by Scott Santarella, CEO, Global Lyme Alliance
I have always been intrigued by the endurance event concept and its connection to charity fundraising. More specifically, I have been a huge fan of Tough Mudder, which is surprising because I hate being dirty, especially hate being wet and muddy, and I abhor running.
So I am not sure what I was thinking when I decided to Captain the Global Lyme Alliance Tough Mudder Team. I certainly wasn’t expecting the impact it would have on me personally and I definitely did not predict the perspective it would give me about facing challenges and understanding, even if only slightly, what Lyme patients deal with every day and why we need to eradicate this disease.
The primary reason for my taking on the challenge of Tough Mudder was to support tens of thousands of patients who struggle each day with the insidiousness of Lyme disease, as well as to raise funds and public awareness of GLA’s efforts to eradicate Lyme. And, as an added bonus, it was the perfect excuse to get myself in shape.
So for three months, as Captain of Team GLA, I trained hard, proud of my own determination and initiative. But I was locked in an internal battle, too. At times I felt powerful. At times I felt weak. There were days when I questioned whether I had the capacity to take on this endurance challenge, and days when I envisioned myself crossing a finish line in triumph. There were also days when I didn’t think I could train for another minute. All thoughts and feelings I have heard Lyme patients share in their stories: being too weak to get out bed; today is a good day; today is a bad day; I can’t think straight because of my brain fog; my mind is working today; I feel achy and sore; today my body feels normal, and so on. The ying and yang of Lyme disease is endless. Probably the biggest injustice, in my mind, was I had a huge advantage as I could train for my challenge. With lyme disease patients, there’s no training or coaching, and in many cases there is no warning. Nothing can prepare one for Lyme disease and the battles one will face.
What I learned about participating in a Tough Mudder is that the muddy, twisting, hilly, wet, challenging, obstacle course tests people to their limits, just as having Lyme tests sufferers to their limits. And although I would be challenged for only a few hours, it was a tiny reflection of the challenge Lyme patients must deal with every day of their lives. The path from getting diagnosed and treated to long-standing remission can seem unbelievably long and winding. Doubts and fears that one will never be well again creep in—just as I worried I wouldn’t have the stamina to complete Tough Mudder. So like Lyme warriors do every day, I was was even more determined to test my strength, stamina and grit, if only for a few hours. A small symbolic gesture on my part to mark and publicize Lyme patients’ considerable suffering.
I was lucky. I ran with a team of people, all of whom watched out for one another, especially me as a 50+ year-old who was running, climbing, jumping, and sloshing about with 20 and 30 somethings. They constantly checked on me, made sure I was okay, and waited for me at each obstacle so I would not have to undergo that particularly grueling challenge alone. I was not the slowest, but I knew I was going to need their help all along the way. Unfortunately, for many Lyme patients, they don’t have a team to help them through the often mysterious stages of their journey and that saddened me. For many Lyme patients, they face their challenges all alone, which angers me. Yet, it also inspires me to work harder on their behalf.
Team GLA finished the race, in fact, the team, waited for me before crossing the finish line as I was bringing up the rear. They wanted all of us to cross the finish line together. It was a wonderful, touching moment and I was reminded that the team that is the essence of GLA—our staff, board, researchers, and donors, our patients and their caring families—we are all in this together. It is only through our collective efforts that we can achieve our goals. It is my hope that in achieving our goals we all cross the eradication of Lyme disease finish line together, some day very soon.