“We suffer not because there is no joy in our life; we suffer because there is joy all around us that we fail to notice.” Elana Miller, MD Zen Psychiatry
There was joy all around PJ and I this day that we witnessed, absorbed, cherished and celebrated without fail or suffering.
It wasn’t an easy decision to step up to the starting line with PJ wondering if either one of us had the stamina to complete the 140.6 mile Ironman endurance event. I had been going back and forth about the idea of attempting an Ironman distance while pulling PJ in a raft for the swim, a trailer on the bike and pushing him in a jogging stroller on the run. He has done several Sprint and Olympic distance events with Athletes in Tandem but this was a big step up.
Athletes in Tandem (AiT) is a non profit I started to give athletes with disabilities the opportunity to experience racing in individual swimming, cycling and running events and triathlons. Our vision is to enhance and develop confidence, individualism, self esteem and the quality of life for individuals through inclusion in outdoor recreational activities. We set one of our goals to be a recognized leader in the promotion of awareness that people with a disability benefit from an active lifestyle.
Questions arose for me that weighed heavily on the significance to the mission, values and goals of Athletes in Tandem. First, what if we start and didn’t finish. What was important…getting to the starting line or finishing? Second, who would be the best candidate with the most stamina to attempt the event? Was I putting this person in a position of being uncomfortable for a long period of time? Third, the race had to be something the athlete I would partner with wanted to do and not for my own sense of accomplishment. And lastly, why were we doing this? What would my athlete partner gain from the experience especially if they are non verbal and couldn’t communicate?
My friend, Dave Sheanin, and I talked over emails about what was important and what the possible benefits would be to the athlete who competed. Dave had also broached the idea of racing in tandem at Boulder IM but with a new job he did not feel like he would be able to get in the necessary training. He has partnered with athletes at Olympic distance tris with AiT before and enjoys the sharing of his passion for triathlon and of giving that is central to the mission. We concluded that finishing would have the most value and meaning but not at the detriment of the athlete.
Having raced with many individuals from 5k’s to marathons and sprint and Olympic distance tris I had a good idea of potential partners but the list was short. Health issues and parents level of comfort with the length of the race narrowed the list. PJ Snyder emerged as the best possibility. PJ is a 28 year old man with Angelman syndrome, a neuro-genic disorder that occurs in one in 15,000 live births. Angelman syndrome is often misdiagnosed as cerebral palsy or autism. Characteristics of the disorder include developmental delay, lack of speech, seizures, walking and balance disorders and individuals can demonstrate a happy demeanor – frequent laughing, smiling and excitability. Individuals with Angelman syndrome will require life-long care.
PJ has susceptibility to seizures when overheating so we needed to address this concern for an Ironman in the middle of a Colorado summer. His mother, Cindy, mentioned that she had a mister that she uses to help keep him cool and I imagined it hanging inside our bike trailer moisturizing him throughout the 112 mile ride and needing constant refills. I found cooling vests available online that professional athletes were using and thought this the best strategy. The cooling effect of the vests were advertised to last several hours and could be easily recharged by dipping them in cold water for a minute or two and then wringing out the excess water before putting them on again.
Determining if racing an Ironman meant something or was even desired by PJ was certainly the most difficult for me to assess since he is non verbal. For the most part, I had to trust Cindy’s judgment of her years of raising and nurturing PJ and witnessing him at our previous events. On most race mornings she would exclaim how excited he was and how much he loved the water. PJ’s demeanor did not always show the frequent laughing, smiling and excitability of a person with Angelman syndrome like I have seen in some others. But I had to assume he enjoyed racing since he kept coming back for more.
The why was not clear even up to race morning as the two weeks leading up to the race I contemplated going it alone for fear of not making the bike cut off and failing to reach the goal of finishing. I knew I had to average 13 mph on the bike to make the 5:30 pm cut off. After a 105 mile training ride of the bike course without pulling PJ in the trailer, I laid out what I believed were conservative time estimates to reach each aid station with the course terrain in mind. The X factor was the potential wind on race day as it could create even more drag with the trailer catching leg busting counter forces derailing the entire reason for racing in tandem…which was still not completely known to me. If strong winds were forecasted I was prepared to pull the plug and race solo.
On race morning the conditions were perfect and the forecast favorable to Athletes in Tandem attempting and achieving our goal. PJ and I finished the Boulder Ironman in 15:32:26 making the bike cut off with time to spare.
I didn’t realize it at the time but the “why” started to show itself way before race day with friends stepping forward to help out. Jen Houska offered to act as Captain for aid station #3 on the bike course with volunteers from The Northern Colorado Triathlon Club, the CSU Tri Club and friends of Athletes in Tandem. Their time at the aid station would secure a contribution from the Ironman Foundation of a shared grant benefiting both Athletes in Tandem and the CSU Tri Club. My friend, Patrick Ray, who operates PR Tri Works offered to spend the day helping with transportation, transition transfers, and bike maintenance during the race. Chris Howard of Sport About in Fort Collins extended his offer of “whatever you need I’m there for you.” Another friend, Blake McGrew, asked if there was anything he could do and then upon having nothing for him to do shows up on the bike course to cheer us on. I look back now after the race and see the why meant as much to others as it did to myself, PJ and Cindy.
I actually saw the why race morning when Patrick and I met up with PJ and Cindy at the Boulder Reservoir before the sun rose. PJ was bouncing up and down in his wheelchair with an excited smile on his face. Somebody had tapered properly and was ready to let the horse out of the stall.
