The most beautiful and best of days are never the easiest ones, nor are they usually what we would have envisioned them to be. These beautiful days are often born out of continuous change, uncontrollable conditions, and unplanned circumstances. Yet, these memorable and meaningful days give the deepest and most life-giving joy one could ever know and have the potential to be our best of days.
To say the last month has not laid itself out as I had envisioned would be an understatement. But, to be honest, much of my life has not been what I had envisioned, nor has it followed any sort of predictable path. One of the hardest things I’ve had to learn and embrace in this life is its instability and how different my mind and my body want to live. No matter how sensitive and mindful I am to the unexpected and ever-changing dynamics of cystic fibrosis, to not only physically survive this disease, but most of all mentally, I’ve had to learn to live a life of compromise - pressing on as I know the world does not stop, while at the same time always knowing there will be those days in which CF unforgivingly will call the shots. I press on knowing that deep down, these are the best of my days. That very deep embodied understanding translates into a constant internal restlessness. A restlessness in which I am seeking to soothe each day with every ounce of passion, strength, and gratitude that swell within the tides of my being. Because what if these are, easy or not, the best of days and I did not live them? What if I merely waited for tomorrow, trusting they should be there? 
Inescapable Instability
For the last several months, my heart, my mind, and my lungs have been looking forward to the opportunity to escape winter’s harsh and never-ending bitterness in South Dakota and be transported into the radiant warmth and salty air of coastal Florida. It was to be a time where I could merely just breathe. A time for me to step away from life’s chaos and wholly reflect on myself, this life I get to live, and merely exist in quieted gratitude - reawakening my heart and mind to the endless beauty I breathe in every day. To some, escaping to Florida may have sounded ridiculous, frivolous, or even selfish. And, in all honesty, it was. Especially, as I think about the medical bills piling onto my kitchen table at home - each eagerly awaiting my return to remind me of CF’s inescapable and costly presence in my life. There is, indeed, a pang of guilt anchored at the bottom of every salty breath I inhale, only pacified by exhaling tearful gratitude back into this beautiful life I feel so privileged to live and the irreplaceable people who fill my life.
For the last several months, my heart, my mind, and my lungs have been looking forward to the opportunity to escape winter’s harsh and never-ending bitterness in South Dakota and be transported into the radiant warmth and salty air of coastal Florida. It was to be a time where I could merely just breathe. A time for me to step away from life’s chaos and wholly reflect on myself, this life I get to live, and merely exist in quieted gratitude - reawakening my heart and mind to the endless beauty I breathe in every day. To some, escaping to Florida may have sounded ridiculous, frivolous, or even selfish. And, in all honesty, it was. Especially, as I think about the medical bills piling onto my kitchen table at home - each eagerly awaiting my return to remind me of CF’s inescapable and costly presence in my life. There is, indeed, a pang of guilt anchored at the bottom of every salty breath I inhale, only pacified by exhaling tearful gratitude back into this beautiful life I feel so privileged to live and the irreplaceable people who fill my life.
Escaping Reality
As I let the ocean’s breeze wash over my skin and feel the warmth of the sun radiate to the center of my soul, I know that with all that I am I needed this time away. I needed this time to step away from the beautiful chaos that encapsulates my life at home, and for a brief moment, feel as if I had escaped CF. Most of all, I needed to immerse myself in the resounding waves of truth that swell within me that these are the best of days, and all I can do is merely live them. Most of all, I needed to just breathe in the beauty that is my honest life.
