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#Paris2024...What???

Updated: Nov 16, 2021

How does an obese, out of shape, Congressional candidate living with ALS even think about becoming an elite hand cycler with aspirations of making the United States Paralympic hand cycling team for the 2024 Paralympics in Paris? For me, changing my course was a step by step process, as if I was walking briskly with a flashlight in the pitch dark only seeing a few feet ahead of me at a time. During that process, I experienced a bit of a reality check, a rebalancing of my priorities, and a whole lot of inspiration until the sun rose and lit the rest of my path.





Roads are fascinating. Yes, they're certainly functional surfaces that get us from one destination to another. If we're not careful though, we can take them for granted and allow the mundane practicality and predictability of them to mask the endless possibilities they provide.


Besides the mere transportation benefits, for what other purposes can we use roads? Obviously, leisure and travel give us access to nature and the world around us. Whether by happenstance or on purpose, roads can show us the most gratifying sunsets and sunrises. Have you ever zoned out in deep thought, almost like meditation, while on a long drive along an open road? What about seeing the most random occurrences, like the words "Just Married" advertised on another vehicle? As a kid, before the days of smartphones, I remember playing games like "I spy with my little eye..." and making honking gestures out the windows hoping to get a long-haul truck driver to respond with the sound of their loud horn. I often miss living in Hawaii and driving on the freeway or along the North Shore pleasantly surprised with the most beautiful rainbows. Roads are for pretty much everyone and a lot can happen on them.


When I was able-bodied, I ran countless miles, usually between 80 and 100 miles per week, on roads all over the United States and even internationally. While I found dirt trails more aesthetically pleasing, I ran on paved roads for my faster training sessions, often neglecting the beauty along the way. Sometimes, we don't fully appreciate the mundane things, like roads, until they're gone or not accessible to us anymore. That was the case with me and roads as I entered my mid-30s.


After I was diagnosed with ALS in 2017, I always told myself I would give anything (within moral reasoning) to feel the wind in my face, the sweat drip from my body, my heart beat out of my chest, and the yin and yang of pure adrenaline pumped in and out of my body during intense workouts. Alas, ALS cut those days shorter than anticipated- much shorter.


But, over the course of the past year or so, I've experienced some miraculous changes in my ALS. Admittedly, I was a stubborn case from the very beginning of my disease, at times, at the disapproval of my wife and loved ones. I've always insisted on caring for myself and doing as much as I thought possible to remain relevant in society. Living like that with ALS sometimes involved taking risks, but those were risks I was willing to take to maintain some degree of power and control in my life. Those basic abilities, no matter how small or unimpressive they may have seemed at the time, gave me specks of hope that I could beat ALS, or die trying. So, since 2017, I grappled with the tasks and activities I thought were possible for me. But what about the impossible stuff? What about the things I desperately wanted to experience but brushed aside because I accepted they weren't attainable?


When I realized I wasn't content with clinging solely to easily attainable pursuits, I changed the direction in which I was traveling quite drastically. At the time, I was spending the majority of my time in bed or a motorized wheelchair, and, although I was productive doing important things, I came to understand that they weren't the best things for me at the time. At the beginning of 2021, I was five foot 6 and just shy of 200 pounds, and I was on pace to die of heart disease or diabetes before ALS. Something had to change.


I started trying very small activities, and, slowly but surely, little by little, I achieved life-changing milestones. I began the long and unpleasant process of weaning myself off of the ventilator, on which I relied nearly every hour of the day. I started sitting up more and disconnecting from the ventilator for minutes at a time, and, eventually hours at a time. I began working, really working, on my speech until I could speak using my natural voice again. I started getting out of bed and shuffling around the house more often. I forced myself out of bed and the wheelchair and started sitting on regular chairs doing puzzles and eating dinner with my family. In time, I began doing the dishes and other household chores. Recently, with the help of my family, I cleaned my garage for the first time in many years!


