The world is on lockdown. The stock market is volatile. Unemployment has set multiple records and not in a good way. Politicians are acknowledging death. None of that might compare to the deprivation of human connection.
We are socially distancing from people we love… or even like. We yearn for human connections beyond those displayed on a 5.5″ screen. We want handshakes and hugs, not YAZ (yet another Zoom). We want to greet our neighbors with a smile rather than suspicion if they washed their hands or have honored social distancing.
In the last few weeks, we have experienced a range of emotions as a new level of uncertainty has crept into the world. These times are rightfully driving the overwhelming feelings of fear, uncertainty, doubt, and anxiety for many.
I feel gratitude – an insurmountable amount of gratitude more than any other emotion. And a nagging desire to express the gratitude coursing through my veins because the source is worthy and surprising.
I realize that my family is navigating this pandemic with minimal pain. That drives gratitude. An overwhelming 22 million are struggling with unemployment. Courtney and I are blessed to still be working. I am fortunate to have a job that allowed me to transition to WFH easily. Courtney has been alternating between WFH and the clinic, which does impose some risk. Our kids have found a balance with online learning, personal time, and family bonding. We are focused on what matters. Oh, and we are getting up to work out together every weekday.
Yet, I realize that my family is navigating this pandemic with near-maximum risk. That has driven even greater gratitude.
I live with an internal enemy relentless committed to attacking my body. I have grown to accept this intrinsic threat and what it means. Multiple sclerosis is the result of an overactive immune system that attacks the myelin sheathing around nerve connections. In plain and fun terms, it’s like having a badass military force that can defeat almost any foe. They are also really bored. So, they attack a subset of those they are supposed to protect.
Many of us with MS and other conditions are on disease-modifying therapies (DMTs). In the case of my DMTs, my immune system is suppressed. It creates truckloads of risks and consequences. I have a minimally viable immune system and get sick easier than most. People with MS commit suicide at twice the rate of the population.
It also means those with MS are one of the most vulnerable during this pandemic – a virus that attacks the body and social isolation that attacks the mind.
I am watching a society sacrifice to help all of us, especially the most vulnerable. Nurses, nurse practitioners, PAs, MAs, doctors, and many other healthcare professionals are risking exposure to assist those with COVID-19. The backbone of society continues to strive to maintain our way of life and create some level of normalcy – retail employees, grocers, truck drivers, teachers, and many others. They are doing this with kindness and concern for all of us.
Tammy, a pharmacy technician at my local Costco pharmacy, is an example of this commitment. She was deeply worried about my health and going out in public even to pick up prescriptions. So, she voluntarily offered to drop off my prescriptions at my house. This is not mail order. This is not a Costco service. This is one person wanting to help another as she was going to personally drive them to my house during her time off.
And in all of that, I feel gratitude over fear, doubt, anxiety, or any negativity. When the best of humanity is in action to help one another, how could I not?
(NOTE: This was one of the most difficult posts to draft. These sacrifices are causing pain and struggle for many. That cannot be taken for granted.)
“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 started drafting this blog post on the Monday following the Leadville Trail 100 Race. I felt I owed it to myself and everyone who supported me. Thankfully, I did not finish the draft or publish it. It has taken until now (more than 2 weeks later) to come to the point of digesting all that happened.
“You’re broken down and tired
Of living life on a merry-go-round
And you can’t find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains”
Andra Day, “Rise Up”
For more the 18 months, I wrote in my 5-minute journal nearly every day. It ended with that day’s affirmation. The affirmation has concluded with “I will crush Leadville in X days” except on August 18, 2018. On that day, it ended with “I will crush Leadville today.”
The last two weeks have been detoxification. It’s physiological detoxification from coming off an adrenaline drip for 29:49:39. It’s emotional detoxification for achieving a goal that was created more than three years ago when committed to Jeffrey to pace him. It affirmed a place in my heart when I pulled into Leadville for the first time. It lodged itself into my marrow when I watched Rui Pedras cross the finish line in 2015 with 13 minutes to spare.
I have never met Rui. I probably never will. We live an ocean apart. Yet, I learned something about him as he fell from side to side on his trekking poles. He does not quit. He taught me that strength comes from the something primal in each of us. We have to want it. We have to drive it out with every molecule of oxygen exhaled. It does not care about elevation, fatigue, or circumstances.
