We never belong just to ourselves. Each of us is wrapped within the hearts and lives of others just as the stars are wrapped within the night sky. The darker the sky the brighter the glow from each illuminated and suspended diamond. Each one individually beautiful and bright. Yet, it’s when they all shine together across the expansive canopy of the heavens that they make the night sky truly come alive. Their gentle, yet powerful glow enveloping each of us just the same - silently reminding us that we are all connected to one another, and most of all, that we are not alone.
We are those stars. Illuminated by a hope that burns within each of us - silently radiating upon the lives of those we love. That hope is what connects us to each other. Your hope becomes my hope, and the light of my own hope silently finds a unique place within your own life. Hope is born of the most raw and deep emotion. A life with cystic fibrosis is survived only in hope, yet lived and fought in grounded reality - one that can be born of immense heartache, disappointment, and loss. There are a lot of diverse emotions that come along with living a life with CF, and those of us living with the disease watch our friends and family endlessly hope along with us. My hope doesn’t belong to me alone, it finds an echo within the wishful hearts of those whose love illuminates my life. For me, the most difficult part of living with this disease is not enduring its unrelenting and unfair wrath, but it is not being able to live in the realized hope of those who surround me.
A drug like Trikafta ignites so much possibility for hope to be realized. A drug like this carries so much weight within not only my life, but the lives of those that love each one of us affected by CF. Because what if that hope is not realized? Not only will it leave our own hope silently shattered, but even worse, we will watch the hope of those our hearts belong to lose their life-giving glow - extinguished by a suffocating disappointment. Regardless of how Trikafta unfolds in my life, I will be able to resiliently endure and find the beauty in every breath. But, what I am not strong enough to handle is how such unrealized hope is reflected in the eyes of those I love. Just as my hope is their hope, their pain is my pain.
No matter the moment or where exactly this Trikafta journey is meant to take me, it’s moments like this I must remember to simply look up. No matter if I can see them or not, the night sky is always filled with stars - reminding me that I belong to something so much greater than simply CF. That I am embraced just as I am, however I am, and that most of all, I am not alone in this journey no matter the hope we share. We shine brightest when each of our hopes is reflected in each other, no matter how they are realized. The only thing that matters is that hope is alive within each of us. Love to you all.
Feeling its Effects
- Day 5 -
I’m grateful for the opportunity to feel all the sides and impact of this tiny powerful drug. CF manifests itself so differently within every individual, and a drug like Trikafta therefore will impact us each in its own unique way, and on its own timeline. There will be days that Trikafta will give me its best, and there will be days in which I am reminded that this body still and always will have CF. All days, however, will hold their own unique beauty.
I can’t even begin to tell you how great it is to not pull my contacts off my eyes every single night, but instead they easily just pop out. Or, to have my pockets stashed with eyes drops to make it through the day. No longer does it feel as if my eyelids are passing over sandpaper when I blink. It’s pretty wonderful.
Because Trikafta is aiming to restore a faulty CFTR protein and the way it expresses itself, the chloride level in my body is altered. This affects EVERYTHING. Even the oil glands in my skin. My usually dry hair and scalp that can go at least 5 days without being washed suddenly is filled with oils that I am not used to. Mark said to me just the other day, “I don’t think you’ll be able to go 5 days anymore without washing your hair. Your hair looks oily”. That’s love. That was on day 3 hair. It may seem like nothing, but it’s everything.
Day 5 was hard, I’m not going to lie. My body hurt. Every joint in my body on fire and no amount of ibuprofen would touch it. Even putting on my Monarch last night seemed suddenly crushing to my frame. Joint and body pain is not something new to my life, but such intensity and the inability to subdue in any way is. Usually, when I would wake up knowing my body was going to work against me for the day, I’d simply push through and busy my mind to overcome it. But yesterday, no matter how hard I pushed, my body pushed back. Today is a new day, and all we can do is take the best from it and be hopeful in tomorrow.
I know so many would do anything to endure the best and the worst of Trikafta. I know this opportunity, while knowingly will have its ups and downs, is an incredible and priceless gift that I do not take for granted.
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