I’m Dying
I received a progressive, terminal diagnosis at age 19. This is why it changed nothing.
I’m dying.
I’m gonna die. And shit’s probably going to get worse before it gets better.
Shit, we’re all going to die — but a lot of us act like we’re immortal. And I get it. I’m not mad. I think that that’s common, to think that there’s no end. In certainly guilty of it. But there is an end and it can come at any time. That is why time is of the essence. You can’t act like tomorrow is guaranteed because it isn’t.
But I’m dying.
After my freshman year of college, I was told that I had something that on average comes with a life expectancy of about 36–38 years depending on where you look. A few years before then, life expectancy was 20-something. And a few years before that it was your teens, and when it first was a thing that was discovered, shit, you got it and good luck to ya. You were going to be dead in three years, four years, right? Parents of a child with Cystic Fibrosis at one point had to reconcile themselves with the fact that they might have their child for only four years. So fast forward to today and things have gotten better in the field of CF, but still. Can you think about getting that type of news and then trying to be a regular person? I was 19. Now I’m 23.
I’m dying.
But you wanna know the crazy thing?
The crazy thing is that all of y’all could die before I do. The crazy thing is that, in a way, my diagnosis changed nothing.
So what are we doing here? What am I doing here? In life? On this space-rock? In the Universe? If you’re not asking yourself that — if you, reader, are not asking yourself that — then you’re lying to yourself about your life. You’re wasting your time. And when your time is up, you’re going to have to look back on it and ask yourself if what you just did was live.
But why wait till your dying day to ask that question? I invite you to ask it now.
Are you living right now? I know that I spent a lot my life not living. And if I’m going to be real, I think a lot of us are doing the same thing. Why are we doing this? Why are you doing this? The answer is hard to pin down.
Even more confounding is that we can go for such a long time in some pseudo way of half-living and not acknowledge that that’s what we’re doing. Or perhaps you’re a step further along and do actually acknowledge the fact that you’re not living…but you continue to do it anyway. What type of self-harm is that?
But I’m dying. I’m dying.
I keep on getting sidetracked from that.
I was told that, you know, for most people who get CF — it’s like 90% of the time they’re going to die from it. It’s a progressive, terminal illness. So, I don’t necessarily know when or how, but I know that more than likely my death is gonna be because of this thing.
I’m 23, and I’ve already been told what is going to be my cause of death, most likely. That’s crazy to me. That’s fucking crazy.
And no. I don’t think that my 40th birthday is going to come and I’m just going to drop and it’s gonna be like, that’s it — no more Nathan. No.
You know, my case isn’t that bad: I could very well live a long life, but there’s something that is profoundly — shaking. Unsettling. About getting some information like that. Death isn’t an idea anymore. There’s a proximity to it. It’s unavoidable. People can lose their lives but no one has ever lost their death. Death is a certainty. It gives you a sense of urgency.
But the point of me writing this isn’t that I’m dying. The point is that the sense of urgency that comes with a significant diagnosis is one that, really, we all should (read: must)have.
Like I said, I have CF. You (most likely) don’t. But you could very well die before me.
Try this out. Think long and hard about the fact that when your life ends is not up to you. It can and does happen at any time. When you do this, and you inevitably realize that “any time” can be as soon as tomorrow, you start to think about what it is you actually have. And then you start to think about what it means to truly have something. Do you have anything? Do you have your home? Your car? Your politics? Your visions for the future? If your physical body, your life, can leave you at anytime, do you even have that?
So what do you have? You have yourself. We have ourselves. And ourselves are different from our lives in that we cannot lose them. I use the word “lose” here in a definite sense. If something is definitely lost it cannot be found again. Even if you’ve ever been convinced that you “lost yourself,” it’s still the self that is experiencing that sense of loss. So we cannot lose ourselves because we are them. The self is what’s inside. Even if we we don’t like what’s inside, it’s not like we can avoid it.
What do you have inside?
I have a lot of love inside of me. I have a lot of pain. I have plenty contradictions. I have a lot of laughter.
I don’t mean be the one to toot his own horn on the internet, but I’d consider myself to be a Fun Person™. I enjoy myself. And I think that in my enjoying myself people can enjoy being around me. I love to share that laughter and that joy and that pain and those contradictions and that love that I have within me with others. And I know that if I want to truly live — not the half-living I mentioned before — I have no choice but to do it. I absolutely have to do it. I have a responsibility to do it. I must because my time is not guaranteed.
But how can I directly love with my time?
How can I take that love from just something between me and those close to me and say, “Hey! This love is between me and the whole world because the whole world is close to me.”
It is a sad thing to live disconnected from the world. And in 2018 disconnectedness is the norm. I wouldn’t say it’s our fault that we’re disconnected; this life, especially now it seems, makes it very hard to stay connected and sane. To an extent, we got ourselves in this mess, but you can’t really blame a baby for falling down when it’s learning to walk. We know this. And this knowledge weighs on us and it hurts us because we try to ignore it. But if we have any interest in living, that decision to ignore cannot continue.
Once you’ve learned something, it is on you to transmit that which you’ve learned. If you’ve found freedom, it’s your responsibility to put your hand out and bring other people along with you to that freedom. Why be selfish with knowledge? This responsibility, when you realize that you and everyone else has it, can seem more like a curse than a blessing.