These simple functional improvements, which I'd thought to be impossible weeks and months earlier, gave me hope that I could still take some of my life back. To be fair, my will and grit aren't the only factors involved in my rehabilitation. I changed my diet and eventually sought professional help in physical therapy, chiropractic, massage, and even LED LightStim therapies, which I feel have all helped me immensely. I'm convinced that God rewarded me for my faith. He saw that I took the initial steps to change and blessed me tenfold. Now, I'm speaking with my natural voice and I don't use my power wheelchair as often. I spend the majority of my time off of the ventilator and I'm discussing the option of getting my tracheostomy reversed (a process called decannulation) with my medical team. I'm returning to full-time employment, and, I've taken up a new hobby- hand cycling- things I would have thought impossible a year ago.


How does an obese, out-of-shape, Congressional candidate living with ALS even think about becoming an elite hand cycler with aspirations of making the United States Paralympic hand cycling team for the 2024 Paralympics in Paris? For me, changing my course was a step-by-step process, as if I was walking briskly with a flashlight in the pitch dark only seeing a few feet ahead of me at a time. During that process, I experienced a bit of a reality check, a rebalancing of my priorities, and a whole lot of inspiration until the sun rose and lit the rest of my path.


The Reality Check

Confronting my dispassionate reality set the stage for reevaluating my life, which paved the way for me to experiment in defying seemingly impossible activities like weaning myself off the ventilator and pursuing hand cycling.

Like many people during 2020, I grew increasingly concerned about the direction our country was heading. I wanted to make a difference and be a positive political force for good. I prayed and contemplated how I could make a difference. At the time, I was still living a sedentary life and I was using a speech generating device to speak.


After months of thinking about it and taking political courses, I settled on running for United States Congress. Although my political career lasted only 3-months (long story outside the scope of this posting), I benefited greatly from the experience. Challenging myself in a new field placed many opportunities for growth in my path. I reevaluated and clarified my values and mission statement. I experienced moments where I had to reflect deeply about how I would stay true to my values despite great pressure and expectations from stakeholders and constituents. Just as I did during my mission for The Church of Jesus Christ of Latter-day Saints, I spoke with hundreds of people I had never met and listened to their concerns with empathy and compassion. And, as I did on my mission, I experienced what it was like to stand firm to my values, despite being rejected and ridiculed by others. Finally, the demands of campaigning pushed me to learn how to speak unassisted despite my tracheostomy.


So, what brought about my reality check? Well, in short, I realized that I didn't want to live the life of a politician whose job is to deflect blame and make others out to be the bad guys, all while constantly asking loyalists for money. In short order, I grew unhappy and dispassionate about what I was doing, and I realized that I couldn't be the representative I felt my constituents wanted while staying true to my values.


I still haven't told you the specific reality I confronted. It really had nothing to do with politics; rather, it had everything to do with being able to sleep at night knowing I was spending my time passionately on worthwhile pursuits. I was traveling unhappily on a dead-end road and I realized the path I was on would likely make me a worse person. In my mind, that was unacceptable. Confronting my dispassionate reality set the stage for reevaluating my life, which paved the way for me to experiment in defying seemingly impossible things like weaning myself off the ventilator and pursuing hand cycling.


Rebalancing My Priorities

When I announced my political campaign, numerous family members and friends reached out to me and expressed concern about how running for office could affect my family and my health. I completely understood their concerns; after all, I had six children under the age of 15 and I was living with a progressive terminal disease. Moreover, to my knowledge, no one with ALS had ever run for federal office in the United States. Those factors combined would cause anyone with any sense to step back and consider the consequences of putting family and church on the back burner.


I must confess, running for Congress with young children was hard, even for just the few months I was campaigning. After I decided to withdrawal from the race, I recognized I needed to realign my family relationships and church responsibilities before I made concrete decisions about my next steps. Being a more present father in my home was the initial motivation for me to test my limits to wean myself from the ventilator and spend more time with the family off of the ventilator. In my mind, I owed my family my attention and focus after the sacrifice they were willing to make as they supported me in my campaign. I had no idea acting on that instinct would result in me regaining my license to drive, among other things, thereby enhancing my presence as a husband and father.


