Chapter 22: Love & Life Actually

The author of this whole narrative attempts to break the fourth wall, forcing himself to rewrite half the chapter.

I had a VERY important trip to Boston recently. It may very well be indicative of whether or not I’m on placebo. Dreaming every night about how it would go, I penciled out my vision weeks ago should it turn premonition. I called it “Chapter 23.” But reality threw a proverbial wrench into my methodically built and well-oiled narrative. Despite the literal death grip I have on the steering wheel of life, things didn’t play out the way I scripted them.

There’s still pivotal content in my original construction so I’m not going to scrap it all together. Instead, I’m going to present to you a two-part chapter. Everything from the original writing actually happened. That is, right up until the point I attempted to manufacture my own miracle. Part one will take us all the way to that juncture. Then, much as my life was derailed, we’ll pick up the pieces in the second installment with the unfortunate edit of my lifetime.

Part 1: Love Actually

My eyes opened to the sound of a familiar voice. Only this time it wasn’t through the door in my bedroom. I was somewhere else.

“You’re all done,” Jamie assured me.

Slowly my blurred vision came into focus. A hospital. I looked down and saw I was wearing a gown.

“Your surgery went great!” I picked up a not so familiar voice, from whom I gathered was my nurse’s.

Suddenly, I remembered being prepped what felt like five seconds ago.

Wow. That was fast.

This wasn’t my first time “under the knife.” I had to have my pectoralis major reattached to my shoulder five years ago after I ruptured it desperately racing to win a CrossFit competition. I recalled how strange a sensation waking up from the anesthesia was back then as well.

However, this was my first time getting a feeding tube. And now that I was fully aware I had been recently stabbed through the abdomen, I coincidentally became aware of how much pain I was experiencing.

“Are we sure this went great? It doesn’t feel like it,” I wanted to respond but didn’t for lack of the agency.

Although I could still eat and drink, the former had become such a chore that I started to lose the battle of maintaining my weight (very important for slowing ALS progression). With an ever weakening tongue and constant fear of choking, the joy of eating food had retreated long ago.

All my calories had instead been coming in the form of various protein smoothies. Jamie and I, at the urging of my medical team, thus agreed it would be best to take proactive measures and get the tube going should adequate nutrition by mouth become an impossibility. Besides, after the procedure, I could still eat the few foods I actually still craved. It’s not like that option went away.

Back to the searing pain in my gut. I knew as soon as all the anesthesia wore off, I was gonna be in trouble. Apparently, the nurse anticipated this as well. She gave me fentanyl through my IV.

Everything from here on out took me by surprise. And if the title leads you to believe this was gonna be a love story, I apologize. Because what ensued could only possibly be found in the horror section.

Most patients walk out of the hospital that very day they have their PEG tube placed. Sure, ALS patients have to stay the night for monitoring, but I was still under the impression that this was a relatively painless procedure that could be managed with Tylenol. That was most certainly NOT the case for me.

Getting prepped for my PEG tube surgery at KU Med.

Fentanyl really only does its thing for about 45 minutes, then it fades. And when it did, the pain was so bad I could hardly breathe, let alone speak. I had to type my wishes out on my iPhone. It was an incredibly frustrating and isolating experience but it certainly made me more thankful for technology.

That night, I didn’t sleep. I just counted the seconds till my next fentanyl injection. Compounding my discomfort, the nurse botched a catheter placement. I’ll spare you the details, but that whole fiasco may have actually been worse than the knife I was convinced they had left in my stomach. Furthermore, I was sick at the time (not COVID but a cold), an aside we chose to keep that way out of fear the hospital would cancel the surgery. So every time I inevitably coughed, it felt like my abs were being ripped apart. On top of that, due to the nature of this particular operation, I could not eat or drink for over 24 hours. My throat devolved into a raw inferno.

They kept me another night due to the unrelentingly elevated pain levels. On the bright side, I could at least sip water now, a luxury I had not appreciated sufficiently. However, that was the only highlight.

