Sit Down Before Reading: A Memoir by Dave Bexfield
Nearly 30 years ago, when Laura and I were traveling around the world on our honeymoon getting into all sorts of mischief, we heard the wildest of stories. In the Amazon rainforest, we listened, mouths agape, to tall tales about the candiru, a small eel-like fish that is attracted to urine. Supposedly the “penis fish” swims upstream into an unsuspecting swimmer’s urethra, and once inside uses the spines on its gill covers to lodge itself, making removal extremely painful, if even possible. In Kenya, in between riveting lessons on avoiding your standard hazards—namely getting trampled by water buffalo, gored by rhinos, mauled by lions, or eyeball gouged by vultures—we crossed paths with veteran storytellers, namely Peace Corps volunteers. One told us the tale of the most harrowing PC experience ever, one that had earned legendary status.
The story goes that one young, intrepid volunteer arrived in her new village to discover that her hut—smartly tucked away from the hubbub—had its own personal, freshly built latrine. Well, mostly fresh. Fresh wood platform, fresh wood seat, but same old, ahem, shit. Splinters were her biggest concern as she ventured to christen her new toilet… until they weren’t. Turns out the fresh wood had all-but-invisible dry rot. The moment she sat down, the weakened platform groaned before collapsing. Dazed, she found herself in blackness, neck deep in a slurry of urine and feces, the walls too slick for escape. And because she was on the edge of town out of earshot—with villagers wanting to respect her privacy—it took two agonizing days to rescue her.
At the time I couldn’t imagine what she was going through. But now? I had a pretty good idea because I was neck deep in my own health crisis with no clear means of escape. By September my UTIs had returned—the urologist appointment that I had made months earlier couldn’t come soon enough.
The Johnson Whisperer
My urologist walked in, sat down, then briefly looked at my chart with puzzlement in her voice.
“Men don’t really get UTIs,” she told me as I crossed my legs tighter. “You simply have a neurogenic bladder, and you are not draining fully. That’s common with MS. You should be self-catheterizing six times a day.” Then her male assistant came in and said it was time to select my catheter of preference and get to practicing. It was that fast.
My preference was no catheter, especially after I saw the length of said catheters. To my untrained eye, they looked to be five, six feet long, something that could lasso a horse or hogtie a pair of criminals. So, in an effort to cut the awkward tension of the moment, I opened my mouth to tell a raft of inappropriate male anatomy jokes that were flooding my brain. But before I could speak, my pants were off, my member was out, my hands and privates were sterilized, and the lesson began.
It went about as well as one would expect a cathing lesson to go with inexperienced, bumbly fingers. Apprehensively. Clumsily. A little spillage. At least I wasn’t the only one scarred, as Laura looked on with the curious intensity of the scientist that she is. And that was that. All fixed! My UTIs were in the rearview mirror. Because guys don’t get UTIs, which must be why my urine cultures often were negative.
To celebrate and recognize my newfound skill as a Johnson whisperer, I then proceeded to inform every close friend of mine—often in distressing detail and over dinner—about my talents… or lack thereof. I apparently have a shy urethral sphincter and, wait, hold on, Laura is shaking her head and giving me the “cut” sign, as though this is TMI for my readers. And she is confirming that, yes, yes it is.
Dressing Up, Literally
Using the bathroom was getting increasingly complicated. I struggled to get on and off the toilet. When the urge struck (HOURLY!), it was a challenge to remove shorts while seated and then impossible to pull them back on. With my arms getting increasingly weaker, I could no longer reliably lift myself for Laura to help. We desperately needed to find another solution, as Naked Dave was wearing out his welcome.
Prior to losing the use of his legs, Dave was gifted two The David aprons by friends who believed they were being incredibly clever. Clearly, nobody wants to see Naked Dave, even a semi-naked Dave disguised as a Michelangelo sculpture.
Kilt Dave was briefly pondered but sliding from wheelchair to toilet still meant the kilt was under my butt. And while I can do a deplorable Scottish accent with aplomb, a) I am not Scottish, instead taking cues from Groundskeeper Willy and b) Laura and friends tire swiftly of said accent, which would certainly be deployed whenever the kilt was donned, making such attire problematic. Using a bottle sounded like an obvious solution—yay for being a dude—but my shy you-know-what eliminated that possibility. (That’s also why I never pursued the career of truck driver or Amazon stocker.)
Now one would think Skirt Dave would have shared the same fate as Kilt Dave, but I found a dress specifically for wheelchair users: a “Disabled Elderly Needs Adaptive Wrap Skirt.” So hip, so metro. Basically, it was a polyester wrap with Velcro, so I could leave the skirt on the wheelchair when I transferred over to the commode. Freaking brilliant! I, however, would have preferred something slightly more fashion forward than black poly with a strip of Velcro that was slightly wider than a pencil so it didn’t have to line up PERFECTLY. But I can’t complain because the company sent me an extra dress for free. What’s not to like about free?
