How do you know that you’ve stayed too long for lunch? When the waitress presents you with the same, identical tab, twice.

The conversation, which had been fostered from various years of Facebook followings and interactions between me and Cystic Fibrosis Warrior Stephanie Santana, led to that overstay at an eatery near her town in the Florida Keys. I had admired Stephanie over time for her personality, her talent, her tenacity, and her zest for being unique. 

I had long considered Stephanie to be an icon in the Cystic Fibrosis Community. Her artistic treasures have awed me for as long as I have recognized her works. On each Cystic Fibrosis Awareness Month for the past several years, I have successfully received Stephanie’s permission to promote one of her CF photos as my Facebook profile picture. 

The haunting image, void of life’s joy of color, emblazons the reality of Cystic Fibrosis. 

A nebulizer affixed to her face conjures a sense of lonely imprisonment, reflecting the lifetime sentence imposed by this disease. Piercing eyes. The silent scream of “Cure CF” sharpied onto her palm in clear and deliberate penmanship is thrust to the viewer, implying a plea for help from anyone who has the desire to care.

Who was this talent and Warrior, I had long wondered?

Given that she and I both have CF, the obvious precautions were discussed prior to our engagement at a Cuban-themed dining spot on Stock Island. Separate cars. Masks were to be worn. The friendly hug-greeting often shared between longtime friends was not an option, of course. All of the above are unspoken rules between CFers, established well before COVID-19 made those precautions the norm for the general public.

The conversations I had that day with Stephanie, owner of SaltiSkin Photography, were real. They transcended to the core of CF life.

Part of what attracted me to her personality on Facebook, for greater than six years, was the multitude of hair colors she had sported over that time. The blue. The light blue. Neon green. Purple. Orange. Red. I was always amazed by her inner strength, self-confidence, and the temerity she must have sustained to perform those acts, which I considered to be so bold. 

Stephanie disclosed that those changes allowed her to feel as if she was in control of her life. For those with CF, for a good deal of our existence, there are many aspects that we are not able to control. From the, at least twice-daily, treatments to hospitalizations to home IV antibiotics. For essentially, our entire lives. The genesis of what I discovered to be her liberating endeavors made absolute sense.

Through our respective masks, Stephanie’s composed of black cloth, mine of a blue paper fabric, we spoke about doctors, both poor and good. About medical ports, those embedded under the skin in the area of the chest, which many Cystic Fibrosis patients have. About her artistic talents and her pieces. 

About the Cystic Fibrosis Warriors who had gone before us.

We talked about the prospect of receiving lung transplants as we both enjoyed a healthy portion of the recommended, Pechuga de Pollo a la Plancha. Stephanie is pre-transplant, and I am post. 

Our views were similar when the topic of lung transplant was first broached to us years ago. Neither of us considered it as a viable option, initially. After a measured amount of contemplation, I wound up accepting the prospect in 2017. After extensive soul searching over time, she has concluded to agree to it as well, should a future need arise.

That topic led us to a discussion about getting old. And the fear of it. We, as CF patients, were never supposed to live long enough to become old. But now, with the reality of lung transplants, better medications (both of which are life-extending and lifesaving) the possibility they bring about is a mixture of hope and disquiet. 

How can one prepare for something that has always been proclaimed to be impossible?

There was so much for us to exchange. At some point in our conversation, our bill was set in front of us. After a slight acknowledgement to the server, our dialogue continued. And it continued. And continued. As we kept on talking, the restaurant slowly emptied. 

Eventually, a different waitress approached us and laid another paper slip on the table. This bill showed the identical charges which were displayed on the last paper that was provided roughly an hour previously. Stephanie and I realized that we were being asked to leave, in a most passive manner.

It is anyone’s guess how long we would have remained if we had not been, metaphorically, ushered out. So much talk about. So much to share. As only those with Cystic Fibrosis can.

During and after our talk, I thought about my angel donor, Joni Marie. How many deep and meaningful conversations did Joni Marie have with her friends? How many acquaintances did Joni Marie have who she would have liked to meet one day, as I did with Stephanie? 

With this in mind, it is a blessing that I was able to meet with and talk to this Cystic Fibrosis Warrior. In fact, each conversation I have going forward with future CF patients I will regard as a gift and a remarkable, precious opportunity. And I like to think Joni Marie would have it no other way.

So how do you know that you’ve stayed too long for lunch? 

What the waitress on that late afternoon did not recognize is that when two CFers get together, donning protective masks, enjoying the conversation perhaps more than the food, there is no lunch that can ever be too long.

 

**I engaged on my journey to tour the country and meet others with Cystic Fibrosis beginning in May 2019. My first visit was to Amber Goff in LaPorte, Indiana from my home in Dallas, Texas. I intended that to be a single road trip, a one-time adventure. However, I gained so much from my time with Amber, I was inspired to connect with more. As a result, I drove more than 26,000 miles during the subsequent nine months, and met 30 Cystic Fibrosis Warriors and their families.

Respecting CF infection control policies and guidelines, understood by myself and those I visit, during this and every meeting, precautionary measures were taken. Abiding by those guidelines, I wear a Medical Grade Facemask during the entire meeting, and maintain a distance of several feet between us, with no physical contact ever made.**

 

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 (www.ashleighs.org).  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; and Cystic Fibrosis Road Warrior – Ashleigh’s 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***

 

To receive an e-mail notification and link to the new CFLF blog post each week please e-mail erin@cflf.org to be added to our list.