“There is only one rule. You can’t give up.” This is the advice I give someone when diagnosed with multiple sclerosis. It’s probably the only rule that matters for everyone even Lance Armstrong.
I recently heard Jesse Itzler retell a story Lance Armstrong shared with him. Regardless of how one feels about Armstrong, the story puts forth a lesson, and it is a lesson with which I wholeheartedly concur and must live every day.
Lance was speaking about a time when he was struggling in the middle of the Tour de France. He wanted to get off his bike, and his coach could see Lance’s mindset and state. It just wasn’t his day. In the midst of this, his coach told him that no matter what, Lance cannot get off the bike. Lance had to keep peddling. His coach knew that if Lance got off the bike, it was over. Perhaps the coach meant the race was over, or maybe he meant Lance’s career because quitting is a fundamental mind shift from which it’s hard to come back.
When I heard the Lance Armstrong story, two things came to mind. The first was the Cystic Fibrosis Foundation (CFF).
I have spent the past few years working with the Foundation and those with cystic fibrosis. On December 31, 2018, I completed my year as Board Chair/President of the CFF Gateway Chapter and my first year as Gala co-chair. The previous years, I served on the executive committee and as committee chair for FestivAle, the annual craft beer event.
My involvement with CFF began when I was searching for a way to give back. I chose CFF because one of my closest and oldest friends has this life-threatening disease. I may have also picked them because of the aforementioned craft beer event held committee meetings at breweries. I failed to anticipate the positive impact it would have on me (and my later diagnosis).
Those with CF who are over the age of 30 are living beyond expectations a few decades ago. When most were born, high school might have been possible, but college was usually not in their future. Life expectancy charts did not allow for long-term dreams and plans.
The community and those with CF keep peddling, and they do it with an eye toward adding. That is not just those with CF. It includes their parents, grandparents, aunts, uncle, brothers, sisters, and sometimes a close friend. It is not an accident that their motto is “Adding Tomorrows.” All of that work led to small changes and significant breakthroughs – enzymes, vests, CFTR regulators, and many others.
Since 2015, the majority of the CF population is now over the age of 18.
Those I have met in the CF community know that they must keep peddling. The community acknowledges the pain. It also celebrates the successes and appreciates every win, every additional tomorrow.
My exposure to the CF community has provided an incredible view of true grit and genuine hope. It’s incredible how much insight this has brought to my diagnosis and perception of it.
This leads to the second thought. Is there a stark difference in emotions and perception between being born with a disease or condition vs. developing and being diagnosed after decades of seemingly normal health? Is this the difference between addition (of life in quantity and quality) vs. subtraction (of life in quantity and quality)? If so, maybe we need a mindshift. What can those of us with MS learn regarding how we tackle our futures and our perceptions of it?
Compare the homepages of these two organizations, and one sees the stark difference. The CFF.org homepage talks about the “dreams of people with cystic fibrosis and their families.” The background images and videos show celebratory moments, such as weddings and graduations. These are people living their lives with CF. It does not take away the pain and realities of CF, nor does it allow them to override the success of living with CF. This approach amplifies hope and grit.
In comparison to CFF.org, the National MS Society homepage regular uses pictures of those negatively impacted by MS.
There is something broken with multiple sclerosis beyond the disease itself, the risks from medicines, and the general populations’ lack of knowing what MS is. (Don’t ask me how many times someone has asked if MS is the disease for which Jerry Lewis telethons raise money.) It heavily leans towards the negative.
We should talk about how this is a never-ending fight. It’s akin to holding a glass of water with a straight arm. It is easy to do for a few seconds, not fun for a few minutes, and painful for a lifetime. Perusing the Facebook MS groups and the MS subreddit, one sees this pain and the horrible effects of this disease. We need peers to share our pain, but it trends too much on the negative IMHO.
I am concerned because of the contagion of negativity and pain. Mark Manson wrote about drama and pain.
Pain is contagious. It’s like a virus. The more we hurt, the more we will feel inclined to hurt ourselves further and to hurt others further. Our own perceived shortcomings will be used to justify further destructive behaviors towards ourselves and towards those around us.
“How To Grow From Your Pain”, https://markmanson.net/how-to-grow-from-your-pain
When I was first diagnosed, this non-stop message of pain only added to the situation and reality of the unknown. It attempted to pull down to the bottom like quicksand. It attempted to deplete hope and grit. We also need peers to share our hopes, successes, and dreams.
We can do better, and we should do better. Perusing those same MS resources, one also sees the camaraderie of the MS community. This should be the foundation to talk about our successes living a regular life while fighting MS. We need to talk about the pain while continuing to live non-perfect yet beautiful lives.
When I stepped forward, I committed to myself that part of that journey would be helping others diagnosed MS warriors. I would tell my story and share my experiences. In that light, please know that I have bad, even horrible, days. I am grateful they are rare.
