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By Jim Weatherhead
I love to ride motorcycles. Feeling my body in motion on any type of two-wheeled contraption is a deep-seated passion that started with the first tiny bicycle I got as a 5-year-old child. Riding is my alchemy of body and mind sensations that feed and nurture my spirit as I roll, lean, and sail through the world on two wheels. When I’m traveling on a motorcycle, it’s a place of calm retreat, intense awareness, and soul-healing energy that combine into a life-giving experience far greater than the sum of its parts.
When I was diagnosed with ankylosing spondylitis (AS) at age 26 in 1984, I was devastated. I had been searching for answers to my hip and back pain for half my life. Now identified, I knew this beast all too well – I was raised by a single mother who lived and worked labor jobs with severe and untreated AS that she always called a teenage farm injury. Her spine was fused by the time she was 40; she became fully disabled at age 58, and the doctors that processed her paperwork could not believe she was still working due to her advanced case and brutally crippled body. Mom’s rib cage and spine had fused and then slowly collapsed around her internal organs, greatly compromising her ability to breathe and swallow.
My symptoms started around age 12 with random and intermittent hip pain which got worse as I reached my late teens. By my early 20s, it had progressed into low back pain and begun to impact my large joints. By the time I was 22, I knew what it was like to be a powerful athlete one day and bed-ridden by all-over body pain and inflammation the next. The future looked very bleak. I was filled with denial and anger, but mostly fear – my mother’s crippled body and decades of her struggles filled my mind with desperation and terror. Beyond keeping myself employed, one of my very first concerns was, how will I be able to keep riding? I MUST keep riding.
At the time of my diagnosis, I was a motorcycle racer and a land surveyor. Significant life changes where inevitable. My athletic and hardworking self-image was evaporating. For a time, I felt lost. I raced for a few more years, but ultimately stopped and refocused my motorcycle passion into restoring and rebuilding classic motorcycles.
As an engineering technician working for the state transportation department, I was able to retrain and maintain my employment – at times, just barely. The Family Medical Leave Act of 1993 saved my career. Throughout the 1990s, I was struggling to stay employed and missed a lot of work as I painfully and slowly fused from pelvis to neck, including my rib cage. I knew just how fortunate I was to have career options and an employer that worked with me as I found my path forward.
When I started Remicade in 2001, my life of constant pain and inflammation turned on a dime. My spine and ribs had already fully fused, but the inflammation cycle finally broke and my core strength and energy started to return to levels that for years would have been unimaginable. In the end I was blessed to have a 40-year career and retired on my own terms on Friday, July 5th, 2019.
I wasted no time beginning my retirement. On Monday, July 8th, I began a dream motorcycle ride, a bucket-list adventure that dated back to dreams I had as a child, taking my first road trip with my grandparents at age 5. In the summer of 1963, I was seated between them on a little suitcase “booster seat” in the front seat of a Dodge station wagon. A lifelong fascination with maps began on that 1963 trip. My booster seat was filled with free gas station maps and travel brochures gathered at each stop. I studied the maps from my front seat crow’s nest as we traveled, while in my mind connecting the lines on the maps with our journey.
“What are you going to do when you retire?” friends and co-workers frequently asked. I was cautious with my answer, simply saying, “Take a long motorcycle ride.”
I first mentioned the idea of a “Four Corners Ride for Hope,” a summer-long national ride, to my wife about two months before I retired. I wasn’t entirely convinced I could accomplish the ride in one shot, but was giving it serious thought. It was an old, somewhat-forgotten dream of my youth, coming back into focus. Susan has been with me since before my diagnosis; she has been amazingly supportive through every phase of the disease – the denial, the anger, the desperation, and the deep depression, with us finally reaching our acceptance of what living with AS meant.
My goal was to reach all four corners of the continental U.S. at Madawaska, ME; Key West, FL; San Ysidro, CA; and Cape Flattery, WA. To add flavor to the itinerary, I knew quite a few remarkable Spondies via Facebook, going back many years – meeting some of these folks along the way would be a must. I wanted to stop at the SAA headquarters, too, if I made it that far. I also carried with me the ashes of my nephew Billy, who passed away just before Christmas. I planned to scatter Billy at each corner and a few other special locations.
I made arrangements with trepidation: Could I really do this? Would I be able to physically hold up to the oppressive July heat I’d encounter and a solid month of all-day-every-day riding?
I set off from Centerville, MN bright and early Monday morning with the basic goal of reaching one corner each week and bagging “Grand Tour” destinations as part of a motorcycle challenge organized by Team Strange Airheads, a Minnesota-based motorcycle organization. All aspects of the journey would have to be in balance for me to be successful: the desire to ride scenic roads balanced with mile-eating freeways; making exploratory and social stops balanced with keeping daily forward motion; balancing when to rest and when to push hard. In essence, the same life-balancing skills we all strive to cultivate as we live our best lives possible with ankylosing spondylitis.
