By Stephanie Mandel

 

On Sunday, November 6th, 2016, singer-songwriter Jesse Ruben along with his friend and running partner Toni Blanchard were the first people to run the New York City Marathon for Lyme disease research.

Jesse and Toni are members of the Global Lyme Alliance’s Young Leaders Council and ran to spread awareness about Lyme disease and the need for further treatment research.

The Morrison Center had the honor of helping Jesse along his healing path from Lyme disease, and we now consider him part of the TMC family.

We sat down with Jesse just before the marathon to learn about his journey and his hopes for the future, both for himself and the larger Lyme community. We are pleased to share the story of his success and hope it will inspire those working their way back to health.

How did you find The Morrison Center?

I did a lot of research. I went to see a lot of different doctors before coming here, and received many different diagnoses: chronic fatigue syndrome, fibromyalgia…but no previous diagnosis covered all of my symptoms. In my online research to find answers, I came across The Morrison Center. I contacted everyone I knew who had Lyme Disease or had some connection to it. When I asked where they got treated, The Morrison Center kept coming up, so I decided to seek treatment there. I’m really glad I did.

Can you tell us about your healing journey and recovery from Lyme disease?

I started feeling sick at the end of 2012, and was diagnosed with Lyme in September of 2013, so I had nine months of not knowing the cause of my symptoms. It was a scary, hopeless time. Having Lyme was the most difficult experience of my life. It really takes a physical and emotional toll on you, not feeling well for that long, waking up not knowing how you’ll feel or when you’ll feel better. I was tired, sick to my stomach, dizzy, had headaches, brain fog, memory loss…my entire demeanor and personality changed.

After I was diagnosed, I went through almost two years of treatment: supplements, vitamins, powders, tinctures, the whole nine. My symptoms slowly lifted and I started to feel better. After two years of treatment, my physical transformation back to health was truly amazing.

The Global Lyme Alliance (GLA) was another big part of my recovery: Lyme can be a very isolating experience, and having a network of people my age that understood what was like had a major impact on my journey. It’s astounding how many people there are who have, had, or know someone with Lyme. There’s a huge network throughout the country, and I feel a responsibility to do something to help those who are still healing and dealing with the disease.

Wow. You’ve come a long way. How did running factor into your recovery?

It was a long process to figure out what worked for my body and what didn’t as I continued to heal; even though my symptoms had improved, I was still worried that I was going to push myself too far and that the bottom would drop out. But once I got over that fear, I got back into running within a couple of months, and running became a huge part of my mental recovery. People don’t talk about that mental aspect of disease recovery.

Running was huge for my recovery – hitting different milestones, getting out of my apartment, putting my life back together – you’re away from your life for so long, it takes time and effort to find your way back into it.

What made you decide to run the NYC Marathon?

I’ve always been a runner, and it’s always been important for me to give back. I used to run the NYC Marathon every year for charities like the Christopher & Dana Reeve Foundation. After my recovery – of which running was a huge part – the first thing I wanted to do was run the New York City Marathon for Lyme research, but it wasn’t that straightforward.

At first I was told I couldn’t: no Lyme-related charities were registered, nothing was set up. I’d been working with the Global Lyme Alliance (GLA) and was a member of the GLA’s Young Leaders Council, along with my running partner, Toni Blanchard. I’d luckily gotten a spot in the marathon lottery, so I told the GLA that I wanted to start a marathon program to benefit Lyme research. Once Toni and I discovered that we both had spots in the race, we decided to set up a Crowdrise account so that people could donate to GLA on our behalf.

From the outreach we’ve done, people have been donating and emailing us from all over the country, thanking me for spreading the word and raising awareness. 2.5 million people come out to watch the NYC marathon, so to be wearing a GLA shirt running past that many people…it’s going to be a really special day. When you’re sick, it can be difficult to imagine getting better. I want to prove to people who feel hopeless, that it can be okay. You can be healthy again.

That’s amazing. How are you feeling now?

I feel great. I do regular 6-8 mile training runs, which is standard, but it isn’t lost on me how amazing it is that I can do it when, for a long time, it was really challenging to walk three blocks. To move my body th at much…I feel very grateful. Marathon day will be an emotional day.

We’re so happy for you.

I’m honored and lucky that I found TMC. The staff was so patient with me, and to be able to run the marathon – I owe this office my life, one hundred percent.

The Global Lyme Alliance offers many ways to provide support for the fight against Lyme disease.