‘Live in the moment’ because a moment may be all you have.

The only Zen you find on the tops of mountains is the Zen you bring up there. – Robert M. Pirsig, Zen and the Art of Motorcycle Maintenance

If you’re following this blog, at some point you might have said, “Man, I wish I could take a two month vacation. How are they going to pull this off?”

In an earlier post I declared us to be “normal people” who aren’t going to pull our kids out of school and raise them in the Serengeti. And that’s mostly true. We do not have the stomach to take our entire life on the road. We love our home, absolutely love our city, and we are active in the community.

So how will we do it? Are we school teachers? What other kind of job lets someone take off two months of work? Not many. For twenty years I punched the clock. And then the clock punched me. I spent my first decade after college in non-profit fundraising, which is rewarding. But that reward comes in the form of warm-fuzzies, which have a lousy exchange rate with the US dollar. Then, my future father in-law offered me a job as an outside sales rep for his oil distribution partnership. This wasn’t some cushy nepotistic desk job where I pretended to work and everything was taken care of. I knew nothing about oil, but I learned, and eventually became the top rep in the company. And we got rich! End of story! No… that’s not correct. Here’s what really happened: I almost died. Several times.

First, without warning, I had an aneurysm rupture in my abdomen. What’s that mean? An artery burst, sending blood flooding into my abdomen like a busted fire hydrant. Somehow, I remained conscious, was able to call my wife, and to top off my “luck,” one of the best Board Certified interventional cardiologists in the region and our city’s best vascular surgeon were at the hospital a mile from my house. They were able to repair my crumbling artery with a stent and save my life. But something was wrong with me – my arteries had the consistency of butter.

Several months passed, and before the vascular experts could figure out why a seemingly healthy 42 year-old man would rupture an artery like a 105 year-old chainsmoker, I suffered a Type-A aortic dissection and collapsed at home. This is the same thing that killed actors John Ritter and Alan Thicke. And this was happening to me, even though I’d never starred in an 80s sitcom. I would have died that Tuesday in April if my three year-old daughter hadn’t stayed home from school with the sniffles. Crying, she shook me until I woke enough to dial 911 and lose consciousness again.

I came-to in the ICU with a tube down my throat. Wires ran in all directions.  My wife and her friend were speaking to me gently as I woke, trying to see if I was “all there.” I looked around, attempting to get my bearings. I wanted to say, “I’m alive!” but the tube in my mouth prevented that. My wife’s friend said, in her matter-of-fact German accent, “You’re in the hospital.” I gave them a look that said, “No shit.” They both laughed and my wife said, “Yep, he’s all there.”  Then my wife said, “It’s Friday.” My last conscious moment had been on Tuesday.

Some time later, they removed the tube so I could talk – albeit in a hoarse whisper. My situation began to come into focus. I had undergone a nine hour open-heart surgery to replace my aortic arch and ascending aorta. (Did you even know they could do that??Me neither.) A few hours after the surgery, I’d developed a cardiac tamponade, which is not an expensive delicacy found in French restaurants, but a very serious case of fluid crushing the heart’s ability to function, leading to another three hours under the knife. More than once, my wife had come to terms with the idea that my time had come. She’ll get an opportunity to tell her story in this blog-space.

It’s difficult to describe the physical sensation I had after having my rib cage pried open and then wired back together. For weeks every movement, cough and sneeze, brought wincing pain as my torso healed. Almost two years later, I still sometimes get the feeling like something is popped out of place. In addition to that trauma, I had another 4-inch incision below my right clavicle that was closed neatly with what looked like standard office staples. At first, I couldn’t move my left leg, but I could wiggle my toes. The surgeon said it was the most difficult type of surgery and I’d had the best outcome one could hope for. This, from a guy who performed 4 heart transplants in a row the next day and was too exhausted to close my chest until Thursday.

