I never claimed to take the easier, shorter, or most traveled road. As a matter of fact, I usually take the path where everyone warns me, “You can’t get there from here!”
Pursuing uncharted paths can be rewarding, but it can also whack you in the knees, throw you down and steal your breath away. I don’t know about you, but when I do manage to scramble to my feet again, I’m more determined than ever, and I’m not just talking about bouncing back from the uncertainties of living with Multiple Sclerosis.
In 2001, I rode in what is called “The World’s Toughest Motorcycle Competition.” The bike
was a Russian Ural with tubed tires, drum brakes, and no electronic ignition. Even the bike’s manufacturer warned me that I had no chance of finishing an 11-day, 11,000-mile event riding their motorcycle.
Because of my reputation as a prankster, many felt I’d foolishly squandered a coveted entry spot in the race. However, all kidding ended when, 250 miles into the ride, I blew the first of three engines. If I had quit then—a thought I briefly entertained—the next 10 years of my life would’ve turned out differently. But I got up and pressed on.
Eight hours and three or four more breakdowns later, the steering ble
w, and deposited me face down on an Arkansas interstate, where I slid about 50 feet on my belly. I was ready to quit after that. But with the help of a kind state trooper, who called his wife to bring me some oil to replace what had spilled during the fall, I rose from the ashes, so to speak, and forged ahead.
By then I had made it three quarters of the way around the country on the world’s biggest piece of junk, with no intention of doing anything more than dragging it across the finish line. But suddenly a broken engine pushrod stood between me and my goal. Over the phone, a Russian mechanic empowered me: “Just find metal and make pushrod,” he suggested. So I limped into a Rawlings, WY, hardware store, and cobbled together enough items to fabricate the needed engine parts. Once more, I got up, powered forward and finally finished the rally.
Later, when I could laugh about it all—sort of—I put together a slide show presentation: “Having MS is Like Riding a Russian Ural in The Iron Butt Rally.” It recounts the painfully humorous and uncanny similarities between entering an endurance competition on an antiquated Russian motorcycle, and every day life with MS. Finding and harnessing my inner strength helps me persevere through seemingly overwhelming challenges and carve out my own destiny.
The past few months have been kicking the hell out of me worse than that Russian Ural, including a recent 100-day headache.
It came on last fall, and was the kind you get when someone switches your coffee to decaf and doesn’t bother to mention it—multiplied by 10. The pain continued the next day, the day after that, and on and on without ceasing. For the first time in my life, I left work early for several days, and even used up some sick time.
We wondered if it might be a new MS attack, although an MRI scan showed no new lesions on my brain. However, there were signs of significant stenosis on my spinal cord. Around Christmas, I got a steroid epidural, but the headaches would not go away. As a precaution, I was prescribed Acthar Gel, an alternative to steroid infusions for MS relapses.
I recently started physical therapy, and between the gel and cervical traction, I’ve finally gained some relief. It was not until February—three-and-a-half months later—that I had my first full day without a pounding headache. Apparently all the years of riding with a helmet, coupled with bad posture, put too much pressure on my vertebrae. Now I focus on sitting up straight, and stretch daily to keep the headaches and any future surgeries at bay. It took me a while, but finally I was able to get up and at ’em once again.
Just as I was celebrating my first headache-free week in 100 days, life kicked me in the kidney: I first experienced a sharp pain in my abdomen and lower back on the right side as I stepped out of the shower one day.
Within minutes I was doubled over in pain. As one who usually just reaches for a needle and thread to patch myself back together, my wife was quite concerned when I told her that I needed to go to the hospital. I knew it had to be my appendix, a kidney stone or—given the severity of the pain—the impending birth of a child.
It turned out that an “asteroid” had decided to pass from my kidney, getting stuck on the way to my ladder. Writing this column, I was in excruciating pain, and had been for days. If the stone didn’t pass y a certain time, I was told: “We’re going to jam a laser up there and blast it to smithereens.” fortunately, the bugger eventually passed before they had to go in there after it.
Sure, I’ve been slowed down by some rough patches, but I’m still determined to raise both awareness and funds for MS by setting more motorcycle endurance records. People laughed at me when I said I was going to ride 1,000 miles on 100 different motorcycles in less than 24 hours. And yet with the help of a dealership and some friends, I not only pulled it off, but also raised $4,000 while setting a new world record.
Since then, I’ve been talking about a much more serious and difficult feat: breaking the current endurance record of 31,000 miles in 31 days. For my best shot at success, I know that I need to secure sponsorships from a motorcycle manufacturer and a pharmaceutical company. I chose April Fools’ Day 2013 for obvious reasons, and figured 10 months would give me plenty of time to prepare. I believed I could convince a motorcycle manufacturer of my ability to ride, and of the great publicity such an event could generate for them.
Unfortunately, I have not yet found a manufacturer who is willing to lend me a couple of bikes to set a world record for MS. I suppose they may be worried the bikes may not make it, or that the feat sounds too dangerous. (Although some of these guys sponsor every type of road race, motocross and around-the-world adventure in other countries.)
I continue to ride to many MS events, sharing with patients my story and the lessons I’ve learned about living with this condition. So far, however, I have not been successful in booking a formal talk or presentation.
Though my spring world record bid had to be postponed, when the time does come, plenty of friends have promised to help, and some companies that make tires, gear and accessories have stepped up to be sponsors. Use of the bikes, servicing them, gassing them up, and the personal loss of income during the trip would cost me around $30,000, and I just cannot take that financial hit on my own.
Without corporate sponsorship or speaking opportunities, I have to get more creative. But I will find a way to break the record riding at least 32,000 miles in 32 days.
Putting the pieces in place may take longer, but will make the resulting story all the more interesting.
September sounds like a better month for breaking a world record, anyway!
by Paul Pelland
Articles in the Amy Brenneman Issue; Geri Jewell — Spring Into Action; Ashley Fiolek — Making the Move; Humor — A Tail of Two Kitties: CSUN — This is Your Future: Long Haul Paul — Riding the MS Trail: Tony Spineto — You Say Club Foot, I Say Marathon: DRLC — Federal Wellness Programs: Kendall Hollinger — Allergies on Ice: Charles Limb, MD — Jazzology & Your Brain: China — A Family’s Story of Strength: Scotty Enyart — PhD the Hard Way: Amy Brenneman — Chiming In: HE Fahed Bin Al Shaikh — Autism in the UAE: Caroline McGraw — Finding the Gifts in Everyonet; ABILITY’s Crossword Puzzle; Events and Conferences…