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Chapter 19: The Writing is on the Wall

Updated: Apr 1

Could I possibly be misremembering that tick bite? Perhaps a rogue mosquito or some other malevolent vector had been the source of my woes. After all, being a world traveler brings its own set of question marks.

While many of our exotic travels were a decade or more in the rearview mirror, who knows what zebra one could pick up wandering the Kenyan outback, fishing for piranha in the Amazon rainforest, or trying on snakes in rural India? Maybe whatever infection I have had laid dormant all these years? Then again, I did experience my first symptoms in Cambodia, where my wrist became incredibly painful. It wouldn’t be a stretch to conclude that our Indiana Jones-like crusades through the tunnels of Vietnam and the jungles of Cambodia right around that fateful time led to an unexplained disease. How was I so sure that a tick encounter had set me on this path of mysterious maladies?

My tests for Lyme disease have always been negative and I never recorded my tick/blackhead shower experience in my journal. I only recalled that it was late afternoon, a warmish day, Laura wasn’t yet home from work, and I was showering at an uncommon time. On most days of the week, I would have showered just before bed after an evening of exercising with Laura. And we returned from Lyme, Connecticut, on a Monday—meaning that on Tuesday I would have been jonesing to work up a sweat and get back into my workout routine, ergo a bedtime shower, no memories of afternoon sunlight. Plus, you would think I would have noticed a hard bump in the middle of my scalp, noticeable enough that I remember rapping on it with a fingernail, much sooner than the following weekend, which was typically the only time I would have showered in the middle of the day.

But wait. My journal. If we did something notable the day after returning from Connecticut, I certainly would have written it down. Maybe for some reason we didn’t exercise? I almost didn’t want to look.

Dave's journal articles from 2004

Journal entry, 9/21/04: Spend day playing catch-up. Dinner in Placitas at Anasazi Winery with Blue Plate Catering. Excellent food. And we devoured of all things, seafood! Lobster bisque, tuna tartare, rare salmon, ha!

No, I wasn’t misremembering that unusual afternoon shower on a weekday. And while it is supposed to take a minimum of 36 hours for a blacklegged tick to transmit Lyme disease—it had been just over 30 hours at that point on Tuesday afternoon—my unwise decision to pry it off with my fingernails left it partially embedded in my scalp, rendering the timing moot. The infection would continue unabated. It was now inevitable, inescapable.

The writing is on the wall, and it couldn't be any clearer. Yes, I am sure-sure that I have Lyme disease—despite being diagnosed 17 years ago with "clinically definite" multiple sclerosis. And yes, the gains after taking antibiotics are real. Really, really real.

Therapy Begins

My first therapy session with my occupational therapist Ivyrose was November 18, 2021. One area of focus (out of many): my deplorable handwriting. My first attempt was disastrous, but I made it appropriately entertaining… or utterly terrifying depending on your perspective: “All work and no play makes Jack a dull boy” written repeatedly. Yes, that’s from The Shining, when Jack, a writer, lost his mind. Maaaybe a bit too close to home.

All work and no play makes Jack a dull boy writing

By the following week I had decided to turn my daily writing exercises away from horror into journal entries. Very, very short entries.

Dave's early occupational therapy writing exercises

11/22/21 I wonder if I am holding the pen properly?

Might need to watch a video on YouTube.

Laura is amazing. I am trying different grips.

David W. Bexfield [signature] David W. Bexfield [signature]

My handwriting rather sucks balls. Slow here. My handwriting when fast.

Gradually, as the antibiotics worked their magic and my endurance improved, my scribbles looked less doctory, more writeresque. Less than three months later, I could do this. If you squint just so you might be able to see the improvement.

Dave's improved writing after being on antibiotics for Lyme

2/11/22 The results of yet another Lyme test came back predictably negative. Sigh. Still reaching out [to doctors] with no success. Madness! My PT is going well—I did 13 minutes just legs [on the NuStep], I'm getting on and off the floor easily, did gangbusters on the Rifton Tram [walking device] and standing wheelchair, even managed one-legged high kneeling (with assist). Feeling so good that I booked a two-night stay at 10,000 Waves in Santa Fe with an 80-minute massage for Laura! This is our first night away from home in two years—10K W requires masks, both vaccinations, and a booster, which lowers the risk (and stress).

