As a physically active person throughout my childhood, it was a journey to find answers for the physical oddities taking place at 20 years old. This mystery would take years to diagnose before I would learn I had GNE Myopathy, a progressive and very rare form of muscular dystrophy caused by a genetic defect, affecting only 1,000 people worldwide at the time. While progression can be slow, the most common prognosis is complete immobility.
Today, I’m a quadriplegic. I’ve been living with GNE Myopathy for over 20 years and it has completely redirected my life. This unexpected turn has pushed me to live my life for the now, and I’ve done some incredible things because of it. I have banked endless road trips through mountains, along oceans, desert, and valleys. I have seen most of California, neighboring states, and the Baja coast from the car. I’ve traveled around the world, skydived, parasailed, skied, dived in the Great Barrier Reef, and sailed along the Pacific Coast Highway on a 500-mile cross-country bike tour from San Francisco to Santa Monica with my friends—all while being a wheelchair user.
I’ve been a public advocate for my rare disease and disability for 13 years. One of my advocacy projects I did to increase awareness and fundraise was Bike for Kam.
Bike for Kam
I’m always looking for an organic excuse to have an adventure, so when I saw my friend Viet’s Facebook post in 2010 sharing that he was itching to cycle Big Sur and the Pacific Coast Highway, I immediately messaged him and asked if he’d want to turn his flippant post into a real project. He agreed. In 2011, I launched Bike for Kam and was a one-woman team for six years, handling every aspect of the project including blogging my friends’ daily adventures. Storytelling is important, it’s a way of sharing and connecting. So for every ride, I would do a daily blog post documenting my friends’ adventures from the road so our supporters could experience it. By this time, I had become an avid roadtripper and it was disappointing that I couldn’t join my friends on the road, and instead was forced to experience it from behind my computer screen.
But in 2016, I decided I wouldn’t be saying goodbye to my friends at the Golden Gate Bridge before sending them off on a 500-mile bike adventure—I would be joining them on the road in my final year of running Bike for Kam.
I’m an industrial designer and my fellow alumni and industrial design friend who had ridden in a couple of Bike for Kam rides offered to build me a rig so my friends could pull me along.
At the end of May, on a beautiful sunny San Francisco day, we all lined up for our traditional team photo like we had all the years before, only this time I was sitting in what was essentially a homemade plastic bucket hooked up to a bike, while riddled with nervousness and excitement. I would finally get to experience this 500-mile adventure, not through my friends’ eyes, but my own.
As 10 of us departed Golden Gate, we soon ran into struggle. With me joining, the ride would in many ways feel new for my friends, forcing everyone to learn and adapt to new dynamics. The biggest difference was pulling another human along, and not even a mile into our journey we struggled to do this. It took teamwork as we discovered that the uphills would require more than one person to pull me, so Viet broke out a tow rope and tied it to his bike and our friend Andy’s bike that was connected to my rig. In symbiotic fashion, they pulled me out of the Presidio and soon developed a system that landed us in Half Moon Bay for the night. In years prior, my friends had carried all their gear without support, but with me along we needed a support van to follow us, which my husband Jason drove.
Planning, research, and resilience
I really love camping, I love nature, but it doesn’t love me. When you’re disabled, road trips look much different, and immediately the team begins experiencing the challenges that often occur, like finding bathrooms in the middle of nowhere, and accessible ones at that. Going to the bathroom when you’re disabled is an entire operation in itself. This isn’t new to Jason or me, but my friends had a raw window into how weak I really was and what daily life is like for me as a disabled person.
Everything is more difficult when you’re disabled, and despite my spontaneous spirit, planning and researching is required. So is resilience. These kinds of adventures aren’t easy on my body, but it’s almost always worth the pain and fatigue.
The second day was one of the most difficult as the team had strong head winds and rain, making it nearly impossible to pull the rig the entire day. We were expected to cross the Santa Monica finish line in eight days, so to make up for the setbacks of the first day we had to clock 100 miles just to get us up to schedule. Jason and I traveled back and forth on the PCH offering van support, food, and water as my friends pressed forward with a Monterey campsite in mind.
As the days rolled on we began to lose track of where we were and what day it was. By now I hadn’t showered in four days. There’s no such thing as accessibility in campsites. I was also feeling emotional because while the time was amazing, there were many moments I felt melancholy because I couldn’t do what my friends were doing. While I’m always grateful for the things I do and see, there are naturally times when I want more—when I just want to be “normal” so I can have simple access like everyone else. I was also physically exhausted from adapting to these new environments, while maintaining all the demands of the project from the road: from organization to blogging and PR. But the tears were soon followed by the most amazing day as we cycled through Big Sur and Carmel via Pacific Coast Highway.
