Eight years ago I was diagnosed with a terminal diagnosis. If I had received that news this year, it would have been completely on brand. 2020 has been a mess. I know I’m not alone in wishing we could press redo when COVID seriously disrupted our lives. The past 9 months we lost our business we spent 2 years building right before we were set to break ground, had to downsize into a smaller (and much older) house that needs a lot of work, and almost got a divorce. Twice.
Regardless of this, my family and I are extremely grateful for 2020.
Before we get to the ways that I managed not to pull the plug (Literally. I am on a ventilator 24/7) at any point this year, a little background is probably in order. I have ALS, hence the terminal diagnosis and ventilator. I am completely paralyzed with the exception of my eyes and a few faint muscles in my face. But despite all that nonsense, I have a beautiful, strong, and supportive wife. We also have the world’s most amazing daughter, Elliott Monroe that will be 3 in February.
Are we the typical American family? No!
Was 2020 a typical year? Hell no!
Are we grateful? Fuck yeah we are!
As the pandemic started to become very real in March, we had to make an extremely difficult decision. We were set to start construction on Monroe Manor in a few weeks. It was going to be a custom built barn specifically designed for weddings and events. We had investors. We had a loan. We had spent the last two years working to get to this point.
It didn’t seem real and it sure as hell didn’t seem fair. A global pandemic. Really? The greatest virus since the Spanish flu in 1918.
Really?
The idea of opening a venue that sole purpose is to host large groups of people at the same time as the CDC was issuing social distancing guidelines was simply too risky. The decision was gut-wrenching. However, it provided the first point in this guide.
Faith is a necessity – I’m not talking about religion necessarily, but the decision to believe in something bigger than yourself is so bloody important. It’s not something that I ever thought about in my twenties but as I approach 40, I see its strength. It allowed my wife and I to find peace in the middle of an absolute shit show. If you don’t believe in the power of faith, talk to anyone who has been stuck in an elevator or someone who barely misses being a part of a fatal car accident.
I promise that no one ever utters, “Oh, thank you national highway travel association” was their first breath.
After we recovered from the loss of Monroe Manor, we decided it was time to get out of dodge or more specifically, Lakewood Ranch. Without the business we didn’t have anything tying us to the area. My family was close and we had lots of friends, but we had felt like we were on our own island of late.
Enter St. Pete and the next two points.
Change is a good thing – We were always planning to move when our lease ended. But I thought we would buy our first house nearby. After all, I grew up there and it was an award-winning master community. What’s not to love, right? It turns out that a lot actually.
My wife is from rural Ohio and before I moved back home after being diagnosed I spent a decade in NYC and Chicago. We could not be any closer to a city rat and a country mouse. She’d love a bungalow in a sleepy beach town. I’d prefer a loft in Soho. Fortunately, we now live within ten minutes from both downtown and the beach in St. Pete, Florida.
Buying a house during the pandemic was like getting a colonoscopy with a firehose. The process was exhausting and the renovations have cost more and have taken longer than expected. But the change has been amazing. We are surrounded by diversity in every sense of the word. No more chain restaurants. No more white people everywhere. (We are white) No more master planned community. Just a lot of welcomed change.
Less is always more – This is something that I firmly believe to be true. Accessories? Yep. Cologne? Yep. Hot wax for hair removal? Yes!
This lesson was difficult to see during the process. But like a big gay rainbow after a thunderstorm, we could see it loud and clear in all its beauty. (St. Pete has a great LGBTQ community). We ended a few relationships with friends that just didn’t belong in our new life. My wife never really felt a genuine connection to my hometown or my friends, all of which were from high school. People change. But unfortunately sometimes they don’t.
The move, the renovations, and losing Monroe Manor, all during a pandemic would have caused any strain on any marriage. Throw in a terminal diagnosis and the lasting feelings that come from a miscarriage, I’m surprised that my wife didn’t pull my plug! Everything that happened this year taught me the final point to this gratitude guide.
Shut up and listen – If your lips are moving, you’re not learning anything. I don’t know who said it first but I love it. I just wish I would have put it into practice sooner. Every relationship has to rely on clear communication to be successful. Now imagine the challenges of typing every single letter on a tablet with your eyes!
I mention the specific difficulties in our relationship solely to paint a picture and not to make excuses. We have been married for almost three years and it’s been quite the roller coaster of circumstances from respiratory failure and emergency tracheotomy to the government taking away my disability benefits. But my wife has been a champion. My wife is a champion.
We got married a year to the day of our first date. And for those of you that are bad at math, she was eight months pregnant when we stood / sat at the altar. Despite the amount of life we’ve lived, in the grand scheme of things, we’re just getting started. It took this dumpster fire of year for me to realize that I was not really honoring and protecting my wife. I am embarrassed to say it took having the same arguments in different circumstances to truly listen to what she was saying. For the closeness that I now feel to her, I am absolutely humbled and grateful for 2020.
There’s no doubt that this year will go down in the record books as colossal heap of shit. However, buried in the stink is hope. After all, I am nothing if not resilient and full of hope that this year’s challenges have taught me to keep my faith, to shut up and listen, and embrace change. Next year will mark my 40th time around the sun and I plan on making it one hell of a ride!