Unbelievably, I wrote that. Clearly. Using a pen and paper. In the past two years my handwriting had devolved into signing my name illegibly as I gripped the pen as a toddler might—a clenched fist—or as someone would hold a switchblade preparing to do that trick where you stab the table between spread fingers at great risk of bodily harm. Strangling a writing utensil is not conducive to good penmanship, so if anything required more than an “X,” Laura was tasked with yet another extra caregiver duty.

Now? After practice and patience, drilled into me by Ivy, I could scribe a full page by hand, one that others could actually decipher. Once again, I could include personalized notes on my typewritten Christmas cards instead of signing them just “Dave,” which receivers could only make out by the “D.” But I was most excited to pen my 29th anniversary card to Laura, the contents of which are a bit too personal to share even for this oversharer.

And my legs! When I started exercising on my seated stepper, I couldn’t budge it using solely leg power. Two months later I could pedal using just legs for a total of 15 minutes, including stretches that extended for as long as 5 minutes uninterrupted. I might not be joining le Tour anytime soon—Jonas Vingegaard and fans of the Dane cyclist can relax—but my advances were unmistakable.

Dave using a Rifton Tram to help him stand and walk

My therapists soon introduced me to the Rifton Tram, a contraption that lifts the harnessed user up to standing so that exercises and walking, yes walking, can be accomplished safely with support. Despite having legs with muscles so atrophied that the only “legs” they resembled were those drawn on stick figures, in time I was doing a full lap circuit in my home.

The faucet of gains kept gushing. In the spasticity department I had weaned myself down from 60 mg of the muscle relaxer baclofen to 30 mg daily, a dramatic decrease. In the transfer department, I was able to stand and pivot once again (using bars) instead of merely sliding sideways off my wheelchair onto surfaces such as the toilet—absolutely critical if I am going to be able to dress myself again. I also hadn’t been able to get off the floor without help since I couldn’t remember when. Jenelle, my other amazing physical therapist, saw to it that I could do just that with my newfound arm and leg strength.

Dave on the Rifton Tram with his PT

Dave's Polar heart rate statistics after a workout

Other areas improved as well. For the past year I had struggled to get into the cardio zone while exercising, which had been a real puzzler. But Lyme disease can affect the heart in myriad ways. I now know that my random heart problems and my phantom “heart attack” ten years earlier weren’t flukes or me hurting myself while exercising, it was this damn disease. That also explains why I couldn’t get my heart rate above 130 beats per minute when it should easily crest 150 bpm during intense exercise for someone in their mid 50s. Now I could get into the 140s. Progress!

Perhaps most, uh, relieving, my gains in the bathroom continued to shock, as sleeping through the night without having to get up is now commonplace. (During the day, a toilet visit only every 4-6 hours is the norm.) Even my constipation improved. And then there’s the bedroom department! Oh. My. Goodness. Which, I’m being told by my editor and wife, is a department off limits to the masses, sorry. But-but-but, I protested to Laura, it’s so hard for me not to wrap up all these gains without a happy ending! Appeal denied. Oh well, I trust you can read through the not-so-blurred lines.

Like an awkward newborn foal, I was struggling to make sense of this new world after three months of steady gains. And struggling to keep expectations in check. I wanted to be up and using my walker already, eying my forearm crutches for the graduate program after that. But rewiring takes time, stressed my therapists. And it also takes the right treatment.

Doxycycline, a perfectly fine antibiotic for many forms of Lyme disease, does not cross the blood-brain barrier, essential if you are going to beat back neurological forms of the disease that target the central nervous system. And a healthy CNS is sorta critical if you want to do stuff, like say, walk.

So my doc and I made an angst-inducing call: stop the antibiotic.

Dave at the immersive Van Gogh exhibit with writing on the wall around him


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