2024 marked the 15th anniversary of his official classification of being “legally blind” due to Stargardt’s Disease, an inherited genetic condition that causes central vision loss.
On November 4, 2009 a state social worker came to my house just outside of Boston, Massachusetts. A week earlier the day I’d been dreading for years had finally arrived, the Massachusetts Commission for the Blind had received a letter from my ophthalmologist. The letter stated that my vision had deteriorated to the point I was considered legally blind. As you would imagine, that day changed my life, but no one would have predicted how.
For the past nine years I’d learned to live with a diagnosis of Stargardt’s Disease, an inherited genetic condition that causes central vision loss. What started as a blurry arch near the center of my visual field slowly progressed into a donut shape. Althought the blind spots continued to grow, the very enter of my visual field wasn't effected, so my visual acutity remained high, near the 20/20 mark. But then the blurry donuts filled in and I was no longer able to see what was directly in front of me. It was at this point when my vision degreaded 20/400, meaning I need to be 2 feet away to read text that most people can see from 40 feet away. After being declared legally blind and surrendering my license, asocial worker came to my house to help me adjust to my new status. He handed me a white cane, the universal symbol of blindness, and told me I needed to learn to use it, “to preserve my mobility”. I wasn't ready for that just yet.
I’m fortunate enough to work in technology and was (and still am) able to do my job with the help of assistive technologies. The problem I faced was I no longer had a driver’s license and had no way to get myself to the office – in those days, working remotely wasn’t a realistic option. The state offers a para-transit program, but I was too able-bodied to qualify for the program. My commute was just over three miles each way, and you don’t need a license to ride a bike.
The next day I went to the garage, dusted off an old bicycle, threw my leg over the saddle, and headed off to the office.
I'd lived a pretty sedentary life before this and I'd become a pretty big guy – the scales topping out well over 300lbs. Those first days of bike commuting weren’t easy. That 3 mile commute would take me nearly an hour, with several stops along the way to rest and recover. My lungs burned and legs ached day and night. But I did it, and with no major incidents, I kept at it.
As the days, weeks, and months went by, I grew stronger and started shedding a few pounds. Soon enough I started riding just for fun. Things really ramped up when a friend invited me to his early morning cycling group and we’d get 20 miles or more in before the workday started.
The fire was lit. Over the subsequent years I rode ever-longer distances and looked to challenge myself by finding harder cycling events, like time-trialing the climb up Mout Washington, the tallest mountain in New England, or a 150 mile ride through the Green Mountains of Vermont.
With the success I found riding on the raod, I took a crazy leap and decided to revisit my childhood passion for mountain biking. At first I found every rock and root in the trail and spent more time crashing than riding. Eventually, I learned some techniques like "erratic fixation" to identify obstacles and worked on fundamentals like body position and weight distribution. Soon enough, and with help from advances in bike technology like larger wheels that can roll over more obstacles, I was able to ride alongside fully-able mountain bikers.
The passion for challenge and adventure continued unabated. Soon the 10 year anniversary of being handed the white cane approached and I needed to find a milestone. That year I entered the Leadville Trail 100, an infamous event known as "the highest and hardest one-day mountain bike race in America". The "LT100" is a 105 mile race that traverses five mountain passes, all above 10,000 feet of elevation, and at times reaching nearly 13,000 feet, and athletes have just 12 hours to complete the challenge. Still a big guy at over 240 lb, I gave it my all and pushed myself harder than I ever had, relying on blind faith to get down the steep mountain passes, riding faster than I could see what was coming. I crossed the line in 11 hours, 57 minutes, and 53 seconds - just over 2 minutes to spare.
Five years later, I looked for the next challenge ... and found the Tour Divide.