Sit Down Before Reading, A Memoir by Dave Bexfield
If I was going to have a chance to avoid entering a nursing home in my early 40s, all I had to do was walk 100 meters. That’s all. For the metric challenged, that’s about the length of a football field excluding one end zone. Think front doors of a Costco to the roasted chickens in the back—a trek some 60 million people make every year. Easy peasy lemon squeezy.
I was so screwed.
See, I have medical issues. More precisely: an issue, and it’s a biggie. I was diagnosed with multiple sclerosis in 2005 in my mid-30s—it tends to be detected, in women especially, between ages 20 and 50—and it is one of the leading causes of disability in young people. Researchers are still unsure as to what causes it, how to best treat it, or why it affects those diagnosed so differently.
The disease gradually breaks down the insulation of nerves in the brain and spine, short circuiting critical connections, potentially even cutting them off entirely. As you can imagine, this can be a rather huge problem. To an outsider, the most apparent crippling side effects from MS are mobility based, with walking issues that necessitate a cane, wheelchair or scooter. But there are dozens of cloaked symptoms that can be far more debilitating, from unflagging fatigue, to cognition challenges, to vision issues. Numbness, tingling, pain, loss of coordination, and a cornucopia of problems beginning with the letter S—spasticity, strength, sensitivity, swallowing, speech—give you a sense of how assaulting this disease can be. It’s an equal opportunity front stabber, back stabber.
Usually MS plods along. Picture a senior citizen on the beach with a metal detector and a mission. It’s a slow process, as symptoms wax and wane like a comb over on a breezy day. Usually.
While many with MS won’t have walking issues for decades, if at all, a small percentage will draw the short straw in the MS lottery. Less than five years after my diagnosis, I was holding one of those straws. And it was dinky; my disease had turned blindingly aggressive.
For the first several years I had been giving myself daily injections—into my thighs, arms, stomach—in what had been a futile effort to slow my disease. Every morning before coffee, I took the syringe of medication out of the fridge to let it warm, dutifully washed my hands, disinfected the injection site, and sat down to collect my thoughts before pinching my left earlobe, mildly distracting myself for when the poke of pain came. More than 1,000 shots.
So I tried another injectable therapy (only three times a week, yay), shooting myself in the evenings so I could mostly sleep through the flu-like effects that tended to arrive a few hours later. Nope. My disability march incomprehensively accelerated. But thankfully there was another experimental option: a promising research study testing a powerful new drug, an infusion. I applied. We crossed fingers. We knocked on wood. We avoided the number 13. I shaved my head for luck. It wasn’t enough. There was an odd red flag in my bloodwork. Some particular “cluster of differentiation” counts of my B cells and T cells were a smidge off. A smidge. Researchers don’t like smidges. At all. I was excluded from participating.
A Cancer Treatment Reimagined
There were no other local MS studies that I qualified for, and the few available MS drugs left for me to try had glaring black-box warnings from the FDA. And then I remembered an e-mail I had saved from a friend with MS about a clinical trial. A bat-shit crazy clinical trial. Specifically: a bat-shit crazy clinical trial you would participate in only if you were desperate and had no other options and were willing to risk your life.
“Is this you? Not me…” Caitlyn wrote that May, forwarding along the details of a potentially groundbreaking MS treatment. “This attempt to ‘reboot’ the immune system is strictly investigational for MS,” researchers cautioned in their call for volunteers. “The procedure is not without risk, one of these being serious, potentially life-threatening infections due to the weakened state of the immune system before it is fully restored.”
It’s funny how in just a few months, my “Uh, no way” turned to “That sounds totally rational.”
By that time my decline had become so furious and alarming that I had even asked to be admitted to the hospital. A request that was deemed unnecessary. (“Sometimes MS is just like that.”) In nine months and after a flurry of puzzling urinary tract infections, all viable FDA-approved therapies had failed. I went from walking unaided to using a walker, and I was out of options including all clinical trials save this one now staring back at me in my inbox—an autologous bone marrow transplant, a novel technique used primarily to treat cancers of the blood, for poor prognosis MS sponsored by the National Institutes of Health. Hope.