I often thought about Rui and his finish during the race. It was a necessity because I felt broken after 2016. I had done the work. I had spent time and energy with some of the best trainers, runners, doctors, and therapists available. The list includes Jay Dicharry at Rebound Physical Therapy, Dr. Oliver and Jeremy Dunbarr at Bluetail Medical, Dr. Matthew Lytle at Precision Health, Jeff Huse at Athletes Unlimited, and Rob Krar at his ultrarunning camp weeks before the race. All of this had prepared me for the race. I could not fathom how much would test me and attempt to break me before the starting gun went off. I felt that I was faking it going into this race.
It’s important to put into perspective something Corky Miller, a friend and LT100 finisher, once said to me. “Leadville is harder than most 100-mile races. It finds a tiny chink in the armor and hammers down on it. Relentlessly and unapologetically.” I experienced this in 2016 with the torn hamstring.
Five weeks before the race, the wheels started falling off. I sprained my right ankle. It happened in the final quarter mile of the last run at Rob Krar Ultra Camp (RKUC). It was entirely my fault and occurred due to my excitement. That run was the finality of an incredible week that turned strangers into family. I was practically dancing downhill and took one misstep. I finished the run but knew something was wrong.
Dr. Lytle quickly rehabilitated me, but I was not sure it would be enough. It was days before the race when the ankle felt almost normal. By the start of the race, I was back to normal and never struggled from the sprain other than some rocked confidence. Unfortunately, I was not thinking about my ankle at the start of the race. It ended up being something worse that would plague the first 10 hours of the race.
I slept well the night before the race. When I awoke, everything seemed normal until some stomach cramping began. I incorrectly attribued the GI distress to nerves. It would rear itself multiple times during the race.
In 2016, I felt I did not belong in the race. It was entirely a self-confidence issue that led to a host of other issues during that race. I would not repeat that this time. I pushed my way to the front and crossed the line in a fraction of the previous time. My race started as planned. Things were smooth sailing as I completed the first five miles that took me out of town.
After the five miles leading out of town, the course has 7+ miles around Turquoise Lake that leads racers to May Queen, the first aid station. I love this section with its rolling hills and beautiful view of the lake. It embodies a feeling of familiarity since it reminds me of the trails here in Missouri. This is despite being the section where I suffered a torn hamstring in 2016. It’s also the section that I paced in 2015 and had my runner doing sub-9 minute miles to finish his race.
All was well until mile 8. The theory of pre-race jitters was replaced by the reality of food poisoning from the previous day’s lunch. It caused frequent stops. More important, it set off a chain reaction that significantly reduced my fuel consumption.
In most ultras, I plan to consume around 250-300 calories per hour. This amount is typical and safe for most runners despite burning up to 800 calories per hour. Consuming too few calories causes a runner to bonk and run out of energy. Consuming too many calories causes a runner to have cramps or worse. The blood rushes to the stomach to deal with the overabundance of food which induces nausea or worse.
I would consume a fraction of the typical amount thanks to the food poisoning. Over the 30 hours, I should have consumed around 7500-8000 calories. The estimate is that I took in approximately 3000 calories or about 100 calories per hour. That downward estimate does not factor in what I returned to the trail gods. Please do not ask what this explicitly means for the sake of the children. Search Google for “what happens when you get food poisoning?”.
My saving grace ended up being Hammer Nutrition Perpetuem. I had trained on this, and it was gentle enough that I could digest it without issues. Most of my calories came from Perpetuem. (Disclaimer: I am a Hammer Sponsored Athlete. I am not required to mention them. I tried this product because they sponsored me. If I had not, I am not sure if I would have finished.)
Two miles after the first GI issues, I ran into another problem. The lake and accompanying winds caused the temperatures to fluctuate. I am usually able to adapt to it; however, it was occurring too fast. The electrolyte and GI stresses made adapting difficult. Either from to the electrolyte imbalance or due to an appearance by my friend MS, I spent the next 2 minutes in unadulterated pain. My brain was smacked with waves of electrical shocks (aka brain zaps).
I had mentally prepared for this. I struggled with something similar years earlier at Clinton Lake Ultra. I had visualized how I would respond should this happen again. I had run this play in my head a hundred times. My thoughts cycled through three thoughts – my family, Rui, and gratitude that I am one of those with MS still able to run. Rinse. Repeat.
I came into May Queen at mile 13 in much better spirits than I expected despite multiple GI stops and the brain zaps. I did not show it. The crew would later tell me that I was different this year. I did not chat with them much. I was focused. Unfortunately, my state of focus visually represents itself as being an asshole. I decided to postpone a change of clothes. It was either my state or the need to chase cutoffs that caused my crew to rush me out of aid stations beginning with that one.
