Sit Down Before Reading: A Memoir by Dave Bexfield
In third grade I won the lottery. Well, sort of. It wasn’t for cash or anything (thank goodness) as my spoils undoubtedly would have been spent on Slinkies, Green Machines, and a lifetime supply of Pixy Stix (flavor cherry). Our school held a drawing for a select number of students to legally skip a full day of class and instead watch our secret Santa gifts get loaded onto a ship to help less-fortunate kids living overseas.
You can imagine the celebration when my name was called. A snow day when it wasn’t snowing, just for me and a few classmates? I swear I heard trumpets, saw doves, witnessed clouds parting to expose the heavens. Breathless doesn’t begin to describe my excitement as the luckiest kid in the world. For weeks it was all I could talk about, and I rubbed my good fortune in my sister’s face daily as only a brother can. She was a year behind me in school and lightyears behind me in good fortune as of that month.
Oh, fate. I woke up on the morning of my special, special day with a 103-degree temperature. Even though an egg could be fried on my forehead, I was not about to be sick and miss school on the day I was able to skip school. Absolutely not. My mom, though, had other ideas for her stubborn third grader. I was staying home, case closed. Tearful pleading wasn’t going to sway the judge.
This morning felt like I had won the lottery again. Only this time the stakes were a wee higher. By insisting on curling a 20 lb. dumbbell—only five pounds lighter than what I regularly lifted in my pre-disease life 17 years ago—was I setting myself up for an epic faceplant? And Jesus, that cast-iron weight looks waaay bigger than the rubbery lavender versions I usually lift. Yet I had kept telling Laura heavier, heavier. Gulp.
My wife’s foot started tapping. Other than never waking her up in the middle of the night, there is another blanket household husband rule: never delay her food. After rolling out of bed, I inexplicably had insisted on demonstrating my supposed improved strength before breakfast, specifically before my wife’s breakfast. I grabbed the dumbbell as if my life depended on it—‘cause it probably did—gritted my teeth, held my breath, and….
“Oh jeezus, remember to use proper form and breathe normally,” scolded Laura.
One, two, three, four, five, six, seven, eight, nine, ten, we counted to ourselves before my stronger left arm passed the 20 lb. weight to my right. One, two, three, four, five, six, seven, seven-and-a-half, eightish, niiine?, okay, we can call that ten.
I hadn’t lifted that much weight in years. No, not years, nearly TWO DECADES. Our saucered eyes locked.
“Do you know what this means!?” I was so excited I could barely spit out a coherent sentence.
“Yes.” Laura was very matter of fact, another thing I love about her. “It’s time for breakfast.”
Newfound Superpowers
As the next week spooled out, I began to understand what Peter Parker felt like after he got chomped by that radioactive spider. Only instead of climbing buildings and lifting cars, I was rolling around the house in my wheelchair behind Laura asking her if she needed any jars opened. Jar of pickles—BAM! Jar of salsa—BAM! Jar of capers with a “best by” date of 2018—BAM! I was unstoppable, especially if I knocked the lid on the countertop beforehand, because duh.
I demonstrated my superhuman strength at every opportunity, even when it was entirely uncalled for.
“Why are you hovering over your wheelchair?” said my perplexed spouse. “Is something wrong? Did you hurt your butt? I know you, you hurt yourself. You somehow injured your ass. Sitting on it. Only you.”
“No, no, I’m just working out my tris,” I said, using the hip bodybuilder gym slang for triceps, as I continued hovering. Then did some wheelchair dips. Up, down, up, down. Since why the hell not? Another time I was transferring from my shower chair to my wheelchair, and I just stood there. Because, unbelievably, I could, using my atrophied sticks masquerading as legs for support. (Laura initially thought my right leg had accidentally locked out and I was stuck.)
Later I noticed something truly bizarre: my legs had become a floppy, noodley mess. My first negative side effect? Nope. The sixty milligrams of baclofen I was taking daily, scarcely enough to keep my spasticity at bay pre doxycycline, was now rendering me a flaccid disaster. I began to slowly taper down the muscle relaxer, emphasis on slowly, as cutting it off sharply could cause seizures, hallucinations, high fever, and other ick. There were also other changes that Laura noticed before I did, like my suddenly warm legs. For years they had been icicles, even after a hot shower. No longer. But the true watershed improvement was in the bathroom department. I was no longer “shedding” any “water.” Okay, I wasn’t peeing myself.