Hope then apparently decided to take an untimely vacation to the Seychelles. The NIH’s funding for the trial was cut. My health insurer refused to step in, offering instead to approve a wheelchair. If I could somehow marshal the funds, at least I easily met the inclusion criteria for the trial because my disease was so aggressive. All I had to do was walk 100 meters. After all, I had strolled a third of a mile unaided just two months earlier when I easily prequalified for the clinical trial.
But that was also two long months before cratering health. I now relied on a walker for ambulation and walking 100 meters—without even a cane—was going to be a stretch barring a significant change in my health. At my urging, my urologist at the time agreed to try an extended course of a different antibiotic in a pin-the-tail-on-the-donkey effort to tamp down my bladder infections. Meanwhile, my neurologist opted to try one of the black-boxed drugs at least long enough for me to regain leg strength. Something, anything, for a brief reprieve.
Nope. Instead, I went in reverse. Within two weeks my body revolted, and I was met with a swift relapse; I couldn’t take 10 steps without falling. Then the other shoe dropped. Two dropped shoes meant I was in deep shit. The trial was permanently closing in three weeks, and the study coordinator spelled out exactly what I feared in a short email: “Should your symptoms not improve … sadly we will need to exclude you from further consideration for the transplant.”
Staring at screen, rereading and then rereading, I quietly strangled the armrests on my chair.
A Hail Mary Chance
Three weeks to relearn how to walk. Without any assistance. And no resting whatsoever. Cue Lloyd Christmas: So you’re tellin’ me there’s a chance. Ever the optimist, I hatched a Hail Mary plan: continue with the extended course of antibiotics I was taking, do yet another round of steroids to shorten the relapse, and enlist my sister Karen, a physical therapist, to train with me relentlessly over the coming month. It had to work. It absolutely had to.
Every day my younger sister showed up at the door armed with a new, tortuous rehab plan to heal her brother, clearly revenge for when I repeatedly tricked her into doing the dishes when we were children. (“Oh, if only Mr. Mysterio could save the day and wash these pots and pans,” I would lament. Donning a black ski mask, Kare, er, Mr. Mysterio, would then show up to save said day. This worked for a solid year before she got wise. So, I suppose rehab torture was deserved. Fun fact: the mask was rediscovered decades later when we were cleaning the home of our parents.)
My walking progress was breathtaking, almost incomprehensible, even to my neurologist, who had just warned the study’s doctors that it was unlikely I would be well enough to participate given my recent setbacks. After week one I graduated to forearm crutches. After week two, a cane. Then, unbelievably, days before the study was to close, I found myself in my neuro’s office preparing to do the impossible. He watched on as I clumsily lumbered Frankenstein-like after Laura, who was using my rollator as the teasing rabbit in a greyhound race. At exactly the 100-meter mark I collapsed onto the walker’s seat, exhausted yet elated. I officially qualified.
Laura and I rushed to make arrangements for the scariest adventure of our lives—the consent form I signed warned of a risk of death from the experimental treatment as high as 1 in 20. Out of options sans a slate of gushy brochures for assisted living facilities, that sounded positively peachy. We were just beyond fortunate it was even a possibility. For most patients, even for those who qualify, it’s not. The treatment is ghastly expensive—$200,000 not including travel, lodging and food—and, at the time, health insurers were loath to spend so much on what they insisted was an unproven therapy despite over a decade of supportive research. After my health insurer turned away my every attempt to get the denial overturned, we were lucky to be able to raid savings and borrow money from my parents to afford the life-saving treatment.
Laura and I had spent virtually our entire married lives in Albuquerque, and now we were packing the essentials of that life—which currently included a wheelchair, walker, shower chair, and boxes of Depends—into a small SUV for the three-month sojourn to Houston and MD Anderson Cancer Center. We leaned on generous neighbors to care for our house, automated every bill we could, arranged to forward the mail, and then locked the front door for the 15-hour drive.
We couldn’t possibly have known then that the grueling ordeal we were about to embark on was wholly, entirely unnecessary. But the personal 4-year donnybrook with my health insurer that came afterward? The one that ended up featured in The New York Times? That sharpened my resolve in ways I couldn’t have predicted—and prepared me to write this, the most important mission of my life.
Chapter 2: 100 Meters
Chapter 21: An Improbable Proposal (coming 10/5)