The miles from May Queen to Outward Bound were fun with minimal challenges to report except the ongoing GI issues. Hagerman Pass brought back smiles from 2016 when I was begging my wife to bring me painkillers so I could finish. I was aggressively cautious coming down Powerline after the sprained ankle from RKUC. As I watched another runner unsuccessfully test his ability to fly, I wondered if my sprained ankle was karma teaching me a lesson before the race.
The crew was able to turn me around at Outward Bound quickly. The next section is the one I hate more than any other. It’s a mile through the field of a ranch. It’s tedious and dangerous. The grass makes seeing the ground surface nearly impossible. It’s too easy to take a misstep and prematurely end the day with a twisted ankle or worse. This section also leads out to 2 miles on the road.
Road sections mentally slaughter me. I started running on trails because the road is boring. The emptiness of thoughts leaves my mind to contemplate my capabilities and count mileages. The defeating thoughts of my inner child (aka Fatty Matty) come alive. Also, I hate running next to cars most of which are piloted by mobile phone comatose drivers. Before heading to the next official aid station, I was able to connect with the crew and try to get down some real food.
I made it into Half Pipe with more than an hour before the cutoff. I burned a bunch of this time dealing with GI issues. This was the first time that I worried if I would need to drop from it. I could only run for a short period before getting sick again. I spent an excessive amount of time here hoping to settle my stomach. That investment in time led to a near race ending misstep. I left with a nearly empty hydration vest.
Three miles out of Half Pipe with more than 5 miles to go, my hydration vest was bone dry. I did not have enough time to return to Half Pipe. I decided to push forward despite the rising temperatures. This risky decision was stupid and forced a lesson in personal growth.
I hate asking people for help. It was a struggle to ask people to support the fundraiser. This deficiency can come across as egotistical or a sense of being better than others. The reality is drastically different. I never want the other to think or feel my friendship, love, affection, etc. come with strings attached. I still have never asked my crew to help me with Leadville. I can only hope I make up for this with gratitude towards them.
I broke down and asked a stranger for any extra fluid. A racer named Scott had the same hydration vest as mine, and he left with the back hydration container plus two frontloading bottles. He was able to share one of the frontloaded bottles. That provided enough water to get me through to an ad-hoc water-only station barely. I had forgotten about this station. To Scott, I owe you. You saved my race and my dream.
As I arrived at Twin Lakes, the GI issues had become less violent. I was still unable to consume the necessary calories per hour. With time to spare, I decided to change clothes and address a new issue – blisters. I have not had blisters in almost six years despite thousands of miles. The race had not hit the water crossings yet. Courtney attempted to treat them; however, it was too late. Calluses had already covered the blisters. (Have I ever mentioned how sexy and classy ultramarathoners are? No! Because we aren’t.)
Twin Lakes is where the race really begins. The previous forty miles were foreplay in pain and struggle. The rumor is that more people drop here than any other point in the race. It’s the climb up Hope Pass to the peak of 12,600 feet. Because this was not enough (and for supposed logistical ease), the course was changed in 2017. The change added miles to this section and increased the overall distance of the 100-mile race.
I struggled with this section in 2016 and needed to negative split the return. I was committed to not becoming a victim to it again. The lower water levels helped as I made my way across the field to the climb. My pace was excellent, and I was on my projected times to this point. As I climbed Hope Pass, I ran across its first victim. A runner was hobbling back down the mountain. He had broken his foot. He did not want aid and was in no mood to discuss the circumstances.
I arrived at the turn around point with time to spare. I picked up my first pacer, Jeffrey Stukuls. Jeffrey and I were the combo that negative split this section in 2016. We did not need to repeat that feat, but we also could not relax. The lack of calories began to limit my capabilities at this point.
My body was betraying me, and it was dragging my mind with it. I mentally and emotionally began to check out of the race. I was on the verge of praying for a DNF. I swore we had no chance of completing the race as other runners passed us. In 2016, I was passing people. The difference amplified my emotional state. As my pacer, Jeffrey was left to deal with the broken me.
We arrived back at Twin Lakes with eleven minutes before the cutoff. I needed to cross the chip sensor before 10:00 PM. It was a split decision whether to sit down and change shoes. The other option was to change them out on the trail after crossing the chip sensor. We opted for the former, and I chipped with less than seven minutes to spare.
The mere act of sitting and changing shoes revitalized me. I also picked up a new pacer, Corky. Corky knows LT100 better than anyone I know, and he knows this section better than any other section. It’s why he has paced me on this section both attempts. It’s also why we only lost 15 minutes from the trampled course marker that took us off course. Corky and I began to start passing people. We dealt with rain and sleet. I could not hold my core temperature and had to resort to wearing a jacket.