A few months ago, I spent nine consecutive days in pain. The peak of the pain occurred at night. I woke up screaming because the sheets and blankets hurt. I could not take anything touching my skin. I would describe it as being burned without feeling the heat. What did I do during these nine days?
I got my ass up. I focused on being a great husband and father. I went for a run. I saw my personal trainer and did my daily running strength exercises. I went to work to lead an incredible team. I served my community.
Why? Because I remembered one fact in both the good and the bad moments. It’s something I learned from a person with CF. Every second is a gift. Every day is a gift. They are opportunities to live, to breath, to connect with someone, to achieve, to fail, to love. It took being diagnosed to hear this message.
Regardless of how I am feeling, I push never to lose sight that I was given the gift of time. How I feel and what I think should never take from those gifts. I have a responsibility to respect and appreciate them.
That brings me back to the Armstrong story and a third (bonus) realization. I realized I was on the bike, and I would never stop peddling. I am not alone. All of us are on the bike with our unique struggles – family, children, weight loss, health, money, a loved one dealing with a disease, etc.
Let’s stay on the bike and make sure we are helping the other stay on theirs. There is only one rule – you can’t give up. You must stay on the bike.
I am a (doting, loving) father. I am a (faithful, nightly cuddling, giddy) husband. I am an (intensely loyal) friend. I am an entrepreneur. I am a (math and computer) geek. I am a mentor and a mentee. I am an ultra marathoner. Oh, and I have multiple sclerosis.
Three years ago today, Courtney and I walked into a doctor’s office. We left with what we knew was the outcome. I was diagnosed with multiple sclerosis, specifically relapsing recurring multiple sclerosis. It started with an MRI to check some neck and spinal issues. It was followed by Courtney ordering a full with and without contrast MRI. It culminated with the official diagnosis that day.
This will come as a surprise to many, including some very close friends and family. Please know that is a reflection of the situation rather than my love for you. We told very few people in order to limit the exposure. We wanted to protect our family and our children. We wanted to ensure we had the answers to our questions which would be their question. We wanted them to see how it has not stopped our family. We wanted them to all be old enough to know rather than have 1 or 2 hold the secret. We wanted to be able to prepare them for what others may say, think, and whisper. Time gave us that breathing room and allowed us to not live on the margins. We only recently told our incredible kiddos.
Graciously share, and help people be the best they can be.
– Bob Cancalosi
Why am I talking about this now? Because I am tired and angry. And neither of those are symptoms caused by MS.
When I was first diagnosed, I researched everything I could about MS. It painted a picture of a very difficult life. It was a life spinal taps, canes, wheelchairs, hospital beds, MRIs, pain, etc. Many of these were covered by the phenomenal organizations working hard to cure MS. I understand why. These stories and images create emotion, and emotion drives people to open their wallets and purses. They are working to ensure this disease is cured.
This is a noble goal, and I commend everyone working on it. I have already benefitted from their relentless commitment and will hopefully benefit from a cure. These stories are also the realities for many with MS. That can never be forgotten. I repeat – these stories are the realities for many with MS and that can never be forgotten.
Yet, these stories were scary for me. These are all I found when I searched online. They might be driving energy and money to find a cure. This will create tomorrows for those with MS and their families. Yet, they were destroying my todays.
I am tired of only these stories, and I am angry at only these stories. These cannot be the only stories and experiences. I believe they are having another impact, and it’s not positive.
I have been blessed to meet and talk with numerous people with MS. Too many have given up their dreams, goals, and lives to this disease. Some of it was because of the symptoms and realities of the disease. Some of it was because the disease emotionally and mentally stole it. I met a woman who decided against having children because of her MS. She has not had a relapse in nearly a decade. My nurse coordinator gave up cycling months after being diagnosed. She still had the strength and balance to ride. She told me her fear of the disease paralyzed her.
Bow our heads and pray to the lord
Til I die I’m a fuckin’ ball
– Who Gon Stop Me by Kanye West & Jay-Z
Since my diagnosis, I have completed the Contegix investment by our private equity firm. (Small side note – our PE firm was extremely supportive of my decision to become public. I can not rave enough about the team and their character.) I took an 87-mile jaunt through Leadville that was cut short by a torn hamstring (not my MS). I have given a dozen speeches on tech, entrepreneurship, and the future of Saint Louis. I have become scuba certified and completed over a dozen dives. I have logged thousands of miles running. I have made coffee for my wife nearly 1000 times. I have hugged my children too many times to count.
I have bad days. The most common issue is pain, especially something known as the “MS Hug”. I had one a few weeks back on a Sunday. Courtney asked me how my day was as we settled into bed for the night. I shared I had been in pain most of the day. She seemed very surprised and ticked off a list of things I had done that day. From picking up donuts for the kids and a sleepover guest to running 15 miles to taking the kids to lunch, I was in pain.
