June 22nd 2015
The Vision Quest is a 70 mile bicycle odyssey, it’s one of the best rides I have ever done but it should never have to be ridden again.
The course begins and ends on the Connecticut Shoreline and wanders incipiently through pastoral farmlands, hidden forests, and quaint historic towns. It can’t be labelled as road or a mountain bike ride. It’s an adventure and was designed to push a cyclist towards their physical and mental limits, some suffering is inevitable.
***
On a dimly lit September evening, the vision began. My voice cracked as I told my good friend, that I would be there to support him no matter what happened. Our conversation was short in time, maybe only a minute long, but enormous in space and our world… Earlier that day, my friend and family member, Kyle Connors saw a Neurosurgeon for a lingering back injury. After the Doctor reviewed his films, his back got a clean bill of health. He was unfortunately, very concerned about some of the other symptoms that were observed and wanted Kyle to see a neurologist to determine if he might have ALS. After a few visits with Yale Neurology, it was confirmed and Kyle had been diagnosed with ALS.
The next day I took my bicycle out for a longish ride on familiar dirt roads. Although physically I covered many miles, my mind was never present; I spent the entire time thinking about Kyle and my Cousin’s family. Towards the end of my ride, I was along a river and hit a slight uphill. I stood up and attacked the hill. Fatigue set in and my mind began to wander into an internal dialogue. Why is ALS so unknown? It seems like it’s everywhere. How could there be no cure? Its 2015 and we are still using many of the same treatments that Lou Gehrig received in the 1930’s. How can I try to make a difference for Kyle or for others? Maybe I could I somehow setup a cycling event…
***
At 9:10am on June 20th, I informally lined up (with thirty of my cycling friends) behind Kyle, his Brother, two Daughters and Wife. Behind the wheel of a vintage black Cadillac convertible, with red leather seats, they lead our group of cyclists along a mile of Connecticut’s scenic shoreline. After a few minutes, the Caddy turns off to the right, and the riders break left. The quest begins.
The first 10 miles can serve as an abstract for the entire route. Single track, double track, chunky gravel power line trails, maintained gravel roads, and fast pavement. On the pavement, we pass near the homes of two young people who are battling ALS. At mile 9.6 the GPS beeps aloud, “Fuck ALS”. Riders are pushing the pace high, probably too high but we roll on.
***
In January, I created a Facebook event and invited about 20 local cyclists.
Dear Friends,
I would like to invite you to Rad & Gnar’s Vision Quest- Cycling for a Dream…
I invite you to dig deep and suffer with me during this ride so that our “vision” will help alleviate some of the suffering caused by ALS (amyotrophic lateral sclerosis). This disease recently hit our family and 100% of the donations received will go to My Hero and friend as he bravely battles this horrible disease….
[…]
***
I am by no means the fastest or best rider but I designed the course and therefore end up leading the group through the first few technical sections. Flying at about 16 mph, down a rocky downhill, the line of least resistance zigs left, then zags right, and then zigs; BAM, I slam my front wheel into a large angry rock. I keep rolling fast but say to myself, I can’t believe my tire didn’t flat, that hit was too hard to have not flatted. A moment later a familiar soft feeling of a flat tire was evident; I pinched the tube in my front wheel. I pull to the side of the trail to repair it and the group stops; unsure whether to leave me or stay. I tell everyone to roll on and I’ll catch up. Most riders continue but three stay with me. It turns out that we will stick together most of the day.
***
Symptoms of ALS are usually varied, one person may have trouble holding a pen or lifting a coffee cup, while another person may experience a change in vocal pitch when speaking.
Mile 39.5 has us travelling down route 148 towards the beautiful town of Chester. This paved slightly downhill section pushes our pace high; my average speed is 24 mph. I stay low on my bike and keep my hands clenched tightly to the lower dropouts of my handlebars. Chasing the lead group, in hopes of getting into their wind shadow, my heart rate climbs and legs burn. They are too fast, I am on my own, a moment later my left hand goes numb; is this what ALS feels like?
***
Three and a half hours into our ride we pass a lichen covered cliff and roll towards the base of a large climb. The tacky brownish road ascends for approximately 300 vertical feet within .9 miles. The road has rolling water bars that allow you to sneak a short break if you pump down their backside, like a surfer riding a wave. I push my derailleur into a 30x28 gearing, put my head down and begin climbing. Pain quickly enters my body through my feet, works through my legs, up into my lungs, and then into my head. My mind begins to panic- this is pain and then like a montage from a bad movie, thoughts flood my head …. Am I pushing too hard? Will I be able to finish? Am I going to cramp? I shouldn’t be going this hard, right????
Then within a tangible moment of time, my mind becomes still and clear. My bike rolls on and the focus is on the rhythm of the road, the vibration of the dirt, and the circular motion of my crank; all negativity is out of my mind. Time is slower yet the pain is gone. I visualize myself talking to Kyle and his daughters but weirdly it’s in the future, probably 10-15 years from now. Our conversation revolves around the promise I made to him back in September, and I again promise that I will stand by his side no matter what happens.