In the end, we picked up more than forty minutes before the next cutoff. That set the next pacer and me up for success on the section that killed my 2016 buckle.
My pacer changed to Noah Lander. Noah and I left Outward Bound headed for Powerline with plenty of time. I still was not wasting any time in aid stations to rest. Noah made me commit to something I had feared before now. He made me commit to saying, “I will finish Leadville this year.” When I would be on the verge of breaking, he would force me to say it. We started passing people again.
Powerline is measured by its false summits. The true summit is a sight to be seen thanks to its unofficial aid station. It is informally referred to as Space Station. The name is apropos given the volunteer students and Colorado’s liberal laws. It was also a welcome sight for this runner. I had taste fatigue. The hope was that a change of good would help me to keep the food down. I had not done such in nearly 10 miles.
Noah grabbed some potato chips. It was a successful plan for about 10 minutes. The potato chips returned to the trail. I went nearly dead on the inside. It was in this moment that Noah said something that clicked. “Shut your brain off. Zombie run this in.”
I am not sure why those words resonated. Maybe it was the permission to shut down my brain. Perhaps it was the permission to only focus on the present moment and not worry about the future. Sometimes being a pacer is about knowing what to say at the right time. Noah nailed it, and I still don’t fully understand why that worked.
As I returned to May Queen, it hit me that this would be the first time I would leave May Queen headed towards the town. I did not get the chance to take those steps in 2016. Those steps would need to wait though as food poisoning schedule a meeting with me and a porta potty.
Jeffrey and I left with four hours to cover 12.5 miles. This distance was doable given my strength despite my fuel issues. We unknowingly began to slow down. In the first two hours, we covered less than five miles. We were completely unaware and still believed we were on pace to finish. We even passed another runner who asked why we were running (which was really fast walking) given the “abundance of time we have left.” Jeffrey got the slowest and worst of me on the trail.
I spared almost no expense with Leadville this year. One of the additions was the Garmin inReach Mini Satellite GPS. The device was uploading my GPS data every ten minutes. They could see that we were off pace and the finish was severely at risk. They made an executive decision to send Corky and Noah to meet up with us. If they had waited an additional ten minutes for the next GPS push, it would have been too late.
“My new year’s resolution, yeah
Is to choke out my illusions, yeah
And cut through the confusion, yeah
Oh, keep on digging deep, keep digging deep
Keep digging deep, keep digging”
Nothing More, “Don’t Stop”
Corky met up and began to get us back on pace. Even in my delirious state, I would see him calculating the pace and the remaining distance. He was running/shuffling by my side despite wearing corduroy pants. As we exited the woods around Turquoise Lake, I began to lean to the right. My right obliques and right hamstring turned off. I could not activate these muscles.
Corky took over at this point. We had five miles to go with a significant amount of uphill. This same section seemed so alive and optimistic twenty-nine hours ago. It was now demoralizing and transmuting into a dream killer. We moved along for what seemed like forever. At one point, we caught up with Matt Stevens, a crew member.
Matt is the brother of one of my closest friends, Josh. Matt resides in Colorado and had joined the crew to spend time with his brother. A man I barely knew had started at the finish line that morning. He ran the course in reverse to meet us. He did this to provide the exact distance we had to go – 1.9 miles.
It was at this time that Corky asked me if I wanted this – if I wanted to finish or not. I am still not entirely sure I answered the question.
His next statement was that I was no longer in charge. I had to promise to do what he said. If he said run, I ran as best as I could. If he said walk, I did that the best I could. It did not matter. It just mattered that I did what I was told from now until thirty hours.
The last (and first) mile of the race is on the streets of Leadville. It is a rolling hill with the finish line visible from the top. In 2015, I watched dreams die as the race finished with people visible from afar on the top of those rolling hills. It’s too easy to think the race is over when the finish is within sight. Corky is well aware of this phenomenon.
He pushed me to continue running when I could. The video shows me with my hand on his left shoulder. I could not walk straight anymore due to the lean. It did not help that my vision was starting to deteriorate. He was not pulling me. He was guiding me to run straight. He was pointing me to the finish.
For the first time, I truly believed I was going to finish. The point hit me when I saw Rob Krar and his wife Christina Bauer cheering me on. It’s something that will ring in my heart forever.
Everyone kept shouting how Courtney was waiting for me. With the volume of people and emotions, I could not find her. When I finally did, Corky hugged me one last time. We uttered words that will remain between us. Just know that I love that man more than words can ever express. His guidance in my life has and continues to have a profound impact on my mission, my family, and my future.