“Dave, why are you wearing a tablecloth?” was the question every friend asked when they saw my new wardrobe addition. Now I know why they unloaded an extra dress on me. Except for the Velcro, it was virtually impossible to tell the difference between my unfashionable dress and something you’d find on a plywood table at a cheesy banquet. And it was so slickery that it just slid off my wheelchair onto the floor whenever I tried to use the facilities. And then there was the exposure risk, as crossing my legs in my disabled state wasn’t practical and—and I’m being given the “cut” sign again by my wife.
Hair-On-Fire Alarm Bells
When you have a disability, you must make compromises and roll with the challenges, often literally. But Laura and I were running out of room to compromise. There was nothing more naked than naked. When I last soared up the Expanded Disability Status Scale, jumping a full 3.5 EDSS points in a span of five months in 2009, it set off hair-on-fire alarm bells. That journey usually takes someone with MS years to reach, as in decades. Now, today? If I gained even one more point, I’d be bedbound. The Widow Maker that is my aggressive disease wasn’t just threateningly snorting, she was barreling right at me. At us.
Mike Tyson once opined that everyone has a plan until they get punched in the mouth. (Yes, I used “Mike Tyson” and “opined” in the same sentence; you’re welcome.) We’d been punched so many times, we kept remaking plans and remaking them. But this, this haymaker from hell, was different. It was time to make yet another plan. That plan. That plan none of us ever want to think of, much less talk about.
We were both resigned to the uncomfortable truth that it was only a matter of time before I needed dedicated outside care. My resolve wasn’t fading, but my strength was, and it was getting to the point that Laura, as strong as she was, would need a break. Not just physically, but emotionally. A break from the unraveling. We started discussing phases. Start with bringing in a caregiver 2-3 times a week. Gradually increase that to daily. Then 24-7 assistance when needed, using our spare bedroom for our rotating caregivers. It was left unsaid what would be next if that wasn’t sufficient.
We couldn’t duck the next punch. Before we could start researching and interviewing care providers, the UTIs returned. With a wicked, unrelenting vengeance. My neurologist lobbed prescriptions at the unwelcome invader—cipro, cipro, then cipro again. I couldn’t go more than a couple weeks before refueling on antibiotics for relief.
Sudden Clarity
It's been said that people often experience sudden clarity at the end of life. I noticed it with my own grandparents when they were slipping away. For a blissful week or two they were briefly lucid, normal, themselves. A beautiful parting memory. Which brings us to late September. When my own thinking oddly started shifting, as though my brain and consciousness inexplicably were being transported into another plane entirely, getting sharper, clearer. Everything seemed so unfamiliarly bright, and then brighter still.
I was telling my terrified wife not to panic, that now I had a plan. Except I didn’t have a plan. At least not one that I was going to tell her about. Oh heck no. But that turned out to be almost unavoidable. After all, I had it on repeat.
“What’s that music you keep playing?”
“Just some song I found from a band member of Angels and Airwaves,” I told her. AVA, as the band is known to fans, pulled me through the hardest portions of my stem cell transplant. Later I was told by their agent that the entire band had enjoyed watching one of my videos about my stem cell transplant featuring their songs. I had to lean on their music once again. It helped to keep me at peace with the intractable situation we were facing. The obscure instrumental track, titled MD3 by David Kennedy, starts quietly, somberly, then unfolds into a spirited melody of hope and promise before closing with a pensive, slowing refrain.
I imagined it as our own personal video of our lives. It would start with me as a child growing up, then at 1:24 with me meeting Laura when I was 20 years old (she was just 17), moving on to our wedding four years later (1:49), cresting with images from our adventures around the world together and our deep friendships over the past 30 years (2:15). So many adventures! So many friendships! The music slows at 3:45 with contented images of us, slows more, and then stops. A final picture of me, smiling warmly, fades to black.
I wanted it played at my funeral.
I never had a chance to make that video. Now, I don’t intend to. Not ever. But to reach that epiphany, I had to confront the source of that oh-so-bright mental clarity. Its crisp embrace of my mind, the one that initially felt so gratifying, mesmerizing, harbored something deeply sinister.
In just days, the abject horror of being stuck at the bottom of a latrine for days would sound refreshingly preferable as Laura and I unknowingly were about to enter the most terrifying time of our lives. For cloaked in dazzling, distracting sequins—his hot breath singeing away any kindling of hope, his curled tail methodically sweeping away its last vestiges—lurked the devil.