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According to Monica, two nurses worked around the clock, to keep me stable. The towel on my chest covers a hole they left open in case they needed to go back in.

I was hospitalized for a month, regaining the physical strength necessary to do simple things like stand, walk, and manage basic household activities.The hoarse voice that we all assumed was due to three days of intubation turned out to be a more serious issue – my left vocal cord was permanently paralyzed during surgery. For six months I talked like Batman, until I had an injection that has temporarily restored some of my voice.

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It’s a little strange to pass out on a Tuesday and wake up Friday with a beard and new arteries. And I missed all the drama.

But I wasn’t out of the woods. In fact, I was just at the edge of the forest. A genetic test eventually revealed that I was born with an extremely rare condition called Vascular Ehlers Danlos Syndrome. Just as I was getting this news, a CT scan revealed that I had another aneurysm in danger of rupture and needed surgery to repair it. This surgery didn’t go well, and serious complications followed, including a deep vein thrombosis and the sudden mysterious development of a huge pocket of fluid around the graft in my aorta.  Afraid for my life, my surgeons recommended moving me to a more specialized hospital, and after dozens of phone calls and some amazing friends, my wife and I found ourselves on a medical jet bound for the Cleveland Clinic. It’s not good when you need a plane to take you to the nearest hospital that can help you, and it’s 1,000 miles away.

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I’m alive because I have an amazing wife who turned out to be a world-class medical advocate.

“You’re a complicated case, even for the Cleveland Clinic,” said the first doctor to see me. I was one of those interesting patients that they brought every cardiology and vascular resident to see. I could have been a guest star character on ER. It took them a week to establish that the fluid in my chest was not caused by infection, and we could move forward with repairing the aneurysm. They do this highly dangerous surgery in Cleveland like it’s a routine dental filling. Two days later I flew home commercial, walking under my own power.

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Monica loves this picture because our dear friend Danni packed a bag for me, and only included shorts, which paired nicely with my sexy compression socks. I left Cleveland weighing 149 lbs.

What all this means is that I live with a genetic condition that can have terrible consequences. My condition is rare and unpredictable. I could last 20 minutes or 20 years. My doctors have given me strict limits on what I can handle. I’m not allowed to lift anything that weighs more than 35 lbs and I must avoid strenuous activity and stress. Because of my vocal cord issues long conversations leave me winded, sometimes dizzy, and often bring on migraines. I try to approach everything methodically and with a peaceful attitude.

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This was taken 5 days after my aneurysm surgery in Cleveland. One thing I have found after all of this trauma is that I am very good at sitting.

On the outside, I look like a healthy 44 year-old guy, but on the inside I’m 80. It may take years for Social Security Disability Insurance to comprehend the nature of my condition, since it is usually diagnosed during an autopsy. But we were extremely fortunate that many years ago, we took out a very good private long-term disability insurance policy.  It wasn’t cheap, but it’s been worth every penny we spent. If there’s any practical advice I can offer after this experience it is this –  get long term disability insurance through a private insurer, or at the very least, sign up for group disability insurance at work (you’ll never miss the $10 per month).

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I have it pretty good.

I can honestly say that despite the bad turn my health took, every day has been better than before I got sick. My appreciation for my family and experiences is magnified. I don’t sweat the small stuff (usually) and I truly know what people mean when they say we should “live in the moment.” Even if that moment involves my daughter melting down over candy deprivation or my wife telling me to take a wrong turn. Because the alternative could be far worse. Back when I first got my diagnosis, my father gave me a great piece of advice: Don’t waste your time wallowing in the bad news. Show your kids how to live. 

If a two month cross-country-and-back road tip in a van with two kids isn’t living, I don’t know what is.

“Don’t Make Me Turn This Van Around” is written by Jonathan and 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 freelance grant writer, non-profit consultant, tour guide, and connoisseur of 70s rock lyrics.  

3 thoughts on “‘Live in the moment’ because a moment may be all you have.

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