Corky sent me to Courtney. From there, the video says it all. We crossed the finish line together at 29:49:39. I had less than 10.5 minutes to spare. As our family mission statement says, I “maximized life and potential.” I also maximized my time.
Ultra running, like any endurance sport, is a selfish endeavor. It takes time away from family and friends. I have a slight excuse with my multiple sclerosis. Trail running for long distances has helped me adapt and deal with neurological stress and visual response challenges that commonly plague those with MS.
Courtney asked me on the plane ride home if I wished I had a picture of only me crossing the finish line. I could not imagine any finish other than the one I had. She has been my partner for 25 years. The day I crossed the finish line was the 25th anniversary of our first date.
The finish line was merely the closing of the first quarter century together. I want her by my side and running with me for as long as she will have me. I just hope my friends are by my side to make me a strong and good enough person for her.
Here is the crew that made this happen: (alphabetically by last name) Paul Bastean, Noah Lander, Jon Lauer, Craig McElroy, Corky Miller, Ryan Mortland, Misa Ono, Courtney Porter, Todd Rausch, Jay Steinback, Josh Stevens, Matt Stevens, Jeffrey Stukuls, Holly Turner, and Krister Ungerboeck (the dinosaur).
Finally, I want to thank everyone who followed along at home and for everyone who contributed to the Fundraiser. We raised almost $50k for Race to Erase MS. The mere fact that every mile was worth so much mattered in the darkest moments. Even zombies care.
When I posted “Oh, and I Have Multiple Sclerosis”, I had one hope – to share my story in an authentic and honest manner. I did not have any expectations other than a few people reading it. I did not know if I would receive any feedback or responses. Yet, I have been overwhelmed and blessed with responses of support. Many of them have been directly from friends and family. Some of them have come through those same people.
I can not thank everyone enough. The responses represent the best of humanity. They have been surprising, heartwarming, and, at times, heartbreaking. I have especially appreciated the thoughts of support for Courtney.
– Lil Jon (On every song)
Buried in the responses were a few questions. I wanted to share some responses and respond to some questions.
Question #1: What has surprised you most since the announcement?
Answer #1: I am surprised by the people I heard from and the stories they have shared. This includes a few people who I don’t personally know. I am reminded that we never know the burdens people carry and the stories they hold.
Question #2: Why don’t you raise money for MS (instead of CFF)?
Answer #2: I have always disliked the pictures of people holding big checks with amounts they have given to a charity. It has always seemed self-serving. The exception is if the picture will inspire someone else to write a bigger check.
I believe charity should be done because it’s the right thing to do. These should be selfless reasons. It is about helping others. The MS charities feel a little too close too home. It may sound weird, but it feels somewhat selfish because it could or will be helping myself.
For now, I remain committed to the Cystic Fibrosis Foundation as my primary charity. This may change one day. I occasionally ponder if this the right response.
Question #3: Is this related to you being gluten-free/celiac?
Answer #3: Who knows? Celiac and MS are both autoimmune diseases. Consuming gluten appears to increase my chances of a flare-up. Plus, who doesn’t love rice flour seasoned with a pound of sugar? Or beer made from sorghum?
Question #4: Did your MS have anything to do with the investment in Contegix and your departure from day-to-day there?
Answer #4: Wow, no. Absolutely no. I actually did not even mentally connect those 2 events until someone asked the question.
We took the investment in Contegix to further our mission and to push our commitment to our core values. Craig and I are committed to the Rapid Accelerated Growth of our talent (their personal development), our customers, and our stakeholders. We wanted to build and expand our Go Beyond philosophy. Our industry is ripe with companies that do not care about the customer. Contegix is something different, and I am incredibly proud of that. It’s why I remain a shareholder and am on our Board.
We could have continued as-is, but we found a partner who concurred with and supported this mission. It allowed an acceleration, and I see the benefits of this decision every day. Contegix has achieved FedRamp certification. We have continued to hire and grow our people. It’s truly a joy to see it.
As to my stepping away from day-to-day operations, I am drafting a blog post regarding this, but it had nothing to do with the MS. Many people have heard me talk about this topic – Know Your 100 Miles. I hope the piece helps other entrepreneurs, leaders, and founders do what they do best. In short, Contegix needed a CEO who could take on the next phase of our mission, and we have one. I have an opportunity to observe, guide, and lead from our Board.
Finally, I will call out the elephant in the room. While this post and the last one were about MS, this blog will not become focused on MS. It will be what it always has been – my random thoughts. Sometimes, that means MS. This blog will not be defined by MS just as I am not be defined by MS.
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.