Why I Run

Katie Curnan

Guest post by Jesse Ruben
Musician, Captain of GLA NYC Marathon Team, Lyme disease patient

“I don’t think I’m going to make it.”

These are the words I whisper to my mom after I find her on the east side of 5th avenue, just past the marker for mile 23. I’ve got about three miles left. My legs are cramping up. I’m dehydrated. I can’t tell if I’m hungry or thirsty or just too exhausted to think. It’s early afternoon on November 3rd, 2019. This is my seventh time running the New York City Marathon, and it’s definitely the hardest. 

I have hit the dreaded “wall.”

I thought I’d run this race every year, forever. My first NYC Marathon was back in 2010. I was part of Team Reeve, the official race team for The Christopher and Dana Reeve Foundation. I ran to support my best friend, Zack, who had suffered a spinal cord injury when we were 18. I ran again in 2011, crossing the finish line with my twin sister. In 2012, when the marathon got cancelled because of Hurricane Sandy, I ran 26.2 miles in central park with 8 other people (including my future wife) while our friends cheered us on. It was magic. 

a survivor of lyme disease plays guitar and sings

Three months after my third marathon, my life should’ve been amazing. I was 26 years old and had just started dating my dream girl. My career as a singer/songwriter was starting to take off. But my health started to go downhill. I was tired all the time. I was frequently dizzy and nauseous. I had bad headaches. My short-term memory disappeared. I had a constant strange crawling sensation under my skin. I couldn’t walk up a flight of stairs without feeling completely out of breath. 

Ten months and 15 doctors later, I finally got my diagnosis: Lyme Disease. Over the next three years, my life was spent going back and forth between my doctor’s office on 31st street and my bed. I got worse, and then even worse. My family and friends didn’t always believe that there was something wrong with me. Doctors had told me I was depressed, that I needed to wake up early and take brisk walks. That I had a vitamin D deficiency. 

Meanwhile, I was worried I was going to die. 

After years of oral and IV antibiotics, herbs, tinctures, vitamins, and supplements, my doctor asked if I wanted to try an experimental treatment known as The Garcia Protocol. It’s a combination of chelation (a heavy metal detox IV) and ozone treatment. At that point, I was terrified that my sickness would never go away. That this was what my life would be like. 

So, I said yes.

I am one of the lucky ones. After one treatment, I knew I had found something special. I did The Garcia Protocol twice a week for three months, and virtually all of my symptoms were gone. I was cured. I was free. I was myself again. I was also angry and scared of how to re-enter the real world again, but I did know that I wanted to help other Lyme patients. 

In 2016, around the time I started to get better, I got involved with the Global Lyme Alliance. My first suggestion was to start an endurance program, so that people could raise money for Lyme disease research and participate in races. The thing about a marathon is that it allows you to take a part of your life that was challenging and upsetting and turn it into something positive. 

My wife has run the NYC marathon every year since 2012. She runs for Fred’s Team, which raises money for cancer research. She does it as a way to honor her sister, who passed away when she was 21. It is a way for her to feel connected to her sister, to help be a part of the solution, and to connect with a community of other runners who have experienced similar losses. 

man, jesse ruben, battling lyme disease crosses the finish line at the new york city marathon

 

It is a dream and an honor for me to be Team Captain of the GLA NYC Marathon Team. Whenever I am training, and I am tired or lazy or just don’t feel like running, I think about where I was five years ago. I think about all of the incredible people I’ve met in the Lyme community, who are too sick to leave the house. The fact that my body is well enough to carry me 26.2 miles is an absolute miracle. When I’m running past hundreds of thousands of people on race day, wearing that Global Lyme Alliance logo across my chest, I am running for all those people who can’t. 

I run to give them hope. I run to show them that they cannot give up. I run to inspire them. Because it could just as easily be me still lying in bed. 

The Lyme community is full of superheroes. With very little help from the medical community, or the government, we are forced to heal ourselves. We are raising money and funding research and trying to find an accurate test. We are creating support groups and providing each other comfort and hope. I know that there have been millions of people impacted by this illness. 

It is my dream that in the next few years, our marathon team expands, and we can raise millions of dollars annually. It is my dream that Lyme will be recognized as the epidemic that it is. That doctors will take us seriously. That we will be heard and treated. 

It is my dream that we will find a cure, so no one has to go through what I and so many other people have experienced. 

Until then, I’ll do everything that I can to help this cause. And that includes running those last 3 miles. South on 5th avenue, into Central Park, across 59th street, and up to the finish line. Those miles weren’t pretty. At a couple points, on the inclines, I had to walk a little bit. 

But, I did it. 

I crossed the finish line after running 26.2 miles. Not just for me, but for everyone impacted by tick-borne illnesses.

man, jesse ruben, finishes the new york city marathon while battling lyme disease

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Jesse Ruben is an acclaimed singer/songwriter touring nationally. He newest EP, “Hope,” was released in 2019. To learn more about Jesse and to check him out on tour, visit jesseruben.com

Jesse also founded the We Can Project, which is a service-learning initiative that inspires and profoundly connects students of all ages to the different they can make in their lives, their communities, and around the world. Learn more at www.wecanwecanwecan.com

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