Don't make me turn this van around! RV Edition

I’m coming up on the third anniversary of the spring day that I collapsed at home from a Type A aortic dissection. It was the most serious in a series of medical events caused by vascular Ehlers-Danlos Syndrome. There’s no cure for vEDS, no “remission,” and the only treatment is to avoid the physical and mental stresses that I unknowingly punished my defective arteries with for 42 years.

Anniversaries like this are strange. I’ll never forget the date of my first aneurysm: Dec. 4, 2015. I started writing this essay on March 4, 2019 – forty years from the day my mother died from a heart attack that we now know was caused by vEDS. The date doesn’t pass without a feeling of how everything changed, yet I don’t even know what my mom’s birthday was.

I often think about how much has changed in my life since April 12, 2016. I had to stop coaching little league. I’d never lift 35 lbs again. I’d never run again – not to avoid rain or to catch a plane. Rock climbing – out. And perhaps I’m lucky that I shouldn’t attempt any sort of heavy-duty home improvement project.

And April 12, 2016, was the last day I worked. I woke up three days later and – in an example of the sick American disease of work-over-everything-else – I asked for my cell phone so that I could check emails – in the ICU. Surely I had customers who were irate at missing their deliveries. I had bids and contracts due. While I was unconscious, 9 years of work, and over 100 accounts were turned over to another salesman. It’s amazing how something that was so important to me on a daily basis – was suddenly utterly inconsequential.

In all the excitement of still being alive, there was still something very wrong with me. Seemingly healthy forty-two year old men aren’t riddled with aneurysms and dropping on the dining room floor from aortic dissections.

For a while, the task of recovering from the physical trauma of surgery, was enough to keep me occupied. I had to rehab my left leg. I had to regain my balance and stamina, heal massive wounds, and overcome pain and fatigue. June 2016 were my darkest days, and my 6’3” frame had only 149 lbs on it. For the next year, every little twinge of pain from the top of my head to my waist was the next “big one.” On my 43^rd birthday, I merely wished for a 44^th. Now, I’m 45, and my thoughts turn to how this affects my family more than it affects me.

Meditation help from Muscle Shoals, Alabama

During my time in hospitals music offered a practical way to block out the sounds of beeping medical equipment, people talking in the hallways, and the ever present sound of my thumping heart. At home, music became a form of meditation – a way to get my mind off the situation. One artist in particular, Jason Isbell, was a major part of the soundtrack to that period of my life.

He wrote a song called “If We Were Vampires”.  He sings it with his wife, Amanda Shires. It’s heartbreaking. The message is that someday one of them is going to have to live without the other. It’s the certainty of that loss that gives their life together so much to cherish. The song came out at a time that I was coming to terms with how my mortality affects Monica. The chorus says:

It's knowing that this can't go on forever
Likely one of us will have to spend some days alone
Maybe we'll get forty years together
But one day I'll be gone
Or one day you'll be gone

It’s about the saddest damned song ever written – and Isbell is known for sad songs and also his sense of humor about it:

Not all of his songs are depressing –  some are hilarious, but sometimes they are just so beautiful I want to cry.

Just as I’ve had to face the reality that my life will be very different, my family had to adjust to new expectations. The timeline is altered. In a weird way, I’m the lucky one. If I die, my work is done. It’s my wife and kids who have to cope with the loss of a husband, a life without a father. Honestly, some of it is too hard for me to dwell on. Rather than try to prepare my kids for what daily life would be like without me, I focus on being an example, and following my doctors’ orders so that I live as long as my condition will let me. Whether or not I find spiritual satisfaction is sort of unimportant compared to what Monica and the kids face.

I take the most comfort from having witnessed Monica’s strength. She has faced every challenge without flinching. She hammered the phones and emails to get me the best care. She found her own peace by taking up mararthoning and baking – which go nicely together. Her reaction to adversity is to find solutions.

People often ask how we cope with my “situation.” The “situation” being the threat of sudden death or – at best – the inevitability of being thrust into another period of difficult hospitalizations. But don’t we all face uncertainty in life? I was just operating under some notion that I was exempt. Three years removed, it’s easy to feel like life is pretty normal. But it’s taken a lot of deliberate reflection and work to get to where we are.

I feel somewhat lucky to have had the chance to gain a clear appreciation for the beauty of life. My mother was devout in her faith, but she didn’t get a warning like I did. My kids will have Monica, the rock of our family, just as my siblings and I still had a father who wasn’t afraid to show his love.

But it’s still hard when I think about what this is like for Monica. Monica has to consider that we might not retire together at 65. The arc of our relationship is complicated by the fact that “until death do us part” is not an abstract concept relegated to “old age.” None of us has any guarantees in life, but Monica faces a different probability. After I’m gone, Monica will likely meet someone else and be married to them far longer than me. That’s a lot for me to wrap my head around. It’s not that I’m hung up on her being married to someone else. I’ll be gone and I want her to be happy.  But it’s painful to think that someone else could be a part of my kids’ lives the same way my stepmother was the only mother I really knew. But I’d want them to have that love. 