***
“Less than one mile until the bacon station guys, we are getting there, just one hill between us and the bacon.” I said to the other three riders shared my day with.
I enjoy endurance cycling for the physical challenge but I love endurance cycling for the mental challenge. Now I’m no spectacular athlete and I’ve found that my natural physical ability to pedal a bicycle, climb a mountain, or backcountry ski is good but nothing special, my ability to push my mind to endure these obstacles or problem solve these obstacles is by far my greatest natural strength.
Similar to how an endurance athlete can fool their mind into pushing past pain or exhaustion, fat has a way of tricking one’s mind into thinking they are receiving more fuel than they are and because of it our bodies physiology will release more available energy. At least this is what I learned in my formative years from Mark Twight’s book, Extreme Alpinism. But anyways, because of this, while planning the course, I knew the Vision Quest would need a bacon station late in the ride. Bacon or a meat stick is the ultimate secret weapon for an endurance athlete.
The climb to the bacon station is on pavement and its steep but it’s not too long. However, after pushing a tempo pace for four plus hours, it’s easy to become disoriented. Our group pulls into the Bacon station and Kyle is standing there. “Yeah, good job guys, good job John Biehn, you want some bacon?” He says. Slightly confused, I look at him, and think back to the conversation I visualized while climbing the challenging dirt road just thirty minutes prior. Kyle? I question. What are you doing here? Yes, I want some bacon! I almost couldn’t believe he was there and for a split second thought maybe I was hallucinating. It just seemed too much like déjà vu or a dream to be real but regardless I gave Kyle a huge hug and couldn’t be happier to see him there.
***
As I've mentioned, I spent most of the day riding with the same group- Greg C, John B, Dan S and Hugo B. And although we chat about nothing important, I feel there is an unexplainable bond that unites riders. I have fond memories of watching John blast through puddles and catch air over every natural jump, seeing Hugo lay down power on his mountain bike, hearing Greg giggle as we bounce down ridiculously rocky roads, and seeing Dan look like he fell asleep on his bicycle. We had a great crew for the day.
***
At mile 60 we roll into the “Dark Visions” and as we take the sharp right onto the trail we are engulfed in the dark forest. “Dark Visions is really living up to its name today”, I say aloud. I could feel that the temperature has been dropping and although it’s almost the longest day of the year, the sky is very dark- especially for 2pm. This is our last off-road segment and the most technically challenging of the course. After an incredibly rocky downhill, there is a hundred yard hike-a-bike along a rocky creek, which is followed by rocky single-track. We bomb down the trail as if we are on downhill bikes and when we hit the gravel road our group of four is now only two.
***
Nearing the finish line, we reunite with Hugo. The three of us roll towards the shoreline on pavement and the cool air now smells of marshes and brackish wetlands. Looking over Seaview Beach, I congratulate my bicycle comrades on an amazing and memorable ride. As we put out our final effort and roll towards the finish line I see Emma, Kyle’s Daughter, standing next to a cone waving to me. The cone is about half her size, she is still only six years old. Upon seeing her, I instantly go back to the dirt road climb where I envisioned her and Kyle in the future and think of the conversation we had. I roll through the finish line and unclip from my bicycle pedals and am greeted by cheering family and friends. “Congratulations! “ gets shouted from a variety of directions. But my mind is still on the quest and I think of the conversation I had with Kyle last September, and the conversation I envisioned while climbing that dirt road hill and the promise I made.
***
So why should the Vision Quest never be ridden again? Good question. Maybe the Vision Quest shouldn’t happen because it served its purpose this year? It made clear to me that I will be by Kyle, Kati, Emma, and Bryce’s side no matter what’s to come. It also made clear to me that to develop a cure for ALS it must be seen and given a voice. But the real reason I don’t want to do the Vision Quest ride again is because I want this terrible disease to become curable NOW.
Sadly, this orphan disease has already claimed the lives of too many amazing people and yet it remains hidden away and underfunded. Every ninety minutes somebody is diagnosed with ALS and another one passes away. Currently there is no cure and most people with ALS live 2-5 years after their first signs of disease.
The urgent unmet medical need for effective treatments for ALS is tragic and embarrassing. Enough is enough, please speak up, inform others, and push your local lawmakers, healthcare professionals, and Government officials to support more research and drug development for this devastating and fatal disease.
There are many great institutes working to fight this disease. If you would like to learn more please visit www.alsa.org & www.asltdi.org.
If you would like to learn more about my families fight against ALS please visit www.myherofund.org.
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Epilogue:
The 2015 Vision Quest is a ride I'll never forget and I am so thankful to have shared it with friends, family, and my fellow cyclists. If you shared the trail/road/gravel with me that day, I hope you also felt how special the ride was.
Although, it is my dream that the Vision Quest will never need to be ridden again to support a fight against ALS. I will GLADLY host something similar to celebrate a found treatment or cure for ALS. Until then, the Quest continues for all of us. Thank you all for joining me on this ride!