But honestly, reader, it’s only a curse because it makes it hard for you. It’s only a curse because it asks you to change the way you’ve been living, and if you’ve been half-living for long enough, switching to full-living can be a traumatic experience.
Change can feel like a traumatic experience.
But what worth accomplishing was ever done easily? Shit needs to be hard for it to be worth it. What worth accomplishing was ever done without change? Shit needs to change for it to be worth it. That’s the only way you can grow. What isn’t growing is dead. And the point here is that we’re trying to live.
Deciding to live is the only way we can be better. That’s the only way we can change.
Nowadays, you don’t have to look far to see how many of us are feeling. Our depressions and anxieties are not coincidental. They come from the fact that we’re lying about how we’re living. Ignorance is bliss. Cognitive dissonance is poison.
What we need to do is change. What we need to do is grow. And it’s not going to be easy because we’ve been ignoring this need for so so long.
Sometimes, I concede, it can feel like we’ve lost our humanity.
But I don’t think it’s been lost. I think it’s been misplaced. I think it’s been masked. I think it’s been hidden away and we’ve just got to find it again. And I know it’s there, because the moment I don’t think it’s there is the moment life’s not worth it. It’s not worth continuing. That’s the moment I become a cynic.
If you’ll oblige, I’d briefly like to talk about hurricanes. Trust me, there’s a point to this:
I almost feel bad saying this because like, this is a real thing that truly devastates people, but part of me really likes hurricanes, man. As a concept. Cause they just have a way of stopping everything. They’re this whole event. And no one decides or even knows where it’s gonna go or what it’s gonna do except the hurricane. Hurricane don’t care about your plans for the weekend, how much money you got, where you from, how pretty you are, how nice your car is — If the hurricane feels like it wants to be a category 5, and fuck up the whole east coast and ruin all your shit, it’s gonna do it. Don’t have to answer to nobody. Who do you know that can argue with a hurricane? Hurricanes don’t give a shit about you and that’s a beautiful thing. As special as you wanna feel just cause you think you’re all that, there’s something even more special about being reminded that you really ain’t shit. It’s this type of insignificance that gives you significance. It gives you the moment. The now. It forces you to confront what you truly have. It’s like — you know when there’s torrential downpour but it’s warm enough outside to go out? There’s nothing like that. I remember this one time in particular when I was younger, when it was exactly like that and it wasn’t even a hurricane but it didn’t have to be. And I can’t remember when it was, but it stuck with me, man. Because you go outside — by yourself or with whoever you’re with and there’s just this thing that is so much bigger than you, pouring, giving water. More than you could ever need, but also just the right amount. So much water that it feels like it could never end. And the sound is deafening. And it’s all you can see. It’s so present that you start to feel like there’s actually only the rain and not you. And you’re not wrong. You just get to experience the rain. And like, no matter who you are, or who the person next to you is, or who that dude down the block is — you know that if you’re outside at that exact moment, that you’re all feeling the exact same things. The same cleanse. The same essence. The world decided that you either needed a shower, or a baptism, or just a break, and it came through. For you, for me, for all of us. Like we can choose to feel insignificant in relation to others, cause we do that shit all the time, or just decide that everybody’s insignificant in relation to just this. The music. The rain. Whatever this thing called life is.
See what I’m getting at?
Look, I’m dying.
But so are you.
And time is of the essence.
Even if you don’t directly die because of our negligence in living, your children will, or your grandchildren will, or all of us eventually will.
I’m going to live my life with love, and love sometimes means doing the shit that’s hard. Sometimes it means tough love.
So here’s some tough love, reader: wake up and live already. It shouldn’t (read: doesn’t) take a wild medical diagnosis to decide to wake up. It doesn’t have to take a hurricane either. I’ve seen a glimpse of what life is like when you decide to live it. I now have a responsibility to strive for it. I now have a responsibility to share.
So guys. Come on. Check it out. It’s inside of you. You don’t have to go anywhere to find it.
And if you find it and you really don’t like it, then fine. I can’t make you do anything. I’d only ask you why you didn’t like it. But at least take a look at living. Will you? Don’t knock it till you try it.
I don’t know. That’s how I’m trying to love as the imperfect person I am. That’s how I’m trying to love before I die. On my dying day I don’t want to regret the things I never loved — I don’t want to regret not loving and I don’t want to regret time having been wasted. And you shouldn’t want that either. If you don’t want that, then you’re really going to act differently. It’s really that simple.
And after I’m gone — shit, after you’ve finished reading this piece — it’s gonna be really easy to just go back into the way that things were and just kind of pretend that you never read this. I hope you have no interest in pretending.
So it’s on you, my friend. What are you going to do?
I know what I’m going to do. I know what I’m trying to do. I know what I’ve been trying to do. And I know that I was spending a lot of time ignoring the fact that I had to do it. But that time is no longer. And I would invite you to make that time “no longer” for yourselves as well. I’m saying that because of the love.
I love each and every one of you.
Thank you for reading. I maintain that Cystic Fibrosis didn’t teach me anything. It simply made it impossible to ignore that which I already knew. I was diagnosed in 2014, after my freshman year of college, and 36 days after my younger brother, Caleb, got the same news. The ramifications this had on us and our family and friends cannot be understated. This piece is dedicated to my brother, and then to those friends and family who have supported us as we embark on this journey, and then to you, reader, for taking the time to grapple with these difficult but immeasurably important questions. If this stirred anything within you, and I hope it did, please pass it along.
- Nathan