Ultimately, I have to leave these hypotheticals alone, because I have no control over any of it. The fact is, we can prepare for the inevitable – but we have to live for each day. People have said to me, “You’re so lucky you don’t have to work.” I know they mean well, but believe me, I’d take the stresses of a job over a median life expectancy of 48 years. The really maddening thing is that people shouldn’t wait until vEDS or a car accident or cancer to start paying attention to what matters. I’m not perfect. I still need reminding to put down my phone or close the laptop, and take the kids out to the park.

I love the story of how Jason Isbell’s wife gave him a hard time for laying around watching reality shows. He promptly turned off the TV, wrote a song and won a Grammy for it.

If we were vampires and death was a joke
We'd go out on the sidewalk and smoke
And laugh at all the lovers and their plans
I wouldn't feel the need to hold your hand
Maybe time running out is a gift
I'll work hard 'til the end of my shift
And give you every second I can find
And hope it isn't me who's left behind

Isbell has stared into the abyss of addiction, and his experience has shined a spotlight on the things in his life that matter. I’ve been struggling for months to find the words to impress upon people how good life can be when it is simplified to focus on what is important. Wouldn’t it be great if everyone could find that spotlight, without facing tragedy?

Last summer, we set up camp beneath the cliffs of Ghost Ranch in Northern New Mexico. It happens to be where they filmed scenes in City Slickers and it was one of our favorite stops on our summer long journey. The camp store had a copy of the movie on DVD and, in a blasphemy to the wilderness we inhabited, we watched it in our tent. Who knew that the meaning of life can be found in a Billy Crystal comedy? There’s a scene where Curly, the tough old intimidating cowboy played by Jack Palance, gives Billy Crystal his philosophy on life. He holds up his finger and says, “One thing. Just one thing. You stick to that and the rest don’t mean shit.” Crystal’s character is confused, “But what is the ‘one thing?’” To which Curly responds, “That’s what you have to find out.”

And that is the truth. It is as plain as day when you see it. If Curly’s words don’t resonate with you, you’re not there yet.

Within these remote confines, we watched City Slickers on the hollowed ground in which it was filmed. And Curly taught me a valuable lesson. 

When the movie ended, I walked out of that tent and I looked around. Red cliffs glowed against the night sky. The air smelled of dust and juniper and sagebrush. I had everything I needed. My son came outside with me and we saw his first shooting star together. I try to take that feeling everywhere I go. Whether it’s something mundane, like sitting in a coffee shop, writing. Or having a midday “date” with Monica to a museum while the kids are at school. When I feel myself deviate from this feeling of peace, I go back to the basics and take a breath, read the books, and do the things that got me there. It’s within our reach. If you stop to smell the roses, you’ll start to see that there are roses everywhere.

Post script: How to test your arteries 

More than a year removed from my last surgery, Monica walked in the door and said, “You’d better sit down.” She isn’t one for dramatics. My heart skipped a beat it doesn’t have to spare. She struggled to hide a smile. “I just got a call from Sylvia. She wanted to know what you’re doing Tuesday.” Sylvia is a wonderful friend we know through the local arts community. We’d just run in to her at the John Prine concert, where her friend Amanda Shires had been the opening act. “You and Sylvia are flying to Nashville. Jason Isbell is giving a special concert and you are going back stage after the show.”

If my arteries had burst from the nervous excitement, it would have been worth it. There isn’t enough space in this sidebar to give all the details of that amazing trip, but I will sum it up in one moment: Back stage, there was not a “meet and greet” for fans. It was just the artists and their friends. I was standing there having a casual conversation with my favorite living musician – someone whose music had provided comfort at a crucial time. My heart was pounding out of my chest as I tried to have a coherent discussion about different music venues in Florida. I wasn’t only nervous because I was talking to Jason Isbell – as if we’re just hanging out at a party – but Emmylou Harris was standing two feet behind me chatting with Gillian Welch. It was an alt-country, folk, rock and roll overdose. I felt like an oversized “Make a Wish” kid when Amanda Shires hugged me goodbye.

Just hanging out with my friends.

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“Don’t make me turn this van around” is written by Jonathan Kile, and approved by Monica Kile. Check out Jon’s periodic column, “So How’s That New Book Coming?” at Creative Loafing – Tampa. His 2014 thriller, The Grandfather Clock, is available free for Kindle on Amazon.com and other eReaders at Smashwords. Reach him at jkilewrites@gmail.com. Monica is a marathoner, baker, freelance grant writer, non-profit consultant, tour guide, and connoisseur of 70s rock lyrics.