Since 2009, my bladder had been a near constant nemesis. I began investing in Depends in 2011 after the gains post stem cell transplant started wearing off. Ever since the disposable, protective underwear had been elevated to MasterCard status, as in I never left home without them, technically two pair: the one I was wearing and a backup for inevitable accidents. And I’ve peed in some of the world’s most iconic, and un-iconic, locations. Unintentionally. Along the banks of the Seine. On a small grassy median in a mall parking lot with a shocking lack of trees. In a cemetery, carefully avoiding all tombstones. Outside a Russian Orthodox church in St. Petersburg, mid service. Inside a Peruvian sightseeing motorboat. If you can dream it, I’ve leaked in it. But now?
Practically normal. The relentless spate of UTIs, gone. Urgency, gone. Leakage, gone. Retention, gone. Frequency, gone. Any need whatsoever to self-catheterize, gone. Just gone. Like the wind, a Juan Soto homer, Ben Affleck’s wife in that 2014 movie about a girl. Gone. Where could I possibly celebrate such a milestone? As I had told virtually no one about my Lyme disease, it didn’t seem wise to pop on social media and tweet to both my followers and the world about my new behaving bladder. But I had to tell our closest friends about my misdiagnosis. And my bladder. So I came up with the cleverest of solutions.
Holy Sheet
I’ve done a family Christmas letter since I married Laura in 1993. Yes, ew, one of those. Except not. I write them mainly for us, a record to look back at our lives. Because these cards are an honest recap stripped (mostly) of the ubiquitous braggadocio, they can get a bit personal. But other than our parents and a few friends, people aren’t that engrossed in the annual goings-on of the Bexfields. So, I make it interesting, creative, and entertaining—every year there is a different theme to highlight the events of the past 12 months. They often include fun bonuses, like that prize in a box of Cracker Jacks (OMG, I got a miniature comic book!!!). Our holiday letters have now become legendary; indeed, many recipients collect them. A perfect venue for my revelation. Friends would appreciate the news, and detail, I figured. Laura was not so sure.
“Please do not surprise our friends about your newfound urinary prowess,” Laura intoned. “Please.”
D’oh! I had already figured out both the headline and the appropriate freebie: The Bexfield Year of 2021 Can Best Be Summed Up in Two Words: HOLY SHEET (with a single sheet of toilet paper taped to the cover). But fine. I’d call them all first.
I probably should have prepared a script. Leading off a conversation with, “I need to talk to you about an important recent change in my health” led more than one friend to assume the worst. THE WORST. A high school friend practically burst into tears. “I thought you were dying!” She was not assuaged by my assurances that I would never drop impending death news on her before Christmas. Obviously, I’d wait until after the holidays, you know, around when quarterly taxes were due or something.
In my conversations, I also discovered that a few of my friends had been praying for me with diligence, especially in light of all of my struggles over the past year. One has even had me on her daily prayer rolls ever since I got blessed with an MS diagnosis back in 2005. Now, I’m not terribly religious, but given that I no longer had MS, this news would give anyone pause. She was, ahem, excited about my revelatory news and I wasn’t about to stop her from doing a victory dance à la Church Lady. “Well, isn't that special?!” Why yes, yes, it is.
Questions about my new diagnosis were shot back at me with such frequency that if my interrogators had had a buzzer they would’ve run the board in Jeopardy!. Could you have MS and Lyme? Technically yes. Do you think you could have both diseases? No. Are you sure sure? Yes. Then they always landed on the same Daily Double: But have you gotten an official diagnosis? Not yet. Final Jeopardy was equally predictable. So how did you figure it out, what’s the treatment, do you have a prognosis, will you be able to walk again, and are you going to sue the bejesus out of everyone? Me (after taking a deep breath): it’s so crazy and complicated I probably should just write a book.
One common frustration that unexpectedly surfaced in every call was how to best convey the appropriate Hallmark sentiment. “Congratulations! … On being misdiagnosed for 17 years, finally figuring it out after getting so disabled that you needed a wheelchair, but in the future maybe you won’t.” It doesn’t really roll off the old tongue. The simultaneous, polar-opposite emotions my news triggered flummoxed friends and family alike. What to call it?
To most, that feeling—the one whirring through minds after news of the misdiagnosis shockwave subsides—is totally foreign. Like the German word Schadenfreude, there isn’t a word in the English language that properly conveys what the brain is trying to express. A sense of unbridled joy (yay, you don’t have MS!) hopelessly intertwined with abject horror (OMG, you never had MS?!). It needed a word. So, I created one: joyrified.
The 6 Stages of Feeling Joyrified
As I whittled down my personal phone tree, getting a sore arm from patting myself on the back for my future contribution to the Urban Dictionary, I started looking forward to at least getting a more conclusive answer to my most common Jeopardy! query: an official diagnosis.
Predictably, my latest Lyme disease panel came back, its shadow unmistakable. Of course. It was Groundhog Day, again, for the fourth consecutive time.
Negative.
