Blog of Matthew Porter – Husband, Father, Entrepreneur, Geek, MS Warrior, and Ultramarathoner
I have read Simon Sinek’s book Start with Why: How Great Leaders Inspire Everyone to Take Action and watched his Ted Talk a dozen times. The heart of Sinek’s message is that purpose drives people in an organization. Organizations succeed by clearly defining their purpose and deeply aligning people to that purpose.
Despite the numerous mentions by Sinek around individuals with powerful Whys, I never truly turned this question inward myself. More importantly, I never considered and realized how my Why has evolved over time.
“I don’t want to drive 100 miles. Why would you run that far?”
The Initial Why
I started running on March 26, 2010. Running, especially on trails, was never in my life plan. The joke is that one doesn’t have to outrun a charging bear. One just has to outrun the friend with you. At that time, I was the friend for you. I would have rather futilely fought off the bear than even try to outrun him or you.
Running happened because of my daughter, who was 6 years old at the time. I was tucking her in for bed after a long day. For me, the long day was filled with building a startup, trying to be a good husband and father, and consuming a diet of sugar, caffeine, and cheap food. For her, it was reading and playing princess with mom, including another retelling of our wedding story.
As I tucked this sweet, innocent girl into bed, she hugged me and told me how much she loved me. She reflected back on the story of my wedding. With glee and a partially toothless smile, she then poked my stomach and told me, “You have a lot of squishy. I don’t know if you are going to make it [to my wedding].” Another hug, and off to dreamland she went.
I started running the next day. I had no idea where running would eventually take me. It needed to take me to her far-off in the future wedding. I was committed to turning my life around so I could be there if she wanted me to walk her down the aisle one day. This was my Why.
I ate healthier. I discovered trails and found part of my soul out there. I ran half marathons, then marathons. I started running distances longer than marathons for fun and discovered there were actually races at these distances. Despite the changes and feeling much better, something always felt off. Healthiness did not feel like what I thought it should feel like.
My Why would change exactly four years and six months later after that first run. On that day, my wife and I sat in a neurologist’s office, awaiting the official words. I was diagnosed with multiple sclerosis. The words would come. Before they did, the doctor would say he had no idea how I ran ultramarathons. He was somewhat surprised I was even able to walk without aids or challenges.
It became clear that running and exercise had saved both the quality of my life and my life. I hammered down on running and races even more. I wanted to prove I could beat MS and every story I heard about it. It was about me and getting to her potential wedding. I was still private about my diagnosis. I would be the exception and be exceptional at it.
In 2016, I attempted my first Leadville Trail 100. My crew was let in on the secret of my diagnosis. They watched in horror as I tore my right hamstring 8 miles into the race and continued to run. I would fall short of finishing after running 79 miles with the torn right hamstring. (Hammer Nutrition Tissue Rejuvenator would later be key to my recovery.)
Evolution Of The Why
I would come back in 2018 to finish the Leadville Trail 100 despite food poisoning and my body struggling. I would end up bent over and leaning to the right. I attribute the finish to my Why having evolved.
I became public about my diagnosis and the challenges in September 2017, on the third anniversary of my diagnosis. Finishing Leadville was no longer just about me. I had witnessed too many people struggle with their MS – not just physically but emotionally. It was about all of us with the challenges life throws our way. It was about trying to do the extraordinary even in the face of the ordinary being a struggle.
This became part of my Why. This became fuel to get me from Harrison Street over Hope Pass into Winfield and back for Merilee’s hug. I also used the race to raise awareness and money for MS research.
I asked friends and family to donate an amount per mile with the cheeky message, “If you like or love me, please consider pledging an amount per mile that will encourage me. If I ever pissed you off, consider pledging 5x as much to make me suffer.” We raised over $60k and made a dent in the universe. I think it mostly came from the love folks.
For those who don’t know, Missouri is The Show Me State. A friend who also has MS and I decided that we would create a new narrative of what MS looks like. We would show the world, but we knew it had to be more than our story. We would bring the story to Jefferson City, our state capital, a mere 103 miles from my home in the suburbs of Saint Louis. Thus, The Show Me 100 (https://showme100.ms) was born.
We would live our state’s motto and show our politicians what this disease looks like – the good, the bad, and the ugly. We would advocate for those unable to do such and raise money to get us further in curing MS.
On February 27, 2022, we launched from my home at 5 am. We had 103 miles straight down the Katy Trail to get to Jefferson City. We also had a Why big enough for this endeavor. This was evident in the family and friends who came out to help us. It was evident by my state senator and his wife running with us. Senator Bill Eigel stayed with us for a few miles while his wife, Amanda, paced us for more than 20 miles.
Despite every preparation, the run was a microcosm of living with MS. The situation and conditions were more treacherous and unpredictable than expected.
The weather leading up to the start left the trail conditions oscillating between ice and sludge. At mile 48, I tore my left calf. The tear would later be measured at 4 cm x 2 cm. The overnight temperatures dropped more than forecasted and significantly impacted us due to the slower pace from the torn calf. The other runner with MS suffered hypothermia.