For me this was my favorite day of our eight-day tour. This day and the day my friends pushed me down Harris Grade Road in Lompoc. After screaming downhill at over 35 mph, right before my friends almost forgot to put my seatbelt on, I learned that Harris Grade is a legendary (and allegedly haunted) road due to its dangerous and winding plunge that’s caused many deaths. At the end of this descent, my friend Markham, who was pulling me and built the rig, said, “I’m glad the rig made it down without breaking, we never tested it.” Imagine my surprise when I found out I was a test dummy.
Freedom in the moment
When you’re cycling together, communication is vital—and even more so when you’re pulling along another human. My friends had to constantly look out for each other to warn of possible dangers ahead—moving cars, lights, and turns—and this was even more important in Big Sur with multiple friends towing me as we dominated an entire lane. I loved hearing my friends communicate in unison on the road, another thing I could only experience because of the rig. Comradery was always a frequent word my friends used in prior years, but witnessing it firsthand was very different. I felt like a proud mama.
Everyone was on an adrenaline rush after completing Big Sur and we were met with the most glorious reward: A glowing sunset ushering us toward our San Simeon campsite. We were in isolation and our ragtag gang overtook the road. We passed golden fields, ocean waves, and California farmland as we coasted through some great climbs and downhills. I’ll never forget being in the rig in the middle of a remote area while watching my friends bike around me, laughing and joking as the sun’s setting rays seemed to chase us. It reminded me of the days as a carefree child when my friends and I would take up the neighborhood street with our bicycles while enveloped in the feelings of freedom and the moment.
Our next stop was Lompoc. On the way we stopped in Morro Bay for a spontaneous TV interview with KCBY who happened to find us on Instagram. We also picked up some friends in Guadalupe who could only join the ride for the last couple of days.
The first few days of this ride I thought it would never end, but now the days were sailing by, to my dismay. By now everyone was riding strong and group dynamics had grown so close, but I was bummed as we began seeing familiar cities like Santa Barbara, Malibu, and ultimately Santa Monica, the finish line. The trip was amazing and I just didn’t want it to end.
Uphills and downhills
The days were difficult but the nights and mornings at campsites is where we could gather, joke, and barbecue while retelling the stories of the day around the nightly campfire. These were always the best times. Perhaps there was some skinny dipping at one point. At night I would also do intimate “van interviews” with my friends and upload their experiences and personal feelings to our blog.
On this trip were many rolling hills and I couldn’t help but look at these uphills and downhills as metaphors for life. Like on this bike trip, there is undoubtedly an endless supply of uphills and downhills in life. On the downhills you’re coasting through life, it’s the most fun part of the ride and life is good. But the downhills are inevitably followed by uphills that feel like an endless struggle. The road won’t adapt to you, you have to adapt to it.
Through the years, every person who completed a Bike for Kam ride had zero touring experience or training. I personally get satisfaction witnessing people try new things and the gratification they receive when they complete something they didn’t know they could. The fact that this was life-changing and it would forever be a memory of a challenge they overcame has been one of the more rewarding experiences of Bike for Kam. This wasn’t just about coming together for a friend and fundraising, it was also a personal life challenge for many.
Road trips remind me of my progressively debilitating body. Life almost never goes as planned and you’re forced to deal with uncertainty, be adaptive, flexible, and go along with what comes. You have to be OK with negotiating, compromising, and the discomfort of entering unknown adventures. And, just like in life itself, we’re all traveling through the tunnel of the unknown, never truly knowing what is on the other end.
I usually prefer roadtripping with only one person. The connections, moments, and intimacy are different than in a group. And let’s face it, we can’t be stuck on the road with just anyone for days on end. But Bike for Kam was different. There was comradery, there was purpose. There was just enough risk taking—perhaps there could have been more. There was freedom in spite of necessary planning and control for safety’s sake. There was intimacy between each other and within ourselves. The silence for miles that even seemed to drown out the road trip tunes playing on our personal music devices was intoxicating. So often we avoid this silence with ourselves; the time to slow down, reflect, and reinvent, if needed. But on the road you’re forced to face it, live it, and breathe it with no particular place to be.
I love road trips because they focus you in the now. It’s the freedom and the suspense of the adventure unknown that attracts me. It’s an excuse to let go and live for the moment. I love the conversations, connections, community, the unexpected people you meet and the love that can come from the road. The open road is a break from following capitalistic demands and instead is a pursuit of oneself. It’s an empty notebook waiting to be filled with stories. It’s about purposefully embarking on a journey to discover, fulfill curiosities, and be surprised. It’s about solace and connecting.
Life can sometimes drag us through the mud, cut us up, and leave us on the side of the road like roadkill. But it is the exchange of human companionship, touch, stories, community, and understanding that reminds us why we are here. But these moments aren’t just thrown at us, it’s up to us to be the seekers and run (or roll) toward them, and that is what a road trip accomplishes.
After the pandemic ends we all should be in a fury to reconnect, go on road trips, and spend time with the ones we love and so dearly miss. Don’t return to normal. Consider this pandemic a lesson on how fragile time is, on how fragile life is.