A Whole Lot of Inspiration

Although I decided to end my campaign in August 2021, I didn't make the announcement officially until September. I've always felt that making decisions and carrying out those decisions are two different things. I've learned, sometimes the hard way, that a plan for important decisions without contingencies can result in disappointment, and making decisions without a plan for how to manage the consequences can be catastrophic. Full disclosure- I was terrified at the consequences of dropping out of the race. What would my friends, family, and supporters say and how would they react, particularly those who believed in me and donated to my cause? While I was relieved to be done with the campaign, I was also experiencing a lot of sadness and thoughts of failure. I needed inspiration.


Fortunately, this was all happening during the 2020 Olympics and Paralympics, which were happening in 2021 because of the Covid-19 pandemic. Talk about inspiration! I felt like a young kid again, watching Michael Johnson wearing his golden spikes to become the first male to win the 200 meters and 400 meters (in world record and Olympic record fashion, respectively) at Atlanta's 1996 Olympic games. Watching the world's best athletes give their all representing their countries this past summer- after everything the world had been through in 2020- I was simply amazed over and over again.


As I watched the summer games, I couldn't help but think about my goal of becoming an Olympic runner and asking myself how my running goals became derailed. Then, as I watched the Paralympians fail and succeed, bold and daunting thoughts crept into my mind. Is there space for me, a person living with ALS, in Paralympic sports? Has anyone with ALS ever competed in the Paralympics? My research yielded one result, Nick Scandone, a gold medalist in sailing at the 2008 Paralympics in China! I thought, well, this is something that's been done before and while I might have challenges to work through, maybe I shouldn't discount myself.


I originally thought about doing Alpine Skiing since it didn't seem to require as much respiratory strength. But, after several days of research, I decided I didn't have sufficient access to the ski locations and I wasn't experienced with snow. I researched each adaptive sport as thoroughly as I could to determine which would be the best fit for me.


After discarding hand cycling immediately (I didn't think I had the respiratory capacity), I revisited it as an option. I read a clinical study showing that hand cycling may require less respiratory capacity than able-bodied cycling. I decided to purchase a tabletop hand cycle I could use at home and give it a try. Although I had to start easy, I immediately fell in love with it and realized it was something I could do. I started pedaling slowly for about 15 minutes at the lowest resistance setting. Within a couple of weeks, I was increasing the resistance and cycling for over half an hour. Within a month, my long rides were over an hour, and, while my left hand grip was weaker than my right, I felt myself getting stronger aerobically and in parts of my arms.





I can't describe the jubilation and excitement I've felt as I've begun to rebuild the aerobic capacity I thought was lost forever. I've felt the sweat drip from my skin again. I've tasted the salt on my lips again. And I've felt my heart beating strongly and fast again like when I was running hard workouts in the prime of my life. I'm testing my limits every day now, and I wake up excited to tackle each workout and each challenge as they come!


Putting It All Together

I'm going to end this post with the analogy I used at the beginning. Roads. In my short lifetime, I've traveled many roads, both literally and figuratively. Some have been seemingly straight, monotonous, and endless, while others have been curvy and hilly. At times, I've gotten a bit lost- sometimes purposefully and sometimes by accident. I've been on roads in harsh, unpleasant, and dusty conditions. But, I've also experienced the complete opposite, with incredible jaw dropping views and weather, wishing it would never end. Then, there are the roads that are familiar and others that I've never been on before. Still, at other times, I've chosen specific roads and decided I didn't like them and turned back around- like my campaign for Congress.


One of the best things about roads is that we can always turn back around or change our direction whenever we want. It's just a matter of making a decision, or a series of decisions, and following through with them. And that's how I changed from being a Congressional candidate to wanting to become a Paralympic hand cycler. I'm looking forward to traveling this road for a long time, particularly as I've found a healthy balance with my family, a new job, and my pursuit of a Paralympic medal!


Keep moving- Live. Love. Laugh, and I'll see you on the roads of life and sport!


Happy





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