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.