Zebra Found! (Sit down before reading, sorry.) That’s the exact subject line of the email I sent. The one that would ultimately save my life. To be clear, I am not an exotic pet detective, an errant-minded zookeeper with a penchant for leaving gates open, or a dad on the desperate hunt (again!) for Zeebie, his two-year-old’s stuffed zebra that NEVER leaves her side, at least not after
that one time when all holy hell broke loose.
For this purpose, Wikipedia defines a zebra as “slang for arriving at a surprising, often exotic, medical diagnosis when a more commonplace explanation is more likely.” Basically, if you are not on an African savannah, those hoofbeats you hear are almost certainly from a horse, not a black-and-white striped equine.
That’s how I got diagnosed with multiple sclerosis 17 year ago. That’s how most people get diagnosed with MS. The diagnosis fits when no other diagnosis fits. There is no definitive test for the progressive neurological disease, so the process is one of elimination. When the usual suspects are culled—your donkeys, so to speak—doctors land on the demyelinating disease. Ergo, the horse. It’s an inexact science. If neurologists were to put on their safari hat for every case to hunt for the unlikely zebra, it would take three Jumanjis: the original Jumanji, Jumanji: Welcome to the Jungle, and Jumanji: The Next Level. We can all admit that’s a lot of Kevin Hart.
That brings me to today and the reason I asked my doctors to strap on a pith helmet. After 15 suspected urinary tract infections in 15 months, with every possible horse nixed, it was time to start searching for the zebra that was causing this raft of unexplained UTIs. And the situation was getting dire. A wheelchair user for the better part of a decade due to uncommonly aggressive MS, I was familiar with the scourge of plodding disability, but this was different. I felt like I was in a slow-motion train wreck… plunging off a cliff into an active volcano filled with lava-resistant piranha.
Laura and I were desperate for answers. But when my urologist sat us down to discuss her zoological findings—oh, I wondered, was it a Grévy’s zebra native to Kenya and Ethiopia, a Burchell’s Zebra found south of Ethiopia through East Africa, a Mountain zebra common to Angola, Namibia and South Africa?!—we were crestfallen. None of her prospective diagnoses remotely matched my symptoms. None. We were on our own, without a guide. Which is the way it felt when I got diagnosed.
Back in 2005 when the scythe of a multiple sclerosis diagnosis threatened to dismember my future, I scrambled for support online. And couldn’t find it. Friends Doom and Gloom seeped into every blog, foretelling of a miserable existence. After losing ten pounds in those first foggy weeks clawing for hope, I realized I had all the tools to provide just that: I was a professional writer, an avid adventurer, a humorist, a fitness buff, and an unapologetic optimist. Yes, my life might get hard, but I will have a life. And I’ll show other optimistic misfits with this disease how they can flourish as well, no matter what gets thrown at them.
The Dawning, and Sunset, of ActiveMSers
The week of my “clinically definite” diagnosis (the arrival of that train had been anticipated for months), I launched ActiveMSers.org, a not-for-profit website to motivate and inspire others with the disease to stay as active as possible—physically, intellectually, socially—regardless of disability. It resonated. Today it is among the largest and longest running personal MS websites in the world with thousands of followers from every corner of the globe. I’ve been featured on the cover of magazines and inside the pages of the country’s most respected publications, from The New York Times and The Wall Street Journal to myriad health and MS-focused magazines. I am now one of the leading health advocates people turn to for staying active with a disability. Just one, wee problem....
Despite desperate attempts to slow my aggressive MS—seven disease modifying therapies, five clinical trials, and an autologous stem cell transplant—all treatments to date have failed me. I am profoundly disabled, rely on a wheelchair, and need help with most daily tasks. Between the drugs, the therapy, the research, and the medical equipment—including a handicap-accessible van, a custom standing wheelchair, and countless disability aids—over $2 million has been spent on my multiple sclerosis care to counter the ruthless progression.
Our last hope was to find that zebra.
But nothing could counter my recent and relentless UTIs. They returned. Over, and over, and over. The last year has been the most challenging of my life. And my wife Laura’s life. Unquestionably. And on so many levels. Physically, mentally, socially. We’ve been buried by question marks, not just about my health, but about my future—our future. My body, what was left of it, started fading. Everything about my health was going wrong, all wrong. Forget everything nonessential. We needed to settle my affairs while I was still physically able. Settle them before the frayed elevator cable snapped.
Our last hope was to find that zebra. Ironically, the logo for ActiveMSers prominently features a pair of binoculars. It was about time I used them. It was now up to me, and only me, to find that zebra.
Miraculously, against punishing odds, I did. It took an unbelievable sequence of events—one that plunged me into the most hellish depths of disability, one that had to unfold perfectly—for me to make my discovery.
There’s a reason why I’m urgently telling this story, and why I asked my doctors to sit down before reading that email. I'd recommend you sit down as well before taking in another word. Because I’ve come to the sickening realization that what has been happening to me isn’t just happening to me. If you’ve been diagnosed with multiple sclerosis or another puzzling disease, it could unknowingly, stealthily, horrifyingly, be happening to you, too.
When hunting for that zebra, I didn’t just unearth the root cause of my UTIs. Missed by dozens of doctors, specialists, and researchers, I discovered the origin of all my disabling symptoms for the past 17 years. And they weren’t triggered by multiple sclerosis.
Because I don’t have MS.
Preface | Chapter 2: 100 meters (coming 5/18)