I checked into a humble motor-lodge Monday night, happy to be well past Chicago, including a scenic, relaxing stop at Michigan Dunes Park to take in the southern tip of Lake Michigan. I made it to the northeast corner monument in Madawaska, ME on Thursday evening, just beating the rain that was moving in. Friday would be a wet ride, but the scenery was fantastic as I rode U.S. Highway 1 along the coast of Maine – making sure to feed my map geekiness with a stop at Lubec, the easternmost point of the U.S.
My first Spondy social stop was with Jennifer and her husband Doug on Saturday, at a coastal seafood restaurant just south of Portland, ME. It was an enjoyable lunch during which I tried clam “steamers” for the first time – yummy. Of course, we talked about our lives and frustrations living with AS, but we focused more on our passions and the joy derived from our mutual friends. I never had a chance to meet AS awareness pioneer Michael Smith, who became a good friend in the cyber world. Yet it was heartwarming to hear first-hand anecdotes of his charm and wit from one who knew him personally. It makes me sad to know I missed my chance to meet this amazing man in the flesh; Jennifer and I both were inspired to start writing haikus because of Michael.
After lunch I rode west into Vermont and New Hampshire. I stopped and toured the very inspiring JFK Library in Boston, adding a sticker to my helmet with the words “We Choose To Go” embossed on a view of the moon. It felt like a perfect fit, tying my youthful dreams and JFK’s leadership with the personal mission of this ride.
Two wonderful Spondy meetings came next near Boston and New York. My virtual friendship with Sean started with our mutual love of motorcycles and music. My friendship with Anna began when we commiserated as “elder” survivors and generational compatriots in our AS journeys. Anna is also a musician and artist. I thoroughly enjoyed meeting Anna; she is an amazing spirit that simply glows with a transcendent passion to live. If I have an AS sister, it would be Anna.
I crossed from Delaware to Maryland on the Chesapeake Bay Bridge-Tunnel. From Virginia Beach to Savannah, Georgia I stuck with the I-95 freeway in the oppressive coastal Carolina humidity.
My next stop was Tybee Island. At Tybee, I retraced the steps where Billy, my mother June and I traveled for her retirement trip to the Atlantic Ocean in 1981. Some of Billy was left on the beach near the hotel where we stayed. It was a moving day filled with thoughts of my mother and her life with AS.
When I compare my path with that of my mother’s, we run closely parallel in our posture and aggressive disease activity. But thanks to better disease understanding and management nowadays, I was spared the devastating disabilities she endured as she aged into her 50s and 60s. Mom passed away in 1988 at age 68, the kyphosis of her spine unimaginably severe. The last two decades have brought more spondylitis advancements than the previous two centuries. Imagine what the next decade may bring.
I traveled the length of Florida in one day and landed perfectly at Florida City, south of Miami, as my launch pad for the trip to Key West the next morning. On the road before daybreak, I was treated to a full moon under a star-filled sky as I headed down Highway 1. It was a slow, scenic, and relaxing early morning ride to Key West, truly magical as I watched the sunrise over the Atlantic under a full moon. I went directly to the southernmost point monument – I’ve wanted to capture a photo of myself and the motorcycle at this iconic location for many years.
The next day’s ride took me up to Orlando. I was greatly looking forward to visiting with my brother, John, and his wife, Ilona, just a few miles up the road at The Villages. After dinner we went to an ice cream parlor that had me in stitches – “adult” ice cream (infused with alcohol) and karaoke. Looking around, it dawned on me that at age 61 I was probably the youngest person in the ice cream parlor. A retirement age reality check flooded my melon.
As I left The Villages and turned west at the top of Florida, I was thankful that my ride was going so well and started to feel confident that I would be able to finish the entire route. I got off I-10 to swing down to the gulf coast at Biloxi, MS and get along the water to cool off. I was greeted by beautiful beaches and a wonderful gulf coast breeze. I took a loop into New Orleans, and then kept going west. When I crossed the Mississippi River at Baton Rouge, I had ridden over 5,800 miles since leaving home. This was almost exactly the trip’s halfway point.
I stopped at Lafayette, LA for the night and confirmed my next Spondy meeting with the remarkable Cookie Hopper – the woman behind The Faces of Ankylosing Spondylitis project and website. By chance it was her birthday the next day and I was not going to miss the opportunity to help her celebrate. Cookie and I had a very enjoyable lunch and could have talked all day. We parted ways with a gentle hug, and we shared our very best wishes for each other. Cookie is one special lady with true grit that we can all inspire to.
I was ready for the long haul across west Texas. I visited Fort Hancock to see if I could pick up the trail of Red and Andy from “The Shawshank Redemption.” In Arizona, I took a detour off the freeway and found a gravel trail out into the Sonoran Desert. I took a short jaunt into the enchanted desert landscape filled with saguaro cactus, and found myself far removed from the world, fully relaxed and in the moment.
