Realizing Hope - Certainty in Change (Day 7)

We wake each day seeking certainty and stability. We look towards the east as our eyes search for any glimpse of the rising sun - seeking a silent certainty as we step out into a cacophony of chaos beyond our doorstep. The gentle brightness of the morning light infuses our spirit with an empowering hope that inspires us with a strength for whatever uncertainties may lie beyond that moment that we will be brave enough to face each just as we are. Then, nightfall dares to descend upon the day. The sun breathes its assuring beauty across the sky - kissing our eyes with its certainty of another day’s promise. 

We look to the sky to remind us that some things will never change. But in all actuality we are witnessing just the opposite. For the sun itself does not rise and fall in the same place in the course of a given year, and neither do we. Each day is new. It is brilliant with possibility rooted in a certainty only born through change. 

Change is the only certainty we have in life. It permeates our very being and is the mere definition of living. We fear change because we believe it lacks certainty, but it’s the very basis of any certainty we come to know. So why are we so fearful and paralyzed by the very change we are seeking for the sake of realized certainty? 

Because it’s always filled with so many unknowns in which we cannot control. 

In a life lived with cystic fibrosis, change and certainty have a complicated relationship. Our bodies are vying to destroy us - changing without our permission and we cling to any certainty we possibly can. It’s a brutal balance. One in which we know we can’t live without. Because in every new treatment to save us lies the certainty of change - it just might not be realized in the hope our hearts had set upon it. But there will be change. Sometimes that change comes like the mere rising and setting of the sun, easily seen and understood, becoming an assured certainty to the landscape of our life. Sometimes that change lies within the hidden certainty of mere minutes in the form of growing daylight - embraced by the small quieted certainties of progress. 

But certainty and change are impossible without hope. Every known and unknown certainty in our life is born from an unspoken hope that breathed life into its possibility. A drug like Trikafta will change many people’s lives, including my own. That change will be realized uniquely within every individual who is lucky enough to know such an opportunity. There will be change. That is for certain. The uncertainty lies within how that hope will be realized within each of us. The uncertainty comes from not knowing what kind of change that will exactly be and how it will manifest itself within our lives. But, all we can do to dispel those uncertainties and unknowns is bravely hope. With the break of a new day and the grateful setting of the sun, I will hope. And, in that hope alone comes certainty of change. Love to you all. 

Feeling its Effects

- Day 6 - 

The miracle that is this drug is not lost on me. I know there are changes happening within my body that I cannot even begin to fathom, nor can I readily feel or see. But, nonetheless change is happening - both positive and challenging. 

Yesterday came with continued challenges in the form of joint and body pain. I seemed to be able to stay on top of the worst of it and keep the edge off for most of the day with strategic timing and dosage of nsaids. Pain is something with CF I’ve learned to live with, but this intensity is pretty brutal and exhausting. With the good comes the trying, and I’m hopeful that this is just a phase as my body continues to adjust. 

Tremors and neuropathy are a frustrating combo. They’re something I’ve struggled with over the course of my years and progressive usage of antibiotics. I woke up yesterday morning with my hands tremoring and neuropathy in my left arm. I know with my own journey with tremors and neuropathy there are tougher days when they appear and other days when they seemingly non existent. I rise just ready to take on the day with whatever this body and life has given me.

There are still so many incredible things that my body is rediscovering. I’m in awe of the little things that have surrounded me that I haven’t been able to know. You know when you open a carbonated drink and take the first sip and it bubbles up into your nose? It hurts, right? I felt that for the first time in years yesterday. I forgot that even existed. I can’t help but smile. 

I asked Mark last night if my hands and fingers looked different to him at all. He said, “yes, they don’t look blue”. I was shocked. Maybe because I live looking at my hands all day that I have never thought them to be discolored or blue. Clearly that is not the case.