Warning: this story contains pr*f@nity! But it’s the non-gratuitous good kind.
First, to set the stage. In 2011 I was diagnosed with a rare progressive and degenerative neuromuscular disease called Charcot Marie Tooth (CMT). It’s named after the three French scientists who discovered it more than a century ago. The myelin sheath around the nerves in my lower arms and legs is degrading, which disrupts their ability to charge my muscles properly. I was born this way but the symptoms didn’t manifest until adulthood.
Today we have no treatments or cures for this disease. Fantastic. I have the pleasure of watching my arm and leg muscles atrophy away, and there’s nothing I can do to stop it. This is why I work out like crazy to keep the muscles I do have as strong as possible. I’m going to need them as the others wear away. It’s strange to be trapped in a body that’s working against you. At times I feel sad, depressed and very, very angry. I am, after all, human.
I wear leg braces to help me walk, and I can’t do simple things like button a shirt or unscrew the gas cap on my car. I need others to open ketchup packets and roll my shirt sleeves for me. I don’t say this for your pity or sympathy. Far from it. I say it so you know why I did what I did as you read the rest of this story. I say it so that you’ll, well, laugh at my disability and grave misfortune as I sometimes try to do. That is, when I’m not angry about it. And admittedly, I can get pretty angry. But for good reason. Anger can sometimes equal energy.
My son, Kaleab (10), plays travel basketball. He can shoot the rock, and he’s got decent handles. He loves the game, and we love watching him play it. Few things bring him greater joy than scoring in the paint or knocking down a corner three. He’s an assist machine on the court, always finding the open shooter on the wing or threading a bounce pass to a big man beating the press and cutting to the rim. So, we do everything we can to give him every opportunity to play travel ball. Which is why we do asinine things like get up at 4:00am on a Saturday and drive 2.5 hours to a tournament, where he plays three or four games in a span of 6 hours, and then we drive back home, exhausted and blurry-eyed, only to do it all over again the next weekend. Why must 10-year-olds play out-of-town basketball tournaments that start at 8:00am on a Saturday? There should be a law against it; some kind of child-labor thing.
Ultimately, we hope our investment in Kaleab’s basketball skills will land him a college scholarship someday. What parent doesn’t hope for this when they see such athletic promise in a child … and when they have to wake up at 4:00am every Saturday and drive hundreds of miles? The sacrifice had better pay off!
On a hot and humid Saturday in early September 2021, we rose at the aforementioned 4:00am, shuffled through an expedited morning routine, loaded our Toyota Sienna van and began our 2.5-hour journey to Clearwater, FL, for a basketball tournament. No amount of caffeine and breakfast sandwiches could overcome my sleepiness as we drove south on I-75 in the darkness, my two kids, Lila (15) and Kaleab, sleeping peacefully in the back, and Maria (wife) dozing in the passenger seat. My eyes kept closing, so I’d repeatedly slap myself in the face to stay alert. At one point I threw my head into the window to knock me awake. Still, the road lines criss-crossed in my vision and played tricks on me in the sprawl of the headlights. More than anything, I wanted to crawl back into bed. This is for your son, I kept saying to myself. You’re doing this for him. You’re a good father. No, a great father! A father who sacrifices like this truly loves his son. Only 104 miles still to go. You can do it. Stay awake!
We pulled into the unassuming Clearwater YMCA parking lot just as the sun was beginning to peek over the horizon. The place was fairly quiet; the parking lot fairly empty. We were early. Good for us! There’s no greater feeling in the world than arriving at a morning event early(!), knowing you could have gotten 20-30 extra minutes of sleep.
My kids slowly pulled themselves from their deep and glorious slumber, moaning and cooing pleasantly as they came to. Maria perked up from her own delicious respite. “Oh, we’re here already?” she asked. “Time goes so fast when you’re asleep.” I stared straight ahead, seeing only colorful amoebas in my somnolent vision and trying to repress the sleep-deprivation headache that was forming.
I heard Kaleab yawn in the back. “I slept like a rock, Daddy!” Lila shifted under her blanket, stretched and mumbled beneath her grin, “Car sleep is the best sleep.”
I blinked twice to clear my vision. It didn’t work. I could barely hold my head up. “Now what?” I asked in pure monotone. “The place doesn’t look open yet.” The words slurred from my lips. I hadn’t been this tired since pulling an all-nighter in college.
“The kids and I will go see if we can find some other families,” Maria responded. “I’ll see if the doors are unlocked and maybe we can go inside and wait.” She turned to face my refreshed children. “Get your things, you two, and come with me.”
