Conversation and a burger just off of I-85

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Rod Spadinger

As defined by Marriam-Webster, conversation is an oral exchange of sentiments, observations, opinions, or ideas. When two people with Cystic Fibrosis get together over lunch, formal definitions are unnecessary.

Just off of I-85, I turned into the designated place in Valley, Alabama, a spot known for its golden crispy fries and all-day breakfast. But that afternoon, it was the place where two CFers who have been through a lot, were set to share their stories of battles with this chronic, lifelong ailment, that few truly understand.

It was at the far end of the eatery, on a summer afternoon, near the window fronting the parking lot, where our nearly three-and-a-half-hour conversation took place. While the sustainable paper cup resting at my hands was brimming with coffee, my discussion with Joshua Akins was saturated with dialogue, including frequent hospital stays, bloody coughing fits, sure to impress only the most senior nursing staff on the floor, and in fact, conjuring the most unintended Halloween re-enactment.

The conversation seemed to be non-stop, jumping from topic to topic. Mostly aimless and indiscriminate, while sometimes targeted and specific. About the ailments that affect us both, and about both his life journey and mine.

Thanks to the miracle drug Symdeko, Joshua embodies the new trend of stability in CF health. As a result of the next generation of CF medication, and Joshua’s spirit and will power, his lung function has improved to 60%, which has allowed him to avoid hospitalizations for the past two years. 

Two years without needing to be hospitalized to the typical person who's over two decades old, a person without a debilitating disease such as Cystic Fibrosis, is similar to a flash in the pan. A drip in a bucket. A drop in time. But to someone with CF, being well aware that life will likely be decades shorter than that of friends and family, is a marathon of hopes, an endless endurance of freedom, and a bountiful path of health.

Before either Joshua or I recognized it, over a couple hundred minutes of dialogue had passed, and neither he nor I had consumed a bite of our lunches. Time just seemed to fly, with two new friends jabbering away like two old friends who had not seen each other in a long time. 

Just as it is factual that we had never met before this lunch get together, we had been brothers since both of us were diagnosed with CF a decade and a half apart. We had just never before been introduced face-to-face.

As we got up from the table, Joshua and I agreed to do this again. Who would have imagined that a conversation greater than an eighth of a day would be insufficient? Two people with Cystic Fibrosis would.

 

 Help Others Live STRONGER and LONGER- 

    

 

Rod Spadinger, 47, has Cystic Fibrosis. Born and raised in Hawaii, he moved to Dallas, Texas, where he underwent a double lung and liver transplant in August 2017. From the age of four, until he was diagnosed with Multiple Sclerosis as a junior in high school, he ran at least five miles a day, in order to keep his lungs clean. Rod’s exercise routine now consists nearly daily visits to the gym. He is on a continuing journey to connect with fellow Cystic Fibrosis patients throughout the United States, having driven over 24,000 miles in 2019 with these travels. Inspired by The Lord and his angel donor, Joni Marie, who provided him with her gifts of life, Rod published the memoirs of his post-transplant journey, and celebration of this second life, in the book “A Collection of 50 Stories Inspired by my Ange Donor, Joni Marie”. He is currently compiling a subsequent publication, primarily consisting of documenting his road trip encounters with fellow CF Warriors. Rod also founded a CF focused non-profit organization, Ashleigh’s Life Foundation (https://ashleighs.org/the-journey), and is currently establishing the non-profit organization, CF Vests for Life Foundation.  Connect with him on Facebook under his name, and on Facebook at Cystic Fibrosis Artists; Two New Lungs, One New Liver – A Year and Beyond with Cystic Fibrosis; Cystic Fibrosis Road Warrior – Ashleigh’s Life Foundation; and CF Vests for Life Foundation.

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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