A diagnosis of primary progressive multiple sclerosis can put travel aspirations into a tailspin. But when you are a senior editor of a leading travel magazine, making a mean batch of lemonade from lemons is called for. As you’ll read, Kendra L. Williams isn’t going to let this disease keep her off the road.
I should’ve realized something was wrong the second time I fell off of the bike.
And maybe I would have, if I hadn't been so embarrassed. In the relatively small universe of travel journalism, I was a VIP, and this fall 2012 trip along Missouri’s 240-mile Katy Trail State Park was no exception. As the senior travel editor for Midwest Living, I had the power to steer our 4.1 million readers—and their travel dollars—to the best destinations in our 12-state region. Red carpets rolled when I came to town. On this particular jaunt, Missouri parks staffers followed me along the pretty bike trail in a minivan, hopping out every couple of miles to show me Lewis and Clark markers, Native American pictographs scratched onto a limestone bluff and a 300-year-old burr oak tree rooted within sight of the Missouri River. A slow-moving chase car with eyes on me? Yep. Pressure? A bit.
I’d known for more than a year that something was wrong with my legs. I’d go to the gym every morning, and after 30 minutes on the elliptical machine, I couldn’t walk. I’d hang onto the railings and pretend to stretch or meditate until I could move. They’d been tingly and numb for about 9 years, but this was new. My doctor said it was a circulation problem and sent me for varicose vein surgery. No improvement—and five days after the second surgery, my legs started kicking uncontrollably. It felt like an electrical pulse would run down my leg, then it would kick—every minute or so. Nights became torture. I called my doctor in tears; he diagnosed me over the phone with restless legs syndrome and put me on a medicine for Parkinson’s patients. A neuromuscular nerve-conducting test showed nothing amiss. Doc ran out of ideas, and I was too busy to worry about it.
Except that wasn’t true. It gnawed at me at 2 a.m., night after night, and for the first time in my life, I became irritable and snappish. Doc correctly diagnosed depression, prescribed some happy pills and sent me to a therapist.
All of that happened before the Katy Trail, a gorgeous rails-to-trails state park that stretches from St. Louis to just north of Kansas City. I managed to ride the bike without incident (though padded bike shorts would’ve helped another problem tremendously). But when it came time to stop, I put my left foot on the ground and tried to throw my right leg over the back tire. But I couldn’t lift it enough. I slowly fell backward, landing on my backpack, staring up at the crystalline blue sky, the bike splayed across my legs.
So the next time, I was ready to outsmart the wide-seat touring bike I’d rented in the pretty, no-stoplight town of Rocheport. I would dismount the bike like a lady, tucking my right leg over the crossbar in front. Ha. This time, I fell forward, landing on the bike. The parks staffers watched, horrified. I couldn’t even begin to untangle this mess, and by the time we stopped for lunch, the bruises on my legs resembled a topographical map of Missouri.
Then came a fall two weeks later down the steps at Lambeau Field. Another one down the stairs at work. Another one during a hilly hike near Jasper, Arkansas. Another one down the steps at my son’s school. Another one up the stairs at Kalahari Resort in Sandusky, Ohio. Twelve falls in 12 months. By now, I’d also lost the feeling in my right pinky finger, along the back of my right arm, and across my stomach and back. And I’d come home from work and sleep from 6 p.m. to 6 a.m.
My doctor didn’t seem alarmed. He said the more I fell, the more I was psyched out about falling and had changed my gait. It sounded fairly reasonable to me. He sent me to an orthopedic surgeon to repair the hole I blew in my left kneecap after the Lambeau fall; that doctor didn't seem fazed about the falling, either.
The indiscriminate peeing started a week after knee surgery in August 2013.
I was back on the treadmill, walking to strengthen my knee. I finished my hour and turned the machine off—and peed all over it. No warning. And it happened the next day. And the next. And the next. What began as shame quickly morphed into fear. Something was seriously wrong with me. My therapist just about demanded I switch doctors and sent me to a woman doc roughly my age—40—who listened to my story and said, “There is something seriously wrong with you.”
I was never so happy to hear those words, even though she followed it up with “possibly M.S.” Finally, someone was taking me seriously.
Still, overactive bladder medicine didn’t begin to touch my new problem, which quickly jumped to six accidents a day. After peeing on the floor in front of a colleague at work, I decided home would be a better place to write and edit until I could figure out what the hell was going on. I tried to keep up the busy career mom pace—and failed. What used to be an easy walk around Des Moines’ winter farmers market became impossible without potty breaks and bouts of rest. I came home that November day, curled up in my darkened bedroom—and thought about the full bottle of sleeping pills in my bedside table. Would I really die if I swallowed them all? Or just screw up a body that was already failing me? Wouldn’t my husband and 7-year-old son be better off with a woman who could do all of the things that I used to be able to do? I heard the Peter Gabriel song “The Book of Love” in a movie and decided I wanted that played at my memorial service.
That was the low point. It was fleeting, but still. In addition to matters of faith, I’ve always been practical—my guys wouldn’t get my life insurance money if I died that way. Nowhere to go but forward.
The holidays landed me at the University of Iowa Hospitals and Clinics in a neurology department that felt a lot like a poorly run DMV. Mercifully, a neurosurgeon at Iowa agreed to refer me to the Mayo Clinic, which officially put a name to the madness: primary progressive MS. Lesions have chewed away at the myelin on base of my neck, affecting everything from there on down. I won’t even get into the bowel and sexual dysfunction. You get the idea.
Here’s the deal, though. For years, my travel schedule was kicked into overdrive from springtime to fall, as I spent 10-12 nights a month on the road. Except my symptoms forced me to step down from Midwest Living full time. Now, I travel a lot less (and a lot slower, with a walker and scooter) for my new blog, mstravels.org. A few months ago I enjoyed a long weekend in Chicago, where I sat in the presence of the Queen of Soul at the Chicago Theatre. Calling the handicapped accessible ticket line for the concert was like a nervous nerdy girl asking the star football player to prom.
“Um. Yes. Hi. I need tickets to Aretha Franklin?”
“OK! How can I help you with your disability?” the ticket agent said, launching into a series of thoughtful questions about what kind of assistive device I had and how many people were coming with me. Our banter loosened me up. Am I crazy, or he did sound a little flirty? No matter. I was back in business.
Destinations this summer include Kansas City, Missouri; Louisville, Kentucky; Cincinnati, Ohio; Washington, D.C.; the panhandle of West Virginia; Minneapolis; and Duluth, Minnesota. Join me at mstravels.org for true tales from the road, told with a travel editor’s expertise, a disabled person’s perspective and my own wry sense of humor. Primary progressive MS blew my old life to pieces. But from my new home office, with trees budding outside my window and my black Lab, Daisy, at my feet, my new life feels more familiar than I could’ve hoped for the day I kept falling off of the bike.