Never before have I not had a nurse who I didn’t think was the most amazing person in the world. That streak was shattered when the night shift took over. This absolute nightmare of a healthcare practitioner failed to give this ALS patient a call button, “forgot” my pain meds, rolled her eyes when I attempted to communicate, and was super aggressive with my freshly inserted feeding tube. Unable to move or formulate any audible word, I’d never felt more helpless or vulnerable. It was a sneak peek into a life some of my more advanced pALS (persons with ALS) friends know all too well; a future that terrified me.

My dad was fast asleep on the couch while all this torture unfolded. He eventually awoke and I beckoned him to come nearer with a simple hand gesture. Closer and closer he edged as I kept waving him in until his ear could surely feel my breath. That’s when I somehow managed to softly whisper…

“You’re the worst caregiver ever.”

Neither of us slept following that one-sided exchange. I think I got lost on TikTok watching bowlers doing trick shots and Dad went down an equally odd rabbit hole of his own. Literally, ANYTHING to pass the time.

After much procrastination, the sun finally appeared and with it my wife. Like a white knight, Jamie came valiantly riding into the ward and demanded to confront the butcher they were calling a nurse. Short of our wedding day, I can’t recall ever being more excited to see her. Fortunately (for all parties involved), the nightmare had already left the building, presumably to go home and sort out her issues.

Next came time for me to shower, and the lessons in humility resumed. Jamie led me to the bathroom and proceeded to give me a thorough scrub down.

“So this is what love actually looks like,” concluded I to myself in a moment of revelation.

Despite still being in massive amounts of pain, the hospital was evidently tired of dealing with me and I was discharged. That’s when I was treated to my first-ever wheelchair ride, and I must say the view from down there sucked. If you have a choice in the matter, hard pass.

I struggled mightily to get into the car. All I could think about in that moment was how could I possibly recover in time to perform well on my upcoming functional reassessments in Boston? They were less than two weeks away. And the last time I was there, I openly vowed to return stronger. Astutely aware that the magical window (to where I could expect to see results should this drug actually work) was rapidly closing, I remained steadfast in my promise.

When we got home, Iris was very curious about daddy’s “owee.” It’s strange to think that all this will become her new normal. She’s already gotten used to my BIPAP mask which seems scary enough to me. But I suppose it isn’t too far a stretch considering she’s been seeing people wearing masks for the majority of her life. I can’t imagine having children old enough to warrant explanations for all this insanity (COVID and ALS alike). I believe Jamie and I have it easy in this regard, though I fear there are some excruciatingly difficult conversations on the horizon.

While we still had time to craft answers to some of life’s hardest questions, the clock had run out on Jamie’s maternity leave and she went back to work the following day. I was feeling slightly better and wanted to do SOMETHING useful so I decided to bring her lunch. It turned out to be a poor decision on my part. I caught my drop foot on a step in our garage and took a comically dramatic spill. Shortly after, the intense pain returned and I was treated to another unwanted first: an ambulance ride.

The view was even worse than that from the wheelchair. I was rushed to the nearest ER where I suffered for two more hours before a not so young doctor entered the room, and with a straight face, told me that imaging had revealed I had (and I quote), “the second-worst case of constipation I’ve ever seen in my life.”

This, if I’m completely honest, disappointed me a bit, as I’m accustomed to coming in first place. But then I started to fathom what the gold medal guy must have gone through and my senses returned.

Not to be outdone in the suffering department, my exhausted yet dutiful wife, after her first twelve-hour shift in three months with two sick kids at home, found herself immediately back in a hospital caring for her sick husband. My guilt reached new heights as I had officially completed Jamie’s transformation into a beast of burden. I could see she was near her breaking point. Even more, the girls needed her back home. So after I was admitted, my dad came in relief.

Again, I’ll withhold the particulars of the following night. But my care team spared no weapons of modern medicine to get me cleared out. And my dad… let’s just say he more than redeemed himself as a caregiver for all the shit he had to deal with!

