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What Helped Change My Perspective With Cystic Fibrosis

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A year ago, my life changed forever.

The question of identity has always fascinated me. As I strive to redefine myself and challenge the notions I have always took as fact, I am turning into a whole new person.

I guess I should start at the beginning. I was born with cystic fibrosis (CF), a genetic disease that affects multiple organs. Growing up, I was lucky to be in relatively good health, but I was already playing in a different field than most. When I was born, the average life expectancy of someone born with CF was 27 years of age, many still die much younger.

What would you do with that information? Would you live your life any different than if you were born a healthy person? To be honest, when I was a kid growing up, it really wasn’t up to me. That burden was felt by my family. I really wonder how a parent can even handle such a diagnosis: Death looming around every corner, every health hiccup, every medical test. But as a kid, you just do your thing, and that is the beautiful part of being so innocent; the gravity of the situation is not yet comprehensible.

But, we all grow up sometime. I buried it deep, and never really engaged with it. Now that I look at it, the dark passenger was present all along, informing every little decision I ever made. I don’t think it was a defeatist position either, I am a very optimistic person. With the ceiling already much lower than most, and the walls caving in slowly, I’ve always felt like I’m slowly drowning, and I do not mean physically this time. I told myself I was growing up living in the moment, “carpe diem.”

And that was the beautiful lie I’d tell myself in my teenage years. In reality, I was eager to betray my body faster than it could betray me. It started with self-injury and evolved to alcohol and drug use. I am responsible for my actions, and perhaps that was the ceiling I had created for myself.

And this is where that question of identity comes into play. We write these stories for ourselves, us as the protagonist. But as we grow, we find it difficult to allow our stories to evolve with us. We find it hard to leave some behind because we are unable to divorce ourselves from these truths that at one point, we felt in our core.

Am I a CF patient? Am I more than that? In what confines am I playing in right now? Are there limits?

I grew up in a time where the future was not pretty for people living with CF. I would utter words of hope and project a positive façade, when deep inside, I was being consumed in darkness. With no ambition or care for any long-term goal, life became a blur. I felt like a tourist in every endeavor I’d engage in, whether it be educational, professional and even recreational. I’d set a low bar and take the month off once I got there. None of this was going to last. It didn’t matter how much I wanted it. I didn’t even allow myself to want anything, and this was perhaps the key to enjoying whatever it is I was. Often, whenever I lingered for too long, reality would set in and gave me a wake-up call.

As a matter, of course, I avoided coming face-to-face with my dark passenger. Compliance with treatments struggles as a direct result, and going for regular clinic visits turns into that moment where you are staring it in the eyes, and you’re not sure whether it’s going to bite your arm off, or give you a pass, just this one time. But it doesn’t go anywhere. It stays right there with you, whispering nonsense in your ear in case you had forgotten.

My journey has taken me to really dark places, instances that never in a million years I thought I’d be a part of. Even today, I do not really know how it is I began seeing the light. I am sure it happened before the advent of Trikafta, a gene-modulator that can treat up to 90% of the CF population by correcting the genetic defect. I can say with confidence the first step was being able to communicate all I’ve described above: First to myself, and then to my close circle of friends. I am not sure why I didn’t, to be honest. Being honest with myself and others didn’t come easy, but as I became more comfortable with it, light started coming in.

We cannot do this by ourselves. And those around us can’t really help if they don’t know what we are dealing with, how we are feeling. I invite you to tell someone you love something you feel is true, but have held deep inside for too long. I guarantee you will feel better, and so will they, because they’ll at least have a chance at being able to help you with it. At the very least, you are allowing them the chance to understand you better.

By opening up, I found myself, and others. Friends came to the surface, and people who had known me all my life faded to the background. Some connections are like stories. There are some people in my life who I have shared so much time with, but have not ever known me under the surface. And that is mostly on me, to be honest. They only saw what I showed them. But as I’ve stopped telling myself some stories, friendships have gone with them as well. And that is OK.

I want to continue writing new stories. I want to challenge myself to actively rewrite the ones I am living. And most importantly, I must allow the story to continue — with no bookend in sight, regardless of what my dark passenger tells me.

A year ago, my life changed forever.

I met a guardian angel by chance. Nothing happens by chance. I met a guardian angel. He selflessly gave me a gift so precious, I can only equate it with the gift of life itself.

What proceeded was a metamorphosis so profound, it has radically changed my life. Every day I wake up, I am amazed at the gift I have received, and have vowed to not take it for granted. I have the responsibility to face this challenge with the same importance as the gift itself.

I have been inspired to rewrite my story. I am still trying to redefine my relationship with my dark passenger, and it will be an arduous process. But, for the first time in my life, I am excited for what the future has in store for me, I am excited for what I can bring to my life and others. Gone are the days where I am no longer in control of my own life.

I am filled with so much hope others around me will feel the same transformation I have felt. If you are struggling right now, with whatever it is, know you are not alone. You can overcome this. You will overcome this.

Tell your story, and question every bit of it. What parts are true, which ones are not. And let this be the last time you repeat those parts you wish not to bring forward with you.

Change begins with you alone, but it does not happen in a vacuum. Allow others to see inside, you might surprise yourself at what happens next, and you might just be opening the door for someone to give you the gift you need.

Unsplash image by Tim Marshall

Originally published: April 25, 2021
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