“So how are you doing?”
That’s what everyone asks when they see me now since my 12 year old son, Max, passed away on May 15, 2013.
Max was born perfectly healthy but at 6 weeks of age, he mysteriously contracted bacterial meningitis. After 7 weeks at Vanderbilt Children’s, he came home with brain damage, epilepsy and many other handicaps. Despite his battles, and ours, in caretaking over the years, I refuse to think he had a bad life.
So how am I doing?
It is literally every parents worst nightmare. The death of their child. But somehow shockingly, the grass keeps growing, . . . and so do you. I can answer better in analogy and tale. So I will reference something others may be able to identify with since the loss of a child, a special needs child, is not an experience most parents have shared.
I used to participate in adventure races. These were races where you raced with a team of 4 (mine were co-ed) and they were always epic feats of endurance mentally, emotionally and physically. The photo above was taken on June 18, 2000. It was my 30th birthday. On this year, it landed on Father’s day. It was my first. Max was still a healthy child. A special day indeed. The photo shows the finish line with Chris and little Katie Stark. Jill and little Mitch Mersman. Me and Max.
My longest race was 4 days in length. In the beautiful wild, across lakes, rivers and streams, mountain biking and hiking up and down great elevations, horseback, whitewater, rappelling down 400 foot cliffs, canoes and kayaks, . . . carrying all your gear, sleep deprived, real-life hallucinations, injuries, unexpected problems, drama and decision making under stress, . . . they were the events I participated in that I was most proud of achieving. I loved being outdoors, loved the woods over the road. Loved trail running, loved mountain biking. It was like extreme camping combined with my love of movement. The 12 hour race became the motivator to sign up for the 24 hour race. Then the 24 hour race made you want to sign up for the 48 hour race and so on. You realized and tested capability. You could look back and be in awe of achievement, of what the human body can do.
At times, the course would be closed early and after all the work you did, you never even got to cross the finish line. Many of these races had only a handful of strangers at the finish line, and often, no medals of any kind were given. Such a feat, I thought, compared to a 5K that earns me a huge medal, . . . was always so puzzling to me, . . . so I had to understand why I raced in the first place. My teammates were great athletes. Each one with their own strengths and weaknesses. Admittedly, I was never known for any kind of speed. More so for my strength at the time. This meant I could be a mule with a good attitude, carrying other teammates’ gear if needed, and be appreciative when others had to sometimes wait for me. But overall, my greatest strength was that I would never quit. I would not lose the mental game. I would go the distance and never want anything but an honorable finish. But race participation ended for me soon after Max was born. Even having to pass on my racing career’s dream opportunity to be on an Eco Challenge Team in Fiji.
On May 15th, of this year, I came to another finish line. Still dazed, but I do remember a very peaceful, although extremely painful transition before I stopped running. I noticed the silence in everything. Felt the emptiness in everything solid. I heard the birds, I felt the hot sun on my left cheek, I hung onto my pack so tight, and I eventually dropped to my knees clutching it. I could not believe this race was over. I had more in me and I felt like I was forced to stop. Emotionally, I exploded. The unbelievable and inescapable finality. That moment. I did not want to stand up, knowing I’d have to put my pack down. Knowing that pack held everything I needed to survive in the race. The race was so long, I could not remember not having it and protecting it. I could not let go of it. I immediately knew it was my last race of its kind. But I had never once thought about that while racing. When you race long enough, you really don’t think about the finish line. When the race is long enough, you watch hypnotically every step you take while getting lost in thought and the view. It becomes difficult to talk to each other when you are running for days. Too tired to talk, knowing it would take too much energy. Even important conversations have to wait. It gets quieter on the course. What used to be an uncomfortable and painful day, is now just a day. You thought it was funny that people only talked about a “second” wind. You had literally no idea how you would get up over mountains, but you kept walking towards them knowing there was no other option but to climb. And even in these conditions, you could still see the beauty in the waterfalls, insects and blooms. I became as part of the woods as the trees themselves. I felt like the forest knew me so much better than the people we left outside of it up to this point. But my team had to stop. Nobody was a quitter, and the pain of watching our best racer struggle became our toughest decision on the course. We had to step out of the woods.
