Realizing Hope : The Heartache of Hoping (Day 3)

Every beautiful and difficult moment of our lives is rooted in a seed of hope. Each hope born out of circumstance or experience, sought after or merely unexpectedly given. Hope is always evolving and blooming into life anew, just like the very breath in which we take and give back to the world. Sometimes, hope is a beautiful realization of all our heart could ever possibly dream. It’s breathtakingly beautiful.

But hope also holds the potential to culminate in a way in which shatters our heart. A devastation that grips every breath, forcing us to grow in a way we never thought possible or silence us from ever hoping again. But within even the greatest devastation are embers of hope, waiting to be set ablaze within our souls. It’s what we do in that devastation that makes us truly who we are and allows us to fully live our truth. For that is where the greatest possibility lies. 

CF has broken my heart and my spirit before, and I’ve learned to guard myself against the hope I freely give to it. After all, the higher the hope the greater the risk of losing myself to its heartache. And that hope, or the loss of it, never falls upon just oneself. I hide my tempered hopes beneath an air of bravery and gratitude. It’s to protect not only my own heart, but the hearts of those I love so dearly.

Buried Hope

A few months ago, after the approval of Trikafta which came almost a half a year earlier than expected due to such promising clinical studies, I found myself in the grips of abundant hope after finding out I would, in fact, be eligible for this drug based upon the FDA’s wording and the luck of my genetics. My mind began racing with possibilities and hopes that I had thought been buried long ago. Suddenly, the “what ifs” of life I had mourned and silenced found a voice again. My mind racing and my heart bursting. That night, after sharing the news with close friends, I crawled into bed hours after Mark had been fast asleep, just as I’ve done for years. This time, however, tears drenched my pillow as I stared at the love of my life, hoping beyond all hope that we might grow old together. I laid there with my mind running wild and my heart remembering what it was like to dream - thinking about the other loves of my life: my dear friends, singing, our goddaughters, traveling, and so much more. It’s a hard thing when you’ve spent your entire life preparing yourself to no longer be a part of the people you love’s narrative to suddenly be engulfed in a flame of unbridled hope. Living simply in the beauty of every present breath is a beautiful thing, but it also has been a way to protect my heart when it comes to living with something so unrelenting and merciless as CF. Living within present hope and a humbled gratitude have been my solace and my means of survival. 

Guaranteed to bloom

The truth is, these lungs are damaged, this body is worn, and it’s riddled with over three decades of the effects of cystic fibrosis. These lungs have only known recurring infection, are adorned with bacterias resistant to antibiotics, have weathered countless adverse effects, and years of progressive scarring. There’s much about my life with CF that will forever be unchangeable, even with a drug like Trikafta. But regardless of what comes from knowing such possibility, I take the deepest breath I am gifted at this very moment and guard my hope and my heart with all the gratitude I have. For I don’t know if I can mourn the same hopes again. But, I can and will find the beauty in whatever this journey brings and the new hope it inspires.

There are never any guarantees in this life and that is merely why we must hope. It gives us life, regardless of how it is ever realized. Out of devastating hope something more beautiful than we could have ever imagined flourishes into existence - blooming into something greater beyond our dreams. As I begin this third day of Trikafta I’m filled with hope. A hope that this life will bring me to where I am meant to be and that it will be realized in my living truth - bringing beauty to the world through whatever voice is needed.  Love to you all.

Feeling its Effects 

- Day 2 - 

Each morning as I pop the first two Trikafta pills out of the blister pack for the day, I hold them tightly in the palm of my hand, take a thoughtful breath, and gratefully hold the memory of those with CF who have come before me and all those currently waiting to know such a possibility in the form of three small pills. I whisper beneath my breath, “Come on, little body. We can do this”. 

When I woke up the on morning of day 2, the first thing I noticed was that I was breathing differently through my nose. I can’t explain it exactly. I could feel air passing differently through my nasopharynx. The air felt somehow unrestricted. Don’t get me wrong, there’s still a lot of pressure in there, but it's the first time in a long time I didn’t feel as if I had to pull air into my body through my nose. Day 2 also brought me a new sense of smell I never knew I was missing. It may sound bizarre, but I buried my face into Kal’s fur (he is so fluffy right now!) and noticed he smelled differently. Not bad, just different. Like, I could smell the oil from his skin. When I hummed a song today, I also felt the vibration differently in my face. Or, I should say I actually felt it which hasn’t been the case in a long time.

My lungs also felt incredibly sore and my usual dry cough had some rattle to it. Most of all, I could feel things in my chest moving around. I imagine my lungs are like an expert level pinball machine with so much scarring and bronchiectasis making it difficult for any mucus finally moving around to find its way out. I’m also trying to be cautious as to not break any ribs or exacerbate the last ribs I broke a month ago. We knew going in to be cautiously optimistic with how these lungs might be affected. I have to remember that positive change doesn't always come in the form of a bigger number, but can come in so many other different ways. For now, I am patient with these lungs and giving them much grace and gratitude.

As for side effects, by the end of day 2 the horrid stomach pain I've been hearing about settled in. I had a similar pain years ago and the only way I can describe it is if you’ve ever had the wind knocked out of you or been punched in the gut in seventh grade by a soccer ball. But, as we know, CF doesn’t just affect the lungs, it affects every organ. Imagine 33 years of buildup in your body’s duct work is finally moving the way it should. “Come on, little body. We can do this”. 

*This is merely a reflection of my personal experience taking Trikafta. Please consult your care team if you have thoughts or questions about Trikafta.