I also saw the why while walking to the swim start area. I ran into friends who I knew were racing and exchanged best wishes. I saw Facebook friends who I hadn’t met in person before and introduced ourselves to one another for the first time. At the swim start the other physically challenged athletes offered up their best wishes for us and I returned the gesture.
After the swim, Patrick stripped my wetsuit and gathered the raft while Cindy prepared PJ for the bike. After changing into my bike gear I ran into Dave Sheanin who was working the sunscreen station and instinctively gave him a hug before he lathered me up. I know that sounds nasty but I’m leaving it in here. You’ll have to deal with it. Why Dave you ask? Inspirational, caring, generous, knowledgeable and there when you need him.
More whys in the form of friends on the course who have contributed to Athletes in Tandem in one way or another. Out on the bike Brian Boyes, who raced with PJ at Boulder Peak this year, strolled by early in the bike and called us out by name with encouraging words. Then Dean Davis rode up to us and asked if we needed anything. Even though he was racing he took some time out to visit and chat a bit before pedaling on. Bubbly (she’s like champagne) Kristina Jensen asked how PJ was doing and after I answered that I had not really been checking on him and kind of forgot he was there I felt bad. But then I humored myself and rationalized, “Hey, everybody has to pull their own weight in this race!”
There were so many special moments throughout the day on that 112 mile bike ride that were emotional and memorable. We were the recipients of many congratulatory “Well done men”, “Good work”, “Vamanos”, “Atta boys”, “Go PJ and Dennis!”, “You inspire me” “Will you pull me too?”
Out on Hwy 66 I spoke with a camera man and his motorcycle driver as they filmed that showed up later on the official Ironman Boulder video. Countless others throughout the day on the bike gave us a thumbs up or said something gracious and kind which continually put a smile on my face.
At mile 44 we stopped at aid #3 where my NoCo Tri Club friends were volunteering and I felt so happy and grateful to see them there supporting the event. I gave Jen Houska a big hug and hoped she felt the sincerity of my appreciation for not just organizing the aid station but her ongoing support of AiT. Patrick took care of my needs and wouldn’t let me do anything for myself. “What do you need?” “I’ll get it!” “You stay here.” “How’s the bike riding?” PJ and I put on our cooling vests and Cindy gave him new water and food bottles. One of the cyclists who had passed us just earlier circled back to the aid station to express his admiration for what we were doing. I couldn’t believe he did that and said I was impressed with him! Another why we were doing this moment.
Coming in to T2 Patrick said to me, “You’re a rock star!” The day was just getting better and better adding to the why.
Like other people and organizations associated with individuals with disabilities the Angelman community is a tight knit, loving and supportive group constantly active in raising awareness and money to find a cure. It became apparent throughout the day that another reason why we were racing the Ironman was for the Angels and the families of Angels.
Deanna McCurdy, another Facebook friend who has a daughter Haley with Angelman syndrome and whom I met for the first time at Athlete Check In was also competing. She had dedicated her training and racing to Haley and raised over $15,000 for the Angelman Syndrome Foundation. Coming all the way from Georgia she completed her first Ironman with her family watching and cheering her on. After she finished and along with another Angel parent, Susan Hogarth, they all cheered PJ and I along the run course and met us at the finish along with hundreds of others celebrating each individual finisher.
Twice out on the run course I heard spectators say after we passed, “That’s the guy I was telling you about!” Which causes me still to giggle in a sort of an amused embarrassment. It’s funny to me because I shy away from attention and yet here I was doing something that was a bit out of the ordinary. But one has to put themselves in uncomfortable situations to learn how to be comfortable in them. And since I was behind PJ in the jogging stroller I could just point to him. He would never know.
The final why came after we crossed the finish line when the community of athletes, volunteers and spectators welcomed the Snyder family into the world of Ironman finisher and the sport of triathlon.
Brene Brown talked about the power of vulnerability on a Ted Talk in 2010 that was based on her research that connection gives purpose and meaning to our lives. The ability to feel connected is biologically how we are wired she said. And what keeps us out of connection is the fear that we are not worthy of connection. Those who have a sense of worthiness have a strong sense of love and belonging and believe they are worthy of love and belonging. She called them wholehearted.
Common in her research with those that she saw worthiness were people who were whole hearted living in a deep sense of worthiness. What people have in common who are whole hearted is being able to tell the story of who they are with their whole heart or have the courage to be imperfect. They have compassion to be kind to themselves first and then to others. They have connection and are willing to let go of who they thought they should be in order to be who they are which you have to have in order to have connection. They also fully embraced vulnerability and believed that what made them vulnerable made them beautiful.
PJ and Cindy both, in my mind, let themselves be seen and worthy of a connection by starting and finishing the Ironman and hopefully this brought additional purpose and meaning to their lives. It did mine.
On Facebook PJ wrote: “Little did I know where this message back in Nov. 2011 would lead to. You ROCK Dennis Vanderheiden:
I’ve never met you but we are friends on Facebook. I run a program called Athletes in Tandem here in Fort Collins, CO. I would love to race with you in an event someday. I could even come down to the Denver area if that would be easier on you and your family. Could I propose some upcoming races to do together and then you could decide if that would be something you would like to do? If winter is not the best time we could always look at events in the spring. Hope to hear from you soon! Dennis – Athletes in Tandem”