Yes, the opportunities to demonstrate what love really looks like have become quite bountiful.

Come morning, I couldn’t get out of there fast enough. I was eager to get back to my routine, which included working out and increasing my body weight so I could ace my looming reassessment and secure my legacy. Every recent setback had buried me deeper and deeper into a hole.

I proceeded to psych myself up, “here’s where I turn it around.”

Re-entering the outside world, I started to work with a physical therapist to rehabilitate what function I had lost over the hellish past week. There were no shortages of loss. Most notable, the ability to walk unassisted.

I was making steady progress with my mobility, but the knife-like pain piercing through my core was still present. In fact, it was getting WORSE not the other way around. It got so bad that I unwillingly scored a novel hat-trick when I found myself back in the hospital for the third time that week.

This time, we waited well over three hours in triage watching medical professional after medical professional walk right past a woman writhing in agony on the floor. It was surreal.

After the most uncomfortable ER wait to date, I got brought in for some more imaging. While I awaited those results with bated breath, they gave me an anti-psychotic to ease the pain (narcotics were off the table due to my recent GI issues). In a twist of irony, within 15-minutes of receiving this “anti-psychotic,” I started to lose my damn mind. Prior to administration, they failed to disclose one of the side effects was “extreme restlessness.” That’s an unpleasant experience for anyone, but doubly so for the ALS patient who can’t get up and walk it off.

The scans eventually came back negative. They assured me everything looked normal. We started to wonder if the problem was the “T-tacks” that secured my stomach to the abdominal wall during surgery. Supposedly, these little buggers “fall out” on their own after 5 to 10 days as they’re only held in place by sutures. But internal radiology insisted they were not the cause of my discomfort and elected to leave them in.

Again, I was released from a hospital worse for the wear and with no acceptable answers. I even started to question my own toughness. Was this all in my head?

The following week, my ego and reassessment goals suffered another blow when I sustained a back and shoulder injury. Sadly, I fear it was from merely attempting to get out of bed (recall I still have no abs). Now I was wholly dependent on Jamie to dress, feed, and bathe me. The wheels were coming off. Boston was just days away and I was nowhere near fighting form.

I dove deep into my dad strength reservoir to find the fortitude to forge forward. I completed another two PT sessions with moderate success and posted them on social media to let the world know I was calling my shot. Aside from Simone Biles’ return to the podium in the ongoing Olympics, I was convinced I could still pull off THE comeback of the century. And before I could even respond to all the votes of confidence accumulating on my growing Twitter, Instagram, and Facebook pages, the clock ran out on me too. Soon, my brother and I were off and flying at thirty-some-thousand feet. It was miracle time.

My brother, Drew, and I en route to Kansas City International Airport.

Part 2: Life Actually

When we got back to our hotel room that afternoon, I knew what I had to do. My laptop remained left open from the night prior. I approached the desk and pushed a feeble finger into the delete key until half of Chapter 23 had disappeared from the screen.

“That’s what I get for taking creative liberties with God’s plan,” I scolded myself.

Still uncertain about where I stood with Him, it had become evident, beyond a reasonable doubt, that I was very much not in control of how this whole saga is going to end. Hell, I couldn’t even predict one chapter.

The pins were set up perfectly to resolve the archetypical hero’s journey. All I had to do was knock ‘em down.

Here’s a look at the rack…

Man is too preoccupied with modern day success to fully appreciate all that he already has. Man is humbled by a life-threatening illness and uncovers the errors of his ways. In his most vulnerable state, man is confronted with real adversity for the first time, and yet finds the courage to stand his ground and fight. Thousands see this and rally to man’s side. Man realizes that no matter what happens, he already “won” a long time ago. Man is gifted a second lease on life and, more importantly, a perspective worth more than any trophy or treasure.

