life every day. 

I don’t fear death; I fear never feeling the cold breeze on the nape of my neck as I walk outside during winter days while listening to my favorite music ever again. I fear never tasting coffee again, or smelling the air after a springtime rain. I fear never being able to call my parents with exciting news again, or for that matter, having my dad get on me about being lazy while moving, or my mom nag me about telling her what I want for Christmas, just as they did earlier today. I fear the days of their lives where I remain only a memory to them, like Lyss is to us now. I fear the world where Duncan’s excited tail-wag after I was in the shower for only five minutes doesn’t lighten my mood immediately, where it shows me that I’m okay in this moment right here. 

I’d by lying if I said there weren’t days I didn’t feel intensely fucking bitter. Right now, as I type this piece in my dark “office” illuminated by a blue rope light on my desk and while listening to a Chill Vibes playlist on Spotify with a La Croix by my side, I realize that I am feeling simultaneously bitter and content in this moment. I feel content because I’m writing words that will live long after me, but bitter because I know there will be a time where I’m a transient memory passing through somebody’s mind while my spirit is resting, where I can no longer experience this strange moment of my existence. Bitter because I know this is something most 24-year-olds never have to think about, but content in knowing my preoccupation has hopefully made me better because of it.

I can reluctantly acknowledge that my mind’s intimacy with the concept of death has influenced my life already; in the ways above, but also in some positive ways. Writing is my way of lengthening my life. I’ve heard a quote, it’s one of those Pinterest quotes that you never really know who actually said it, but it’s something along the lines of We all die two deaths. The second of which is when we are forgotten forever. (Side note: I just watched Coco a couple of weeks ago and the movie is basically about this idea.) This quote is one of my reasons for becoming a writer. Writing allows me to permanently put my thoughts onto paper and out of my mind, thus releasing them. I hope my words and thoughts live on long after me, somebody stumbling upon them in the future, getting to know me just as I’ve gotten to know so many writers before me. 

My obsession with death has given me an innate sense of impermanence and how quick our existence is. My experiences with CF, grief, and the fears as a young kid of the specter of death have reinforced messages of compassion and empathy that my parents instilled in me at a young age. I try to be a reflective, considerate, and compassionate person because of my preoccupation with what it means to live a good existence. 

When Alyssa was a teenager, she was struggling with adherence. She had to switch physicians because our previous one had recently left. At one of her first visits, the doctor, in what was probably a good-faith but poorly-executed effort to improve adherence, asked Alyssa if she wanted to die young. This was the conversation Alyssa and I tabled indefinitely. I think we both knew there was no benefit to us discussing our thoughts on an early death, though she did leave us with some of her thoughts on it all at the end. I’ve thought a lot about death, but it has only been recently that I’ve so casually written about it. The reasoning for this was because Alyssa and I hadn’t discussed it much and, for whatever reason, I felt that it wasn’t fair to her for me to talk about death much. 

These types of experiences – learning at twelve years old you aren’t expected to live very long and then wondering if your parents treat you differently because of it (they didn’t), seeing your sister struggle so much and then ultimately take her final breaths, or even starting a career and debating if it’s worth starting a retirement fund because you’ll probably never reach that age – have a way of affecting how a person views the world. This remains nobody’s burden but my own, but for my writing to be the most genuine writing, it’s important I write about my thoughts and feelings.

Life will end for all of us. I’ve just never had the luxury of putting death on the back-burner and the possibility of an early death has both caused me enormous sorrow and also the ability to appreciate the minor, glorious moments of life. 

I don’t fear death. I fear no longer living.

tl