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

The Past Meets Progress

I dare to say the entirety of our lives boils down to a motivation to find the answer to one simple question: what are we seeking? Each season, each step, each decision is composed within the air of a question and motivated by an unspeakable yearning to find a balance, a harmony. A place in which the person in who we are is embraced by a silent steadied faith in who we are becoming and that in which progress has left a memory imprinted within our cells. 

How do we find such a place? Will we know when we have found it or is it merely a state of mind? One in which harmony is found only within the act of seeking in and of itself? 

Every which way my feet take me on Yale's campus this mere idea of what we seek to find lies within life's balance bounces back at me from the over 200+ year old stone buildings set amongst a rhythm rooted in progress. I find myself feeling strangely at home as I walk the stone paths set between spires - a strength not only holding up a history but laying a foundation and stability for the restless to safely seek. One in which allows the past to be married with progress, allowing a peace to inspire a clarity which holds the living hope of the present.

On Monday, September 13 I was cleared to begin the CYstic Fibrosis BacterioPHage Study at Yale [CYPHY]. I began talks with the clinical study team at Yale back in May in regards to this possible opportunity and eligibility. I have now been in New Haven a full week and will be here in total for 30 days. I am grateful beyond words for this life changing opportunity, whatever may come of it.

What is Bacteriophage? Bacteriophage is the utilization of viruses to combat bacteria. So, in this specific study a specific Bacteriophage is matched to a specific pseudomonas aeruginosa strain in hopes to combat the colonization, sputum load, and virulance of the bacteria. For individuals like myself who have come up against the issues of antibiotic resistance alongside a host of risky side effects, this possible avenue for treatment is rooted in a hope for tomorrow. For more time. To not only find the harmony but sustain it for a time. The team at Yale is astounding and most remarkable. But, most of all, they are passionate and genuine about their commitment not only to the progress of combating CF, but their investment into the person behind the pathology. For more information about the study and phage visit: CYPHY and About Phage - CFF. The amazing thing about Phage therapy is that these advancements won't only benefit individuals within the CF community but every person combating surmounting antibiotic resistance and so much more.

The CYPHY study is a double blind study which means I could be given a placebo or the phage therapy. We do not know which I am given. The treatment comes in the form of nebulization once a day - something that is already a staple in my life several times a day. This addition takes place for seven days straight. The clinic monitors any changes alongside PFTs, labs, and symptom reports. Following those seven days I will be seen weekly. After a couple of months, the study will be unblinded and we will know whether I received the phage or placebo. Again, whatever the days ahead bring I am rooted in a gratitude that is immeasurable. 

What does this experience represent to me? As I sit here next to one of the oldest buildings on Yale's campus, writing about a therapy that is older than the use of antibiotics (over 100 years old) l am met with an unusual contentment woven within a progressive hope. I can't help but feel a harmony set within every breath as the past meets progress giving me the gift of the present. As I complete my third official day taking part in the study I can't help but want to hold onto this feeling of peace, progress, and renewed hope. This present will become my past at some point and it will forever have impacted me for the better - whatever that may look like. For a moment at least the restless chaos within me that is ever seeking an assurance of tomorrow is at peace. It's still seeking but it's also embraced by a steadfast history that surrounds me. If those buildings can tower above the earth so mightily with immoveable strength, so can I. The balance between is what allows me to stand tall. To stand for and with my friends and community living with CF. May the progress that is yet to come be one that leaves my dear community enlivened with hope by the mere journey of seeking. And it's in the seeking we are given hope.

Great love to you all. 

Please feel free to reach out to me if you are interested in more information about the study or my experience. Or, for more information please contact Claire, the research coordinator for Yale, at claire.cochrane@yale.edu 

Also, please join us on Tuesday, September 21st for "Sing it for CF : A Marathon of Song" - twelve hours of giving voice to CF. Tune into the  Breathe Bravely Facebook page to hear the amazing voices of singers from the sINgSPIRE program and other amazing artists in our CF community. It's going to me an amazing day.

Hope in New Haven

A few years ago on an unsuspecting late summer evening at the farm with Mark, I walked along the side of the grove as I often would do while he was busy working - walking beside a living history that had seen and withstood more seasons than I could merely ever dream to know. One foot set in front of the other, I followed an unsuspecting path left by the tires of a tractor. A path pressed into the earth and laid before me - leading me in a direction in which would uncover one of the most meaningful and beautiful experiences in my life. It continues to serve as a reminder that the most simple of moments, those moments of mere chance, can hold the greatest unsuspecting lessons and be the most priceless of gifts. 

As I walked through the grove that evening hundreds of Monarch butterflies flew around me, beside me, and amongst the branches. The Monarchs were migrating south for the winter - a sight I had only heard about but had never experienced. Growing up, seeing a single Monarch was always something so incredibly special. It always felt like a gift to see one. There seemed to be some sort of magic in each sighting - even if just for a fleeting moment. Their wings drenched in such unmistakable and unsuspecting beauty in which is silent and never seen unless your attention is held within that single moment - pulled from the alluring chaos of a blurred and busied life. 

I felt breathless as the world seemed to stop for a brief moment as my eyes met the beauty of hundreds of Monarchs that day. I felt embraced by their weightlessness and my soul lifted with each powerful movement of their wings. It was one of the most magical moments. One in which I think of often. 

This past weekend I was walking along that same storied row of trees and brush and happened upon the same phenomenon. I had missed the mass migration by a few days but there were still a dozen or more that stayed behind. Monarchs danced amidst a vibrant blue sky, not fighting against the prairie wind but instead allowing it to carry them higher. Their beautiful wings trusted to the air in which they couldn't see but could only merely feel. I still trust there's a bit of magic within those moments. That each Monarch must simply outstretch their wings and believe in the unseen. And that trust? It makes them soar. When they'd land I was taken aback by the way in which their wings would outstretch as if almost to an unheard rhythm. Lifting their wings to the heavens - their brilliance composing a chorus of hope that cannot be heard but only seen.

In a quick unfolding of events, on Wednesday morning I boarded a plane to New Haven, Connecticut. A few months ago in a spur of a moment decision I took a chance and sent an email inquiring about a study opportunity at Yale New Haven Health. I'm not sure what made me write that first email. No, wait. I do know. Hope, and a deep trust in which I cannot see but can feel within every breath. There are many unknowns to unfold in the following days, and ones in which I will share more about after next week. For now, I have gratefully spread my wings and am trusting that this opportunity will continue to unfold - rooted in a beauty that will forever leave me changed for the better - no matter where the path leads. 

More to come, dear friends. Great love to you all.