Despite this, stopping the run, just like living with MS or any disease, was not an option. We had a goal to achieve and the Why to fuel us. Our Why had grown to represent those with MS and the supporters that donated $130k to our cause.
On February 28, 2022, we crossed our finish line in Jefferson City. We would spend the next 2 days in the Missouri State Capital advocating for those with MS. Politicians spent hours with us and asked how they could help.
It’s been more than 4 months since the run. Since then, I have heard from dozens of people with MS and other diseases. The message has been a consistent one of gratitude. They are grateful for moving the world forward in funding, awareness, and policy. More important, it is the gratitude for telling a different public story of those with MS. We are all fighting in this quiet, often hidden battle because our Whys matter – family, friends, and our fellow MS warriors.
But here’s the secret… it was love from and of everyone – Courtney, kids, family, friends, and all those with MS – that made these endeavors possible. That’s my Why.
Hammer Nutrition has with me every step of the way. When my stomach turned 10 miles at 2018 Leadville from food poisoning, my crew shifted me to a mostly Perpetuem diet. They alternated the flavors at every crewing point. It was a small bit of joy to discover what flavor I was getting. Surprisingly, mixing them tasted damn good too. By mile 60, Perpetuem was the only fuel I could hold down.
Perpetuem has remained the foundation of my training and race fuel since then. It was the nutritional basis of the Show Me 100.
Oh, and Tissue Rejuvenator has been key to recovering and preparing me to tackle the next goal because I haven’t lost sight of my why.
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.)
In 2016, neuroscientists published a paper entitled, “Social Transfer of Pain In Mice” in Science Advances. The experiment tested pain experience and tolerance in three different groups of mice. The first group underwent controlled changes to have a more acute feeling of pain. The remaining two groups were unchanged.
Researchers then conducted a series of standard tests that allow the measurement of pain each felt. (The ethical merits of animal testing are not up for debate in this post.) Only a portion of the mice underwent anything causing pain. A controlled group of mice was left that neither underwent any changes nor had undergone tests causing pain.
The researchers were surprised to discover that a portion of the control group experienced pain. This only occurred with the control group mice that were roommates with those that experienced pain. To reiter, the mice under pain had effectively caused their roommates to experience pain. The authors theorize that the social transfer of pain occurred via smell.
The end result – Pain is contagious.
I can understand any skepticism around that conclusion and its relevance. Yet, how different are we as humans? Maybe, we transfer our pain, fear, and anxieties via smell. Maybe. I believe we might do it via more complicated manners, and those are not pretty in the long term for ourselves and others.
The transfer of pain does not merely exist in the lab or for mice. We have each experienced this in our personal lives. We can treat the ones we most cherish and love as our personal emotional punching bag almost irrespective of the topic.
We use words like “hangry” to describe an emotional state derived by a lack of fulfilling the lowest need in Maslov’s hierarchy.
We live in a world of road rage which fundamentally does not make sense. It effectively translates to – “I am pissed at someone cutting me off and putting me in danger. My response is to drastically and actively increase my risk and danger by being hostile to another car.” It’s an increase of our negative and pain while trying to spread it to another.
We have emotional bleed, and pain is contagious. So are anxiety and other negative emotions.
The world is scary right now. Life contains a level of uncertainty that many have not experienced since 2008 or perhaps 2001. An entire generation of adults, the Millenials, may only have faint whispers in their memories of there previous periods that have challenged us. I wrote about how the generations need each other more than ever, and that one of our greatest modern workplace challenges may be one of our greatest resources.
Pain can stem from the uncertainty in front of us. That is the danger zone. Are we really pissed at the person receiving our anger? Perhaps. At the level in which we are expressing it? Doubtful.
We have decisions to make in the midst of today’s chaos and increased emotion. Will we amplify the pain through ignorance? Will we amplify the pain through exaggeration? Will we amplify the pain, anxiety, and fear of others so we are in comparatively less pain to become the one-eyed man on the island of the blind. (The wild disbelief that pain is a zero-sum game.)
Another option is to lead our inner selves, our families, and our communities through this pain. Instead of doubling down on our infection, we can stop hurting ourselves and use this moment for personal growth. We can process the traumatic events in front of us and use it to come together with the love and cherish that unite us.
DISCLAIMER: I posted this and realized someone could think this is a passive-aggressive message to a person in particular. It is not. I am absolutely sure I have pissed people off and hurt people. I have relationships that could be healthier. I am human, and that statement is an explanation BUT not a reason or excuse. I have not heard from anyone, but if I did hurt you, I am truly sorry if I didn’t heed my own musings.
