A Trial of Change

The greatest tragedy in life is not born from the absence of living but from living a life enslaved to distraction. We exist within a restlessness that endlessly is seeking answers to questions we don't have the words to say. That restlessness slowly numbs the senses and we begin to simply exist while the ache within our soul seemingly grows more and more each day. We feel it, but simply press on chaotically in search of the answers and purpose we seek which in hope may calm our mind, heart, and spirit. That it may expose the belonging we seek within ourselves - a contented vulnerability in which our truth might enliven every sense - making us feel most alive. 

But distraction can so often look like living. Its chaos can consume us and its busyness exhaustingly and falsely invigorating. It becomes something we can quantify, measure, and paint as purpose. 

But in a single moment it all can change. Something finally catches our eye in which makes us look up and suddenly see the world differently. The world seems to stop for a brief moment. For the first time in a long we feel the air drenches our lungs and fills us with life. We simply breathe and at that moment we know that's enough. That we step out of the chaos. We feel an unexplainable change - a peace washing over us and through us. Our senses awaken. A vulnerability exposed. Our truth set within us and before us by the change that surrounds us. 

That change is in the air and literally all around us. No matter where we look signs are silently alive - waiting for us to pay witness and give reproach. It's up to each of us to take the lessons composed in such change and allow ourselves the freedom to be transformed in unexpected ways.

28 days ago I began a journey at Yale New Haven Health cleared to enroll in the Cystic Fibrosis BacterioPhage Study at Yale [CYPHY] Feel free to read my last entry to find out more about the study. I have walked the streets of New Haven more times than I can begin to count, I have strolled the stone walkways of Yale's campus and bathed in the streams of sunlight that warmly pour through the centuries old towers of stone - painting an ever changing masterpiece alongside the breathtaking architecture.  I also had the great gift of seeing parts of Cape Cod with a dear friend as well as Mark making a trip out East and together exploring the Catskills area of New York and making memories with friends in New Jersey. The beauty of such grace and memories is not lost on me.

In the last year and a half I minimally left the safety of our home's walls, seemingly locked away within a privileged tower. Or, as many of you know I have called it my "Polly Pocket" House - everything I could ever need under that little roof. Enough room for me and the dogs, and Mark when he moved back in with us  - deciding together that his endless absence to keep me safe wasn't worth the unknowns of time we seemingly were wasting living apart. So, as I walk these streets multiple times a day I can't help but take in the splendor, freedom, and awe of living outside such towers. And most of all, the gratitude that fills every cell of my being for the opportunity to meet and be around so many wonderful people. 

When I reached out last May to the team at Yale to learn more about the CYPHY Trial and see if there was even a slight possibility that I might qualify, little could I have ever known that the hope I was silently seeking would be given and shown to me in the most unexpected ways and of places. I am going home to South Dakota tomorrow after 28 days here  - changed beyond measure. A change that might be unrecognizable to most but one that lives and breathes within me. Being gifted this opportunity to be a part of this study, to simply be here, has changed me in more ways than I could ever possibly begin to put into words. I'm leaving with a peace I thought wasn't possible, a quiet hope so much greater than imagined, and a gratitude rooted in a belonging that will only ever be found beneath the bluest skies my eyes were freed to see. The world is changing all around me. Over the last four weeks I've watched the leaves turn. As I sit writing this, leaves begin to silently and unassumingly fall from the trees beside me - landing atop my head and atop my keyboard. Students, faculty, and others undoubtedly like myself walk with blind determination - distracted by the stress and self assumed expectations assigned by the world around. 

But, I see them. The people, the leaves, and the color of the sky. I can't tell you how many times I've clutched my chest and held back tears because everything just seemed so beautiful - the silent details of a world I'm grateful to be a part of is simply so remarkable. Within each falling leaf, in every stone beneath my feet, and in the chiseled details of soaring arches I'm reminded that the present is where we see the beauty, it's where we find our truth. It's in the present moment our souls are freed to find change - the change we have been unknowingly seeking. The change we need to truly live. 

For seven days straight I inhaled the study drug/placebo - charting any symptoms I felt or disclose anything that had changed. Following that first seven days I have been having weekly appointments with the research team reviewing any changes, my overall experience, doing PFTs, Lab draws, and giving them some "goods" from my lungs. Over the next five months I will return to Yale for a few quick appointments just to check in. Following that time we will learn which group I was a part of - the placebo or the phage. 

Has this month away being a part of this study been worth it? I don't know how to answer that because how do you quantify something that has been truly priceless? I cannot possibly find the adequate words to convey the depth of my gratitude towards the care team at Yale.  The opportunity to witness their passionate brilliance, be on the receiving end of their genuine and warm care, and be infused with their hope-filled determination will forever leave me changed wherever the days ahead may lead. CF will always be a part of my story. It will always be a part of my past, my future, and most of all, a part of my present. It is not my tragedy. It is my truth. One in which has been a catalyst for finding peace within my present. A truth that will forever allow me to see the peace-filled beauty in every breath - renewed by a gratitude that can only come from grace like that in which I've been shown over this last month and throughout my life. A grace born from trials of change.

For more information about Phage therapy and the CYPHY study I highly recommend this conference session which is led by the lead research scientist (Dr. Chan) and lead research investigator (Dr. Koff) that I have had the privilege to work with over the course of this last month. https://www.youtube.com/watch?v=MNMK_Scl6so...

If you'd like contact information to inquire about participation in the study let me know and I'd be happy to share.

To read the previous blog entries visit www.breathebravely.blogspot.com