But, I have not escaped CF, nor will I ever. How foolish of me to think I possibly could. Instead, a few weeks before I was set to leave on this renewing adventure, I found myself with Influenza A, a short hospital visit, and a generous course of cocktails surging through my veins. As always, CF reminds me of its uncontrollable, unpredictable presence in the most inopportune of times. Amidst those times I silently plead for CF just to let me live the life I’ve envisioned in my heart and in turn, push harder through life - hoping to outrun it. We (I say “we” because this beautiful life we get to live whether it involves CF or not, is always a group effort) had hoped my CF lungs had weathered the tumultuous and unforgiving storm of Influenza A. In my mind I kept mapping out what the days leading up to my departure would look like. It was just going to be a quick “bump” in the road. Meaning, CF would flex its angry muscles a bit and there might be a bit more chaos to the usual day, but nothing I couldn’t handle or couldn’t outwill. In my mind, it would all be over before I boarded the plane to go south. Truthfully, I think we all had envisioned these days playing out differently. Instead of pulling Penny just in time to escape to the sandy shores of Florida, I blew the lowest numbers I had in years, a 39% FEV1. While still not my lowest ever, my emotions churned in an uncontrollable fury of desperation, betrayal, and disappointment - the same feelings I felt so many years ago when CF unapologetically confronted me with my own life’s uncontrollable realities. Realities that sent me into a spiral in which I didn’t think I could survive mentally, emotionally, or physically.
The “We” of Life
Most people would have told me to cancel the trip if they had known the extent of what my body was enduring. That traveling, and for an extended period of time, was not probably in my best interest. That being 1,700 miles away from my Care Team at such a time would come with great risk, and in fact, could have irreversible consequences. But, before I even had a chance to think about my options or let my emotions overwhelm me, my Care Team had already set a plan in motion for me to go to Florida. No matter the miles they were right there with me, ready to manage the complexities of my unpredictable and stubborn body. I think they knew I needed this time away just as much as I believed it. Even writing this my eyes fill with tears and I feel the heaviness of emotion on every breath I take for all they are in my life - for merely caring about my life and all that means. But I know they, too, see these are the best of days, and that a life with CF means living in its unpredictable uncertainties and learning to balance atop whatever waves may crash ashore.
Most people would have told me to cancel the trip if they had known the extent of what my body was enduring. That traveling, and for an extended period of time, was not probably in my best interest. That being 1,700 miles away from my Care Team at such a time would come with great risk, and in fact, could have irreversible consequences. But, before I even had a chance to think about my options or let my emotions overwhelm me, my Care Team had already set a plan in motion for me to go to Florida. No matter the miles they were right there with me, ready to manage the complexities of my unpredictable and stubborn body. I think they knew I needed this time away just as much as I believed it. Even writing this my eyes fill with tears and I feel the heaviness of emotion on every breath I take for all they are in my life - for merely caring about my life and all that means. But I know they, too, see these are the best of days, and that a life with CF means living in its unpredictable uncertainties and learning to balance atop whatever waves may crash ashore.
Have the last two weeks been what I had envisioned them to be? Oh, my goodness, no. These two weeks have been far richer, more meaningful, and have been more life-giving than I could ever possibly say. Have they been easy or simple? No. But, they have been some of the best and most beautiful of days I’ve ever lived. In truth, this life I get to live is nothing like I had ever envisioned. It is more meaningful and beautiful than I could ever have believed possible. And it is because of life’s continuous thirst for change and its uncontrollable circumstances there will be days that are not easy, but they, too, will have the makings to be the best and most beautiful of days. Without them would we know the weight and worth of such a beautiful life? I don’t believe so.
The Best of DaysSo, lovingly embrace your life as if these are your best of days. Take the trip. Go for the run. Read a book. Push yourself to do that in which seems impossible. Do what your heart needs you to do, whatever that may be. And lastly, take a breath and breathe in the beauty of this very moment wherever life may find you. It is in these beautiful moments life seems to stand completely still - allowing us to completely exhale for a moment and see today for all it is. It is in that stillness, if even just for a brief second, our hearts and minds are silenced to our own weighted expectations of what we’ve envisioned our lives to look like and our mind’s deafening plight. It’s in those beautiful moments we are able to not only see our journey for what it all is, but are enlightened with the humbled realization that the most challenging of days are what help make the best and most beautiful of days. Love to you all.
the sunset behind looks really beautiful
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