Live like you were LIVING

Photo by cottonbro on Pexels.com

I first learned that Roger, my dear friend and one of the most inspirational people I have ever met, has Cystic Fibrosis, a hereditary and terminal disease that affects one’s lungs and digestive system, when we were twenty-eight. We were working on planning our high school reunion together with some other friends, and I had something to drop off to his house. He leaned inside the car with his infectious laugh but then started coughing. His cough sounded serious, and I told him he should see a doctor about his cough. He looked at me straight in the eye and stopped laughing. He looked at me much longer than one looks into another person’s eyes for what seemed like an eternity. He said to me, “Don’t you know?” without any judgement, disappointment, hurt, or anger in his face or voice. I asked him what I was supposed to know, and he simply said, “I have Cystic Fibrosis.” I apologized for my callous remark and went on my way home. When I arrived home, I immediately turned on my computer to look up Cystic Fibrosis and cried. I cried a LOT. It seems at that time, the average life expectancy for someone with CF, as it is commonly called, was twenty-eight years old. The average life expectancy for Roger had already arrived. I further read about the disease and how it takes its toll on someone at the end, often with hemoptysis, or bleeding in the lungs. It made no sense to me, as Roger was both the very first and very last person on the dance floor, outlasting EVERYONE else. He was always a wonderful dancer, and his feet slide so easily on the dance floor like Michael Jackson with the rhythm of Bobby Darrin, Fred Astaire, or some great dancer from long ago. Evidently, he got his dancing ability and natural rhythm from his Mother. It made no sense to me that Roger had endless energy, more than many of my contemporaries, and had a terminal disease. I learned a few weeks later from a mutual friend, Allen, that in elementary school the teachers rounded up the students for an important meeting about Roger. They told the students that Roger was a very sick child and might not live to see his sixteenth birthday. That’s the thing about Roger; he has outlasted any prediction for his life expectancy. Currently he is eighteen years status post double lung transplant, which is amazing.

There was a song years ago by Tim McGraw called “Live Like You Were Dying” that I always found so inspirational. However, Roger’s approach is the total opposite. The key to understanding Roger is to know that he lives like he were LIVING, not DYING. He is currently facing going back on the transplant list for his second transplant surgery for both lungs, as his first transplanted lungs have suffered rejection that has slowly diminished his lung function through the past few years. Yet, he trains at the gym with a personal trainer several times a week, pushing himself to cardio workouts that even healthy people might not be able to handle. Roger has enjoyed a lucrative career and married the love of his life, Ronald. Roger once told me long ago that he found it strange that many of the young adults in the Cystic Fibrosis clinic that he encountered at the local hospital never went to college or took up a career, as they knew their life expectancy was short, and it wasn’t “worth it”. Certainly there were those among them in the group that DID go to college, but it seemed to Roger odd that so many did NOT. Instead, Roger went to college and hired a financial planner to help come up with a long-term plan for his financial future. He continued to dance well into his middle adult-hood while he could, often the last person on the dance floor.

When I recently talked to Roger about the double lung re-transplant he would face within the next few years when appropriate lungs that were a “match” for him became available, I asked him how long the new lungs would last. I could hear his beautiful smile through the phone, when he told me he had no idea how long the lungs would last, as he didn’t see that as useful information. They would last as long as they would, and that knowledge was fine for him. You see, Roger had always lived like he was LIVING. In absence of any information otherwise, he continues to move forward and is one of the most inspirational people I have ever met. Thanks to advances in treatments, according to the CF Foundation, the average life expectancy for someone born with CF in 2018 is forty-six, and Roger is eight years beyond that. When he was hospitalized as an adult, he had to go to the pediatric hospital because that is where his doctor had privileges, as CF was mostly a childhood disease years ago. Thanks to advances in treatment, Roger goes to the adult hospital now, hopefully for many many years more. How long? We don’t know because we won’t even ask!

“He said, ‘I was in my early 40s,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days
Lookin’ at the X-rays,
Talkin’ ’bout the options
And talkin’ ’bout sweet time.’

I asked him, ‘When it sank in that this might really be the real end,
How’s it hit you, when you get that kind of news?
Man what’d you do?’
And he said,

‘I went sky divin’,
I went rocky mountain climbin’,
I went 2.7 seconds on a bull named Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I’d been denying.’

And he said, ‘Someday I hope you get the chance
To live like you were dying.’

He said, ‘I was finally the husband
That most the time I wasn’t,
And I became a friend a friend would like to have.
And all of a sudden goin’ fishing
Wasn’t such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look
At what I’d do if I could do it all again.
And then…

I went sky divin’,
I went rocky mountain climbin’,
I went 2.7 seconds on a bull named Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I’d been denying.’

And he said, ‘Someday I hope you get the chance
To live like you were dying.’

Like tomorrow was a gift
And you’ve got eternity
To think about what you’d do with it,
What did you do with it,
What can I do with it,
What would I do with it.

Sky divin’,
I went rocky mountain climbin’,
I went 2.7 seconds on a bull named Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin’.

And he said, ‘Someday I hope you get the chance
To live like you were dyin’.’

To live like you were dyin’.
To live like you were dyin’.
To live like you were dyin’.
To live like you were dyin’ “

-“Live Like You Were Dying” written by Tim Nichols and Craig Wiseman and sung by Tim McGraw

*Names were changed to protect the privacy of the individuals in this blog entry

12/13/20: Roger was hospitalized this week because he was covid-positive and had pneumonia. His husband was covid-positive and symptomatic as well. Roger was released from the hospital a few days later and is recovering at home. That man is like a cat with nine lives, continuing to live like he was LIVING and mentioned to me his knees were getting a little stiff. I told him it was just because he was just getting old, and we laughed. Feels so good to hear Roger’s infectious laugh again.

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