After Max’s memorial service on what would have been his 13th birthday, I felt like I had just finished my longest adventure race. Exhausted. I knew we didn't get anywhere near first place. But something inside made it hard for me to think we were last either. But there I was, with my friends and family at the finish congratulating me, supporting me, and yet, . . .I don't quite know how to rate my performance or comprehend all that just happened, . . . all I just did. I took a lot of notes through the race. I took a lot of pictures. Thankfully. I will have to go through these. I’ll have to revisit times I forgot about, some I cannot, and some maybe I shouldn’t.
For this kind of race, like many of your races, you alone have to judge, accept and be comfortable with your performance. For you to move past this, it comes down to this alone and the value you place on the experience.
But we had no coach to give us feedback. We had no coach to train with. No coach to prevent us from injury or avoidable pitfalls.
The people at the finish line only saw you race by at different checkpoints. They never saw all the amazing waterfalls you passed, the mountains you rappelled down, the beautiful sunsets you saw. They also never saw your flesh getting torn on the branches, your ankle twisting again and again, your knees buckling, your head gaming. They never felt what you felt. You even had crew meet you along the course that provided fresh water, some food and encouragement after every long stretch in the woods . . . but they could not provide you with a good nights sleep, they could not take your place in the race. All they could do is give you a chair to sit in for a few minutes. But the longer you sat, the more nervous you got. You needed to get back to the race. There were no substitutes allowed, it was a race that only we could run. We knew it would take so long to teach others how to navigate our course, and if they were not going to race with us every single day, it only made the race harder. The first aid stations had doctors and nurses, but they could only treat us, not fix us. And we knew we could not begin to heal until the race was over anyway. Despite these brief aid stations along the way, most of the race was spent in our small team or alone, deep in the woods, where cries for help wouldn’t even be heard. Sleep deprived, heavy loads, banged up, with a mind that was pushed to its limits. Having to make decisions we were not qualified to make, in the middle of the night, in freezing temperatures and in downpours as best we could.
But there you are, at the finish line. Your longest race you will ever run. But to you, it still feels a bit like you didn’t get to cross the line. Like you ran out of time. Pulled off the course. You are not getting a medal for this one.
You’d feel so much better if you just knew how your best racer felt about it all. He always had the best attitude on the entire course. You can’t help but long for it but it is feedback you will never have. Alone in judgment you are.
You have to reflect. You have to compose yourself, get rest and reflect. Your backpack is off. Finally. Days out you realize, “that feels good.” It was a lot heavier than you remember and on longer than you thought. You are banged up. You are bleeding. Body still needs to heal, although you know that some of your cuts will leave scars. The scars are the least of your worries. But while you limp, you also reflect upon the beauty of the course and what you just did. Emotions scramble, you need food, sleep and time. You have a little bit of awe in what you did, but you are still critically thinking about every move you made, bringing you to this point.
Like my other races, I will look back as time goes by and remember it with pride, recalling the best moments on the course. What an adventure it was. What a fantastic story it will be. Sharing bits and pieces that I have never shared before, repeating the epic breathtaking moments and passing them on, . . . before too many details start to fade.
So although my backpack is off, I know I have to still attend to my wounds. I was never expecting to come out of the woods clean and neat. And today, the “what-ifs” are fading, but I’m still a little sore, I still feel it when I walk. I still get emotional when I talk about the course. But if you want the truth to how I am doing, the honest answer would be: surprisingly stronger and more positive than I can remember. I have written down every reason why, but I will save those for a story later.
Because how lucky am I to survive it? To have lived it? To have participated 100% in the experience of it without rest? To have that opportunity and the love I could only find by racing with my son? With Max. My family. How lucky was I to be able to line up on the start line to begin with? How lucky are we all.
And before I finalize my thoughts on how I did in the race of my life, I had to also consider one more aspect. I went into the race with no training. A race that is thought of as being so hard that hardly anyone actually ever signs up for it. Yes, I did think the course was going to be different. But that’s my fault. And even though I didn’t purposefully sign up for this race, I participated fully, contributed honorably and I damn well finished it. I’m healing, . . . with mind strengthened from what the last race taught me. Objectively I must also concede, . . . it was my personal best for the course.
Honor is found in the race. Participate, contribute and finish yours.
See the love in what you do, and love what it does to you.