Now, that’s a story worth writing! And we were most of the way there!! (I’m shaking my fist toward the heavens right now). Chapter 23 was SUPPOSED to be the beginning of that last bit. But I got a little too caught up in the shot calling and rolled a gutter ball in the final frame.

You may ask, what does the audacity to fabricate one’s own happy ending look like?

Well, I can tell you:

I march into Mass General Hospital to discover that not only had I stopped progressing, but also, I was getting STRONGER. Everyone on my medical team went hysterical over these findings. This was an epic breakthrough, not just for ALS but for the entire world of neurology. Nay, the entire world of medicine! I FaceTimed Jamie right then and there and we both immediately broke into tears of unimaginable joy. There was no denying the data. My ALS was in remission.

Of course, nothing from that last paragraph actually happened. That’s just a scene from my most frequent reoccurring dream.

No, what really transpired was after face planting at the hotel, I had to be rolled into the MGH research center in a wheelchair. My breathing score went down from 85% to 71% in the past month alone. Remember, it’s the breathing (or lack of) that gets most pALS in the final chapter. My ALSFR score (a rough measure of my function) took a nosedive to 27. For context, 48 is a normal healthy individual. pALS on average lose ONE point per month until they die after 2-5 years. Since the outset of this trial three months ago, I’m down 12 points. That’s a very aggressive rate of progression. And finally, the muscle testing. My strength in almost every segment of my body fell by 50%. These are devastating results for someone not in a trial, let alone a guy in the most promising one. I dare not speculate what all this meant. Nonetheless, it was a gut punch to my already wounded gut.

As already mentioned, upon returning to the hotel, my first and only act was to delete what was not meant to be. After that, I crawled into bed and went catatonic until eventually surrendering to sleep.

The following morning, bolstered by a steady stream of caffeine, I chose to rally. I had clinical appointments unrelated to the research study lined up all day. First on the itinerary, getting fitted for my new brace. The majority of my recent falls had been as a result of my drop foot. This device would remedy that issue by securing my weak ankle into a permanently dorsiflexed position. I had arrived in a wheelchair. But I WALKED the fuck out.

We then headed over to the ALS clinic to meet with the various disciplines on my team: Physical Therapy, Speech Pathology, Respiratory Therapy and Neurology. The most important visit coming from the latter when the mysterious source behind my intense, persisting abdominal pain was uncovered. And wouldn’t you know it? It was the T-tacks all along! As my neurologist was cutting them off, it felt to me like she had missed her mark and was instead slicing into my flesh. But, as my brother would later inform me, once they were finally off, a look of relief came over my face. For the pain had nearly dissipated in an instant.

The not so young neurologist felt compelled to comment (and I quote), “I’ve never in my life seen these fastened so crazy tight!”

I was back in first place where I belonged.

We departed Boston with a few small victories, but it felt more like losing. I had talked such a big game. How embarrassing. To save face, I uploaded a video of me walking out of the orthopedic center in my brace onto social media. An act I was proud of, but one that paled in comparison to the big reveal I had in mind.

To borrow a theme from the previous chapter, it’s time to play the hand I was dealt and let the chips fall where they may. To risk squandering the time I have left, trying to force a square peg through a round hole is an all-in bet I cannot afford to take. One of the few gifts ALS has granted me is a more accurate valuation of time. So, if I’m to prevent this tale from turning into tragedy, there’s a level of truth (which felt wrong a month ago) that I now understand I must accept.

We make plans and God laughs.

When I acknowledge this piece of fundamental wisdom, much like my T-tacks being removed, I’m suddenly released from undue suffering. Sans the weight of literally my entire existence sitting upon my chest, I can breathe again.

Conversely, the magnitude of direness has never before been both larger and more abundantly clear. But this is far from the last chapter. And despite the ending getting a significantly downgraded rewrite, perhaps the grand narrative will turn out to be even more compelling. Because nothing ever worthwhile in life comes easily. For ANYONE. Why would we expect any less from the greatest comeback story of all-time?

After all, a man can still dream.