I arrived at the southwest corner about midday and was disappointed to find the state park had been closed to vehicle traffic as part of border security measures. Dripping in sweat and in full riding gear, I made my pitch to the ranger to let me ride out to the end of the road; I didn’t think I was going to get a pass, but when I said, “just 15 minutes,” she relented. The U.S. side of the border was desolate and had more border guards than visitors; the Mexican side in contrast had a beach jammed-packed with sun worshipers and resort style entertainment right up to the fence.
Leaving the southwest corner, I was quickly introduced to SoCal traffic and motorcycle lane splitting. I traveled north of L.A. and stayed in Van Nuys for the next two days. The first day was spent kicking back and enjoying the area between Malibu and Santa Barbara with a minor motorcycle seat adjustment done in Ventura that greatly improved my comfort.
My meeting with the staff of the Spondylitis Association of America was great fun. I received a very warm reception as we shared tasty breakfast treats and talked about AS, the ride, their work, and the roles of the staff members. I was given a nice tour of the office and noticed quite a few familiar faces on their walls and brochures. Each staff person took time to chat with me and I even found a fellow motorcycle rider on staff; once Manny and I started talking motorcycles… well, the rest of the staff got back to work until it was time to say goodbye.
As I rode, my thoughts wandered back to one topic: What traits do we Spondies share? We each have different circumstances – some living full lives, some on disability, and many in between – but what is the common bond that makes our lives manageable despite the challenges we face?
It seems that acceptance must come first. I’m not talking about abject surrender, but an honest realization that one’s past self-image must be truly and fully released and adjusted to the reality of living with a chronic and progressive disease. Next, many of the Spondies I met share a sense of humor. We can laugh at ourselves and the strange predicaments we may find ourselves in due to AS-induced limitations.
Another shared trait is the knowledge that diet and exercise are powerful tools to supplement, but not replace, medical treatment of AS. We’ve all put in our time advocating for ourselves in medical settings, but we understand that good doctors are able to guide us as we strive to manage our own particular version of the disease.
Generally, we also have a support system in place. That’s not to say we haven’t lost people in our lives due to a lack of understanding, but it seems that most of us have someone we can count on. In my case, my wife knew my mother and had a good understanding of what I was facing.
Most importantly, however, the most fulfilled Spondies seem to hang onto and adjust our passions in life to the realities of our situations. For some it’s art or music; for others it’s family or faith. Most of us have branched out and found meaning and joy in spiritual, creative, or active endeavors. We have not stopped living, but we have adapted our old lives to our new realities.
I know how easy it is to say these things, and how extremely difficult it may be to realize them. I also personally know how deep the pit of despair can be and how hard each day, each hour, and even each minute we walk with AS can be.
After leaving the SAA on Thursday, July 25th, I started the most anticipated stretch of my journey. The ride up the Pacific coast to Cape Flattery, WA and the final northwest corner of the journey was stunningly spectacular. I spent two leisurely nights on the coast with the ocean right outside my hotel window; the first near Big Sur at San Simeon, CA and the second at Depoe Bay in southern Oregon. Sunsets, sunrises, fantastic coastal sights, sounds, and smells engulfed my being for most of the week. This was heaven and my only lament was that my wife was unable to join me for this part of the ride. In a perfect world Susan would have been able to fly out and meet me in San Francisco and ride with me to Portland. (We eloped in California back in 1990 and had our wedding and honeymoon on the Pacific coast.)
Flattery Bay, WA and leg four was achieved on Monday, July 29th. Walking out to the bay was so very special. To make it out to the actual corner on the map, I had to take a difficult hike through the woods. I was so excited to reach the northwest tip and forth corner. It was a surreal view and felt like nothing short of a miracle journey.
The final leg home was relaxing. I made plans to meet my wife and our hounds in Bismarck, ND the next Friday at a dog show. For the first time in three weeks, I had a place I needed to be. I had plenty of time to tour two national parks on the way to meet my wife. I took in both the beautiful mountains of Glacier Park in Montana and the Bison-filled plains of Theodore Roosevelt Park in North Dakota.
On this final leg I made two more Spondy visits. Both visits had me meeting inspiring families that were solid and loving as they faced the world – mothers and daughters, husbands and wives working together to live fulfilling lives while facing the uncertainty and challenges of AS. These final two meetings reminded me of the depth of character we as Spondies are able to cultivate when the chips are down. We have no choice but to make each of our hard-earned steps in life count. We are destined to learn that we are strong, that we are much more than a disease or a symptom. That we have the power to not give up or give in.
I could not have physically (or mentally) taken the Flattery Bay hike, let alone done the four corners ride, for nearly two decades of my life. I was, for a good number of years, struggling in the abyss of darkness that many endure facing this invisible, unpredictable, and painful disease.
This ride was ultimately about hope. To my fellow Spondies, I cannot say in strong enough words that your future is not written. The pace of medical breakthroughs has never been faster, and we know how to manage the disease so much better than just a decade ago. This “ride for hope” is in honor of every person out there suffering with spondyloarthritis and unable to get out of bed, walk across the yard, or see any light in the chaos of the pain and fear. I have shared that space with you all. There is hope and it is real.
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