To Every Neuropathy Warrior Out There,
I noticed the beginning of my neuropathy about 15 years ago. Burning in my feet was so bad I would stand in the snow when possible. Of course, that was only 3-4 months out of the year. Eventually, the heat turned to freezing cold. I couldn’t do anything to keep my feet warm. They were still burning but freezing at the same time. Crazy.
Within five years, my neuropathy traveled to my limbs and into my trunk area. Wearing shoes was self-torture. Typing felt like my fingers were sliding across shards of glass. I started using pencils to touch the keyboard—work that should have taken 30 minutes quickly turned into two hours. I couldn’t concentrate, work or sleep. My mood deteriorated fast. Because the company I worked for cared only for high output and growth, I knew the time had come to file for disability.
I tried everything possible to get relief. I spent thousands of dollars on non-approved insurance treatments. If you google neuropathy treatments, it’s likely I’ve tried every one. My neurologists and pain management doctors were at a loss. Through EMG and skin punch tests, I tested positive for idiopathic peripheral neuropathy. The disease had affected nerves and muscles throughout my entire body.
Neuropathy is an underfunded disease with little known about it. My only pain relief came from opioids. I didn’t like them and had taken them only rarely for several unrelated surgeries in the past. I always considered myself a strong person. I could push through anything until neuropathy took over. I still take opioids for occasional relief. But with opioids, you must cycle down or off them to reset your body; otherwise, you have to keep increasing the dosage for relief. The reset cycle is no fun.
Disability brought on an entire new set of problems. After a year, loneliness, boredom and depression set in. I became intolerant of temperatures below 60 degrees, which was a total flip in my experience. I had always run hot and hated summer temperatures.
Because of Utah’s cold, long winters, I started to go south for three months each year. I walked as much as possible outside to slow my increasing muscle loss and weakness. But within a short time, it became too painful to walk around the block.
Because of increased pain throughout my body and diminished mobility, I fell into a deep depression. I thought, “For the rest of my life, I will be bedridden and in so much agony, why live?” But with the help of my family and very close friends, I improved. A little. I knew I still needed something more in my life to give me a purpose to live.
While in the Palm Springs area one winter, I rented an Ebike (pedal assist with a motor) and loved it. After a couple of rides, I thought, “I can do this!” In the spring, my wife bought me one for an early birthday present. Within a relatively short time, my depression was gone. I was exploring new trails and areas in my hometown I didn’t know existed. I loved it so much, I started to plan riding courses for each day. The pain didn’t go away; in fact, it got worse at times. But I didn’t care. I felt a newfound freedom.
Fast forward a year: I have new tires, new tubes, racks and bags. I bring my bike charger with me now and can ride up to 70 miles a day. A few months ago, I had an epiphany. “If I can do 70 miles a day, I should try riding from my house to one of my favorite vacation spots, St. George, Utah—a 375-mile trip!” I kept that insight to myself for a few days, then decided I was really going to do it.
When I told people about my idea, some responded warily, “Really?” but supported me anyway. Others just let the truth fly and said I was nuts or that I’d never make it. One of my best friends and supporters, Scott, said he would ride with me. I told him I didn’t know how long it would take —maybe a week or even two weeks. He didn’t care. He was in. He helped me navigate every step out of depression. He also saw how my bike played a pivotal role in getting me there.
Me being me (always thinking and wanting more), I thought, “Self, you know there are others who are in the same spot as you. Why not try to raise money to buy them an Ebike?” I am lucky to be able to afford one, but so many others on disability because of neuropathy can barely buy food and necessities.
From this idea was born Pedal Through Pain, a 375-mile fundraising ride. Scott and I started to map out a course last winter and decided on a date. Then Covid-19 happened and shut it down. How could I ask for donations during these times? After a few months, I thought, “My pain hasn’t let up, and neither has pain for so many others—I have to do this!”
September 14, 2020 is the launch date of my Pedal Through Pain ride. 375 miles through Utah’s west desert leaves little exciting to see. But Scott and I are excited. We have scheduled five days to complete it, but neuropathy has a mind of its own. I am pretty stubborn and will push through a lot, but sometimes neuropathy bodies say enough is enough.
The support from so many has been amazing. We are $1000 away from giving away three Ebikes worth $2500 each. We have also received a donated Ebike. My heart melts with joy because of the kindness of so many. Three or four complete strangers will get back a little freedom because of the selflessness of so many.
I believe that to live with neuropathy we need to find our passion. Biking is my passion. It also gave me the courage to play pickleball. When I first started, I fell a few times and stumbled across the court. But after about a month, I regained some balance and muscle memory. Pickleball is now my second passion.
Neuropathy keeps finding new ways to disable the body and create constant, unforgiving pain. I have found that keeping my mind happy is the best way to deal with it. Find something you love and do it. It doesn’t matter how good you are, how fast you are, or what anyone else thinks. It matters that you do it. We are going to be in pain anyway, so we might as well have some fun! Yes, we will have down days, but that’s okay.
I am a Neuropathy Warrior. Will you be one, too?