The good, the bad, and the funny.
Looking back, I probably could have tried less dramatic things to get out of visiting my in-laws — but then again, I have never been afraid to go big. So, instead of getting up at dark-thirty to go to the airport, I went into respiratory failure.
It was the middle of August 2017, a week after my 36th birthday and five years into my battle with ALS, that we had a life changing experience. My wife was four months pregnant with our first child. We were just your average young couple, living in sin together (we weren’t even married yet) in my parents’ house while dealing with a terminal disease.
I had to wear a breathing device, very similar to a CPAP, for most of the day and every night. Although the details are a little fuzzy, I remember the barrage of alarms coming from the machine. If those weren’t a clear enough indicator that something was very wrong, there was the blood dripping from my nose. My wife got my mom and told her that we should probably call 911. Although they were both scared, their lack of medical knowledge probably helped them stay relatively calm until the paramedics arrived.
I don’t remember anything from the ambulance ride to the hospital. That’s probably because I flatlined. I died. Albeit briefly, it was long enough for the paramedics to perform an IO. Intraosseous infusion (IO) is the process of injecting medicine directly into the marrow of a bone. This provides a non-collapsible entry point into the systemic venous system. This technique is used to provide fluids and medication when intravenous access is not available or not feasible.
The next thing I knew, I woke up with a tube jammed down my throat. I had been intubated, just like the scenes on every ER television drama. The patients on TV usually wake up and quickly try to move, tugging at the hoses and tubes that seem to be everywhere. Their eyes are full of equal parts confusion and fear because they can’t speak. Fortunately for me, I was pretty much fully non ambulatory and unable to speak upon arrival, so I didn’t move or try to talk. I just lay there in the ER trying to figure out how the hell I’d gotten there.
The next nine days were spent in the ICU, trying to answer questions like — — What the hell happened? Would I have to get a tracheotomy? Did we still have to visit my in-laws?
My wife never left my side. She slept in a recliner that looked like it was constructed around the same time as the iron lung. The hospital staff tried to make her leave, multiple times. But when you are unable to move a muscle to hit the call button, it is imperative that you have someone that knows how to communicate with you. She knew I needed her, and she needed to be there.
The decision to get a tracheotomy was something that I had always known I would ultimately make. I just didn’t expect to be forced to make it. Only 10% of ALS patients choose to get a trach. The cost and quality of life seem to be the biggest factors. The cost of care can easily reach $100,000 a year, and that is all out-of-pocket, as Medicare doesn’t cover long-term care. As for the quality of life, I was already confined to a power wheelchair and had lost the ability to speak. I figured, is it really going to make a huge difference if I am connected to a ventilator? It’s not like it was going to wreak havoc on my golf game!
It’s been three years since I became a less agile Iron Man. The first few weeks after the surgery were absolutely full of fear and uncertainty, most of which stemmed from the insanely small amount of training that was offered to our team. Imagine being a teen mom and leaving the hospital with quintuplets and each of them was hooked to a baby life support machine! Talk about ill-equipped.
The instant and most common feelings you hear most people have after a near death experience are a mixture of, “I’m going to live everyday to its fullest” and “I will no longer sweat the small stuff.” I don’t recall ever having either thought. I don’t know if they were too clear or concise to formulate at the time, or maybe it’s because I’m just not your average bear.
Looking back now, the first thought that actually comes to mind is actually how many compliments I received about how good my face and skin looked. Pretty vain, right? But the trach meant that I no longer had to wear the breathing mask that was ruining my complexion and my self confidence. Now that I had a hose connected to my neck instead of a prop from Top Gun that actually breathed for me, my body was actually able to rest instead of fighting for every single breath.
My quality of life, not just my pores, improved dramatically and have continued on the same trajectory. My wife gave birth to our beautiful baby girl four months after our stay-cation in the ICU. We were able to get a massive suite at the hospital, so I could spend the night with my wife and Elliott Monroe. We opted for a much shorter stay this time though.
In between the two trips to the hospital, we even got married. It was a super simple ceremony at the courthouse, but it was absolutely perfect. The bow tie was a little tricky around the trach, but we made it work. My beautiful bride, 8 months pregnant, looked amazing in a dress we bought the day before.
The overall trajectory of our life together has continued to soar, but that doesn’t mean it’s been a straight line. What fun would that be? We’ve created a couple of companies, some have worked while others have failed. We have discovered some incredible relationships, but we have lost some too. Here’s what I now know:
- Faith is paramount — Whether it is in Jesus or Jo-Bu or something in between, it’s imperative to believe in something bigger than yourself
- Failure is not a dirty word — I’ve become more accepting of failure— and that is not due to complacency. It’s because of the knowledge that with every business flop or fizzled friendship, I will survive and come out better equipped for the next one.
- Thoughts are things — Goals are just cute thoughts until you write them down. Manifest your future, make a dream board, and whatever makes you feel a little uncomfortable — do that.
The best lessons I have learned since taking a u-turn at the big white light are pretty simple, but aren’t the best things in life usually the simple stuff?