This blog has been quiet through the fall and into the winter. Not because we aren’t busy, but because our lives are consumed with the every-day habits of a family with two kids. As much as we love the road, we like being home just as much (if not more). Tempting as it may seem to pull up stakes and live in the shadows of canyons on Bureau of Land Management property – our kids setting campfires and snaring rabbits for dinner – we wouldn’t give up our life in St. Petersburg for anything. Here are some thoughts on the year and some highlights while our sleeping bags have been in storage:
As I look toward 2020, I’m thankful that 2019 was another uneventful year, medically speaking. I’m connected with a close-knit online community of people with vEDS and there have been some heartbreaking losses and several who are fighting for life daily. I’ll go back to Cleveland in less than two months for my next check-up and hope they tell me I’m getting boring. Back in 2016, on my 43rd birthday, we came upon one of those giant chalkboard “wishing walls” on the side a building near one of my favorite coffee shops. Without being dramatic, I merely wished for a 44th birthday. 2016 was that kind of year. If you’d told me that I would avoid the hospital for the next three years, I wouldn’t have believed it.
I’ve been lucky. But I’ve also made some of that luck. The other day I was listening to a powerful podcast interview with another man in his 40s with vEDS (Katie Wright’s Staying Connected show is excellent). He suffered a major aortic dissection after a particularly stressful incident at the restaurant he owned. I’ve been lucky to avoid stress and part of that is learning to take things in stride, meditating regularly, and sticking to my doctor’s recommended physical limitations – even when we’re caught in a lightning storm in the Appalachian Mountains. You have no idea how many opportunities there are for a 45 year old man to lift something weighing more than a very small child, until you have to decline every single time. “Sorry, I’m not allowed to lift that.”
I digress. In avoiding stress, I’m not shut in a cave watching TV. I volunteer on the board of a local literary organization and help raise money for the school’s PTA. And I help out with several other organizations dear to my heart. Monica organized a big 5K fundraiser and ran another marathon. I should pause here, because I originally wrote about 2,000 words about how she went out to Sacramento to try to set a “PR” and beat the 4 hour mark at the California International Marathon. She absolutely shattered her expectations by qualifying for the Boston Marathon with a 3:38:41.
Here are a few highlights of our fall:
She’s in charge.
Halloween is serious business in our neighborhood. A busy social calendar meant that we were the only ones at an art event in costume. I think people expected us to break out in song. We dressed as John Travolta and Olivia Newton-John from Grease (although Monica is the only person who prefers Michelle Pfeiffer and some guy no one remembers in Grease 2).
Almost an hour quicker than she ran the New York City Marathon last year.
Speaking of New York. We finished out 2019 with a quick trip to the Big Apple where we crammed in a bunch of big city Christmas fun. And since a day on vacation in New York costs about as much as a week anywhere else, I predict we’ll be doing a lot of camping in 2020.
It’s a family tradition to take a picture with Hans Christian Andersen – he’s rumored to be my great great great uncle of sorts. From the Lower East Side Tenements to Radio City to the Met and Times Square, we made the most of the season’s short days.
I share all this because when you Google vEDS, there’s not a whole lot of positive news. I hope a few people will leave Web MD and find this page and think, “Well, this guy has vEDS and his life isn’t so bad.” For me, the holidays are a time of milestones and I find myself reflecting on the past and the future. I enter 2020 grateful and hopeful, and I hope you do too.
“Don’t make me turn this van around” is written by Jonathan Kile, and approved by Monica Kile. Jon’s 2014 thriller, The Grandfather Clock, is available free for Kindle on Amazon.com and other eReaders at Smashwords. Reach him at firstname.lastname@example.org. Monica is a leader of a local non-profit, marathoner, baker, tour guide, and prolific bath taker.