She then asked why I didn’t just relax and take it easy. I told her that I was going to be in pain most of the day regardless of what I did or what happened. That day, like every single day, is a gift. I was not going to waste a gift. Pain was going to be there, and I had enough strength to push.
I strive to live my life with integrity, authenticity, and grit. I am going to continue living my life the same. Every second is a gift to make the world better for myself, my family, my community, and the world. I believe this is only achievable by going after impossible goals and helping others do the same. My MS is merely part my journey.
Thus, I am going to share more in the hope it helps those struggling with achieving their goals, including those with MS. I am going after Leadville Trail 100 in 325 days. I am working on my next venture to fix a century-old problem. I will walk my daughter down the aisle one day in the far-off future. I have huge goals for myself and my family. I am going to set sights on the impossible. Oh, and I have multiple sclerosis.
Two weekends ago, I had the opportunity to crew and pace a friend, Jeffrey, making his second attempt to run the Leadville Trail 100 race, aka LT100 or “The Race Across the Sky”. For those unfamiliar with LT100, it is a 100 mile race held annually that was first held in 1983. This would be the 33rd running of this scenic out and back race that starts and finishes in downtown Leadville, Colorado.
During the race, runners cross through the heart of the Rocky Mountains. The highlight of the race is the climb up to Hope Pass at 12,620 feet above sea level which one gets to experience twice! Racers run unsupported the first 50 miles. Pacers are only allowed on the second half of the race. Runners must complete the 100 miles in under 30 hours to be considered a finisher.
When describing the finishers, Abby Long of Life Time Fitness, the company that operates the race, once stated, “They look like death coming in.” The motto of the race says it all, it takes “Grit, Guts, and Determination”. Yet, runners and crews keep coming back year after year.
I now know why, or at least, why I want to come back and eventually run it. This race is about humanity. It’s about our relationship with our respective selves, with each other, and with the world around us – and sometimes the struggle between those.
That clarity started with another friend, Corky (@CorkyMillerSTL), jumping in and crewing at the last minute. Corky is an alumnus of this race. He has paced twice and ran once. He is also the person who got me into running. He would be the only person in our crew who had either paced or finished Leadville. Corky has done both. He’s a phenomenal runner and someone I adamantly admire – for his running and how he lives his life with deep integrity and commitment to family and friends.
By coincidence, we had scheduled to have breakfast on Wednesday, 3 days before the race and 1 day before I left for Leadville. I mentioned to him that I was headed to Leadville and leaving in 36 hours. I asked if he could share any advice. Within a few minutes, Corky had shifted from giving advice to deciding to cancel his weekend plans and head to the race with me. He would miss his anniversary (with his wife’s support) to help me and a person whom he has never met.
Corky was not alone in his commitment to the runners. Everything becomes about helping your runner cross the finish line. Sometimes that meant physically supporting him. It meant logistically support him, and other times it meant emotionally supporting him. There are effectively two avenues to support – aid stations and pacing. For the aid stations, every member of our crew, including Jeffrey’s mother-in-law who came over from Japan, was there to support him. We were prepared for whatever Jeffrey needed irrespective of whether he knew what it was that he needed. We swapped his camelbacks with fresh water, fuel, and salt pills as he came into each aid station, often without stopping. When Jeffrey arrived at Winfield Aid Station (mile 50), we removed his shoes and socks knowing that he crossed the river 7 miles earlier. These were quickly replaced.
Corky, John (Jeffrey’s business partner), and I all served as pacers. LT100 is unique in that it also allows pacers to carry their respective runner’s gear. So, we carried as much as possible whenever we were passing, such as headlamps, jackets, and fuel. The pacers are mule, cheerleader, drill sergeant, nutritionist, and time keeper. It is about thinking for your runner when he can not think beyond taking the next step.
As previously noted, being a pacer is about physical, logistical, and emotional support. This was most evident as a pacer. I had the chance to run 2 segments with Jeffrey as his pacer for a total of 24ish miles. The first section was 10.5 miles (mile 50 to 60.5) from Winfield to Twin Lakes. This is often considered the hardest segment of the race. This is the turnaround point and the start to climbing back up to 12,620 feet elevation at Hope Pass. This is a grit point. It’s either pull out of the race time or climb the damn mountain time. Jeffrey chose the latter.
This would be the farthest distance he had run. Managing his time up to Hope Pass and encouraging him to drink and fuel were my top priorities; however, it could not take a backseat to the awe in front of us – both the world below us and his commitment. At the top, runners are pleasantly greeted by a woman wrapped in warm coats as the temperature had dropped to below 40F. She was accompanied by a small generator, a Chronotracker, smiling words of encouragement for all, and an amazing view. It was hard to see the beauty come into view with every step. I felt part of my job as cheerleader was to ensure Jeffrey did not miss out.