The modern workplace entered a new phase a few years ago. For the first time in history, we have five generations working together under the same roof:
Nearly half of the Millenials (Gen-Y) and all of Gen-Z have never experienced the current level of uncertainty in the world. The early half of the Millenials experienced the beginnings and aftermath of 2008 as they were already adults and part of the workforce. The latter half was approximately 21-22 years old when the financial crisis hit. Their adulthood was born at the bottom of the crisis. Gen-Z may only have faint whispers in their memories of the previous period that challenged us.
In late 2019, the meme “OK, boomer” was birthed into existence. It was brought into the Internet’s consciousness to dismiss and mock the attitudes and perspectives that some Millenials and Gen-Zers felt were held by the baby boomer generation. Yet, it may have been cast on the Boomers, but it was meant more as a statement to every previous generation.
The meme is an expected response from the Millenials. Previous generations have always complained about the following generations. As a Gen-Xer, I remember being cast with the stereotype of being a rebel slacker. We were expected to be unmanageable, lazy, and entitled. The Millenials are no exception as “the generation that’s fun to hate.” As a generation born of the Internet era, a meme to express their feelings was not only expected. It was the most Millenial response.
The back and forth between the generations may seem unfair. Maybe it is. It is also familiar and relatively normal. George Orwell summed it up. “Every generation imagines itself to be more intelligent than theone that went before it, and wiser than the one that comes after it.”
What does all of this have to do with today and the current world situation?
It’s time to think about how much these generations need each other right now. The Millenials and Gen-Z need the Boomers and Traditionalists to share their experiences dealing with crises that seem insurmountable and destabilizing of the normal. The Gen-Xers have been through one crisis in 2008, but most of us were barely more than young adults.
The Traditionalists and Boomers are the most vulnerable to the novel coronavirus. They need the younger generations to sacrifice, realize our responsibility, and take precautions.
Ok, Boomer. We need you, and you need us.
So, how does one end a week of posting about a life with multiple sclerosis? That’s the question I have been asking myself all week. To answer this, I thought back to why I stepped out to become public about my MS and why I posted this week.
Every person has some struggle that she/he is dealing with, or they will in the future. Those struggles often lead to questioning “Why me?” Those struggles often lead to pain which can be both debilitating and contagious.
For whatever reason, I am blessed to be engineered to want to fight this. The question was never, “Why me?” It was always, “Why not me? What makes me so special that I deserve a life free of pain, struggle, or challenges? OK, now how am I going to fight this – for me, my family, my friends, and my community?” That’s why I stepped out 2.5 years ago. That’s why I posted this week. My intent has been to show a more balanced view of what MS is for me (and others?). I was exhausted seeing only the negative side of MS. I hope I showed an honest point of view. Life is neither normal nor abnormal. It is not binary of easy or hard.
I hope I never came across as a victim because I have never viewed this in that manner. In many ways, my feelings are the exact opposite. MS has given me new context and perspective. It has given me an opportunity to help others.
It has instilled an internal fire to love every moment and the people in my life.
#ThisIsMS (Pic is from a rock pile where I first publicly stated I had MS. It’s written on a rock down there… somewhere amongst all the other secrets and proclamations.)
A few weeks ago, I fell while running. It was a nasty fall and worse than I thought. I didn’t fall on the hills. I fell on the flat. It could have been MS. It could have been a root. It could have been dumb luck.
After dealing with pain for 2 weeks, I decided to see my team over at @bluetailmedical. I have a torn right meniscus and have been running on it for weeks.
Yesterday, they did BMAC on the meniscus. This involves taking my blood and harvesting both fat and bone marrow. That is then injected in the site to rapidly repair it. I am expected to be back to half strength in one week and full strength within 2 weeks.
Falling is part of MS. Pain is part of MS. It matters more how I get up and accept a constantly changing new normal. Then, put one step in front of the other. Even if it’s a bit of a hobble.
Oh, make no doubt… Leadville 2020 is absolutely on!
Husband, father, volunteer, and CEO. These are a few of the roles that define me. My MS is not one of them. #ThisIsMS
I don’t want to give the impression that MS is easy for me or anyone. I am blessed & can deal with most of the challenges, including the pain. Sometimes, it rears its head in ways that impact me. But, it’s the commitment to keep fighting that matters most.
These pics are from when MS won a battle. My hand was when my brain turned off for a half second. I was on a treadmill running 5:20 pace. The others are from a fall a few weeks ago. I didn’t fall on the hills. It was a flat trail section.
In both situations and others, I got back up. Today and this moment are gifts. They are blessings. I might be in pain, but I choose to respect and love this moment. And I fight for the next second, the next minute, and the next day.
#ThisIsMS but this is me fighting!
Today was my 200th class at OrangeTheory Fitness. I started 16 months ago to supplement my running & personal trainer. It has forced me to run faster than I usually like. (AO – 11.5+) #ThisIsMS
As part of my treatment, I incur weekly injections. How funny? I once tore apart a treatment room at a doctor’s office when I was a kid because the nurse tried to give me a shot. Today, it’s just part of the process to fight MS. #ThisIsMS