The children dutifully began gathering their things. I eased my seat back and said, “You guys go on ahead. I’m just going to get a bit more rest, then I’ll meet up with you.” My seat was tilted so far back that a dentist could have performed a root canal on me. In fact my head felt like someone was drilling a hole through the roof of my mouth. I closed my eyes and listened to Maria bark more instructions at the kids while they bumped around preparing for their departure from the van. Maria said to me, “We’ll text you when we figure things out, then you can come find us.”
“Sounds good,” I slurred behind my eyelids, and began to fade into the ether.
After some mild arguing between Maria and the kids—which happens during 96% of car departures—and some door slamming, I knew I was alone in the quiet solitude of my Sienna. Pure bliss. Just me.
In no time I was out. Completely. Mouth agape. Dreaming even. A sleep-induced leg or arm spasm once in a while. There are times your mind knows how comfortably you’re sleeping, so it creates a feedback loop via dreams of meadows, lazy rivers and easy breezes. That’s where I was … savoring every second … dead weight … until my phone started vibrating on my leg and I was jostled awake. It was the dreaded text from Maria. I was to join my family inside the gym. I laid there in my seat for a minute trying to think up excuses to stay put and re-enter dreamland. But then another text: You coming?
I raised my seat back to its upright position and rubbed my face with both hands. Time for basketball. I made a mental assessment of what I’d need to take with me. Wallet, phone and keys. Keys. Where did I put them? I checked my pockets and the center console. Not there. I looked around the cockpit. Ah, there they were, tucked into the little pocket cubby near the door handle. I merely had to reach my fingers into that pocket and extract my keys. Simple. A monkey could do it. Just grab ‘em and go.
I reached in, wrapped my fingers around the keys and pulled my hand up, only to have the keys drop right back down into the cubby. No big deal. I just hadn’t lined up right. I wasn’t loose. Took a bad angle. I tried again. Same result. The keys dropped right back down, this time mocking me as they did.
I took a deep breath and wiggled my fingers. You got this, Garrett. Don’t let CMT defeat you. It’s just a set of keys. You can do it. I moved in slowly, like I was trying to catch a grasshopper. Easy, easy. Concentrate. Use your hand and fingers like an excavator. I reached again, wrapped my fingers around the keys, got a firm grip and brought them up slowly. Yes, that’s it. But they dropped from my weak hand and nestled cozily back into the cubby.
Rage now, full and immediate. Anger consumed me like a fire! The CMT had defeated me again, but for the last time! No more of this! Reach in and grab the hell out of those keys, Garrett! You show them who’s boss! You’re bigger than them, dammit! As those thoughts bore through my mind I blasted rage through my nostrils like a charging bull. I knew of only one more trick to flood my body with the necessary adrenalin I’d need to strengthen my hand to pick up those keys. I inhaled the universe, opened my throat wide and screamed with the rage of a William-Wallace-led Scottish army: “C’MON FU*%ER! GRAB THEM!” I almost shattered glass with the volume. And with that, I yanked my keys from their cubby, squeezed the juice from their metal guts in my fist and sounded my most barbaric war cry. When it was over, I was breathing heavily.
Then I heard it. The sound of rustling paper behind me. Confused, I turned around. There, sitting quietly with her mask on, book in hand, staring at me like she had seen a ghost, was my beautiful and innocent daughter, Lila. Terror filled her eyes, which locked on mine. She couldn’t even blink. I think she had been reading a book on Biblical purity and guarding one’s tongue. Or maybe it was a book about Godly fathers.
I shamefully lowered my head. “Lila … I had no idea you were still in the car.” Her eyes never moved as she sat stock still, probably wondering who this angry monster was before her. Maybe they were beginning to water?
You see, in private, when CMT has stripped me of my ability to perform simple tasks, I’ve launched such expletive-filled tirades when nobody else was around. Never had one of my kids—or anyone else—heard me do it. Now with my cover blown, I had nowhere to hide. “Honey,” I said to my dismayed daughter, “sometimes Dad intentionally works himself up like that to, you know, drum up the strength to do something simple.” She sat there silent like a statue. “I thought you had left the car. Had I known you were back there, well, I would never have, you know, said what I said. Do you forgive me?”
Lila just nodded slowly. My wife does a pretty good job sheltering her, so I doubt she had ever heard such vile talk, and certainly never heard it expressed like I had expressed it.
“Good,” I said. “Thank you. I’m really sorry. Now let’s go inside.”
As we walked through the parking lot I put my arm around her gentle shoulder. I looked down at her and said, “Honey, mom doesn’t need to know about this little episode. This is just between us, okay?”
I think she was still too shocked to answer.
“Okay, sweetie?”
—If you enjoyed this story, explore more Only Me! stories on my blog by clicking the button below. Also enjoy The Exploits of Zeus Hall, a series of short stories.