From the top, we descended 800 feet to one of my favorite points – Hopeless Aid Station. How do you get water and supplies to 11,800 feet? Llamas, of course. Water is pulled from a stream, packed onto the llamas, and purified up at Hopeless. After the haul up to Hope, Jeffrey needed some time to recoup and fuel. It’s hard to do these while climbing; however, he came into Hopeless looking better than he did at Winfield. He was rehydrated and smiling. Back down from Hopeless and into Twin Lakes, we went.
Corky took the next segment from Twin Lakes to Outward Bound (fka Fish Hatchery) which totaled 16.5 miles. He pinned the needle with Jeffrey at times and helped reduce his time. Puking aside, this gave leeway in time for John and me to tackle the next two segments, including John and Corky climbing Powerline. John returned Jeffrey in great spirits and added even more time; however, he was spent.
We now had a little more than 13.5 miles to go of LT100. We had predicted this segment would take approximately 4 hours. If so, this would give Jeffrey 20 minutes to spare from the 30 hour cutoff. The first 3-4 miles, it was a combination shuffle and walk with an average pace in the mid-18s. My gut feel was that there was more left in his tank and that the sun rising would energize him. This was about supporting him. Frankly, at this point, I lied to Jeffrey about his pace and numerous facts. For example, I claimed he would have not finish on time if he didn’t pick up the pace. He would have finished with 10 minutes to spare based upon the mid-18s. When he asked for an energy gel to eat down the road, I “accidentally” opened it before handing it to him.
He picked up the pace after that a little bit. Something clicked at mile 5 though, and we were off to the races.
Jeffrey became a damn machine. We started passing runners and their pacers in handfuls. At one point, a pacer and runner started running with us. Jeffrey was in lead, and I was behind him. This pair was behind me with their pacer screaming words of encouragement. “We are a g*d damn freight train. CHOOO-CHOOO!! Roll on, mother f*ckers!” Leading this pack did something for Jeffrey, and he dropped the hammer.
I looked down at our pace. We were sub-10 min/miles. We clocked miles 95 & 96 at around 8:43 min/miles. We were flying and had already dropped the runners trailing us. As we ran past more people, I distinctly remember a female runner asking her pacer, “How the hell are they doing that?”
With less than four miles to the finish, I had to call our crew. We were coming in well ahead of time, but I didn’t know how much ahead. Unfortunately, I caught them at breakfast. They hadn’t received all of their food yet. Regardless, it’s about the runner. Food was abandoned, check was paid, and they were out the door to be there. He had completed the final segment in 2 hours 51 minutes 38 seconds (2:51:38). He slaughtered the expectation of 4 hours.
finished with a time of 28 hours, 27 minutes, 19 seconds (28:27:19) to claim his first Leadville Trail 100 Finish with his wife by his side. This was her race, too, after a year of supporting and nourishing him.(Endurance sports are a selfish sport. Period. No discussion.) His crew was there to cheer him on.
Yet, we were not anything special in our commitment. (We did have the best driver, though.) Every crew operated in the same manner with their runners. And it extends past the crews. Like many, including the elites who had finished the previous day and most of the town, we waited around to see the remaining runners cross the finish line over the next 1.5 hours. Jeffrey finished 162 of 313 finishers. Another 161 runners would cross the finish line before the shotgun blast signaling the 30 hours cut off. This includes Rui Pedras, whom I have never met.
Rui came in at 29:46:56 for spot 307. What amazed me about his run was the last 150 yards. Every single step of the last 150 yards was heartbreaking. He could barely maintain keeping himself upright. It required the use of hiking poles that were splayed out at 90 degrees from each other. His legs would cross as he took steps. He looked like a first-time skier. Mental and physical exhaustion had pushed him to the brink.
The crowd was there every second cheering and encouraging a person whom they don’t know. He surged on their volume and words. It may have taken him nearly 20 minutes to cover the 150 yards, but he made it.
There’s something about seeing someone struggle, never giving up, and gritting down. There’s something about seeing strangers cheer and energize the spirit of someone they have never met and will probably never see again. It’s the commitment of one’s self, the crew’s to the runner, and the town to this race and its human endeavor against and with nature. It is the “Grit, Guts, and Determination” of all on display with humility and pride.
That is the essence and the spirit of Leadville – the race and the town. And that is why I will return.
I previously stated that it was an opportunity to be involved. The reality is that it was more than that. It was a gift and blessing. LT100 has the potential to be life-changing if one lets it. For me, it was that, and that is not a phrase I use casually.
For more information about the race and this year’s results, check out the following: