Tag Archives: lyme disease athletes

From Lyme to the NYC Marathon’s Finish Line

Running a marathon of 26.2 miles is a herculean effort even for most healthy people. But for those who suffer a chronic health issue, like Lyme disease, it requires determination and drive that most of us couldn’t even imagine.

 

On November 6, 2016, Toni Blanchard, of Greenwich, CT and Jesse Ruben, of New York, both members of Global Lyme Alliance’s Young Leaders Council, became the first Lyme patients to run the New York City Marathon for Lyme disease research. Wearing GLA T-shirts created especially for the race, Toni and Jesse ran to spread awareness about Lyme disease and the need to raise funds for further research. They set up a Crowdrise account and, together, raised over $15,000 for GLA.

Crossing the finish line was a dramatic achievement for both runners. Recently we caught up with them to talk about their success. We hope it will inspire those working their way back to health.

Can you tell us about your experience with Lyme disease?

JR: I started feeling ill at the end of 2012 and was diagnosed in September 2013. During the time when I didn’t know what was causing my symptoms, I was dizzy, nauseous, had brain fog, crawling sensations in my body. At one point I couldn’t even walk up a flight of stairs. I was a mess. After I was diagnosed, I went through nearly two years of treatment. My symptoms slowly lifted and I felt like I became a human being again.

TB:  I was diagnosed when I was six so I never knew what feeling “normal” meant. I had terrible body pains when I was young and my feet would hurt to walk. I experienced exhaustion and tremendous difficulty sleeping, but this was all normal for me, so growing up I never understood that I was compromised. Since I was young, running and exercise in general have been important elements in my recovery.

What made you decide to run in the marathon?

toni jesse lyme marathon ylcJR: The first thing I wanted to do after my recovery was run the New York City Marathon for Lyme research. At first I was told I couldn’t: no Lyme-related charities were registered. Luckily, I had gotten a spot in the marathon lottery. Once Toni and I discovered we both had spots in the race, we decided to set up the Crowdrise account so that people could donate to GLA on our behalf. It was an opportunity to be a voice for people who couldn’t run the race and to raise funds for the organization.

TB: I always wanted to run the marathon. Running has been a huge part of my health regimen. It allows me to detoxify my body and clear my head. The marathon was an opportunity to run for GLA, for the Lyme cause and for all Lyme sufferers, especially the kids.

Did having Lyme affect your training?

TB: I did a half marathon in April, but I didn’t start intense training until August. At the end of September, I did a 20-mile run in Greenwich and then I had to take a week off. My body wasn’t able to handle the intense training and from then on the longest I ran was 12 miles.  I questioned whether I could do the marathon, but I had already raised money for GLA and I didn’t want to let down all who had donated, so I decided I would walk to the end if that became necessary.

JR: My energy level and muscle recovery were affected. I did a 20 mile run about a month before the marathon. I noticed my body didn’t bounce back as quickly as it did before I got Lyme disease. I had to give myself an extra day to rest after my runs.

What was it like to run in the race?

jesse running nyc marathon lymeTB:  I was having trouble breathing and became quickly dehydrated. By mile 18, I was breaking down and I didn’t know how I’d be able to finish. It came down to my doing a run-walk and just putting one foot in front of the other. I was really dehydrated and nearly collapsed at the finish line. I then had to spend over an hour recovering in the medical tent. I finished in 4 hours, 12 minutes, but I expected to run it faster.

JR: I got a stomach flu the day before the marathon. That morning I had to ask myself, “okay, is this going to happen today?” I decided I would do the race, but I would run slowly and steadily. Instead of trying to break a record, I ran very, very slowly and finished in 5 hours, 11 minutes. The experience was emotional for me. At mile 22 or 23, I began to think “I want this to be over,” but I then thought about all the doctor appointments, IVs and what I went through to get to the race and I tried to stay in the present.

What was the best part for you?

toni blanchard nyc marathonTB:  It was great wearing the GLA T-shirts that were created for the race—they really stood out.  I was amazed to hear so many people along the path yelling out to me about their experience with Lyme. I also was so touched at the start when we were all gathered at the Verrazano Bridge. It’s such an international event and listening to all the different languages was amazing. Plus the support of everyone, especially little kids, along the route was great.

JR: It was a four-year journey between the last marathon I was able to run and this one—so it was very meaningful for me.  Representing the Lyme community was also very special. A lot of people at the event talked with me about Lyme.  Everyone knows someone with the disease. 

Would you do it again?

toni blanchard post marathonTB: It’s something I’m thinking about. It’s given me a lot of confidence going forward. It’s an opportunity to spread the word and raise awareness. It can be difficult to imagine getting better, but I want to give people hope and show those who are suffering that it will be okay and they can overcome.

JR: I am going to do it the next year, the next year and the next year. I can’t wait. But I’m not just running for me. Thousands of people are suffering from this disease and feel like there’s no hope. I want to show people with Lyme there is something besides the anxiety and fear that they feel day after day. I hope we have given people hope for their own recovery.

 

Lyme and the Olympics, Part Two: Of Dashed Dreams and New Lives

By Jennifer Crystal

In Part One of this two-part series on Lyme and the Olympics, I wrote about athletes who have survived Lyme and gone on to compete in the Games. These people are nothing short of inspirational. But what about the athletes who don’t recover from Lyme, at least not enough to return to competitive sports? Or athletes who don’t have a tick-borne illness, but trip in their final race, miss the game-winning goal, or sustain a career-ending injury? As a child, I remember watching in horror when Olympic athletes missed their dreams due to a broken skate or a torn ligament or, in some cases, by a millisecond. I wondered how those people felt. I wondered what would become of them.

As an adult who has had to revision her life around tick-borne illness, I know. I may not have lost Olympic dreams, but I did have to give up the life I lived and loved in Colorado, which was focused around skiing. The mere prospect of that, from my vantage point of bed, was terrifying. For the first few years—yes, years—that I was sick, I chose to ignore winter. Skiing had been my way of life for as long as I could remember. I spent weekends in high school ski instructing in Vermont; I attended a college that boasted its own ski hill; and I moved West after graduation for the skiing first, job second. When Lyme knocked me off my skis, I refused to get excited about snow or look at friends’ pictures of perfect powder days. If I wasn’t out on the hill, then winter simply wasn’t happening.

Except, of course, that it was. While I was so busy denying the season, I was also denying myself the chance to enjoy (as much as one can from bed) the present. One day I complained to a friend about how much I missed skiing. He asked, “Are there other, quieter activities you can do? Something new you can learn?”

His words struck a chord. It wasn’t so much that it hadn’t occurred to me to try something new—I’d tried knitting, and had gotten so neurologically overwhelmed that I’d thrown the needles at my bedroom wall—it was that I was afraid turning to a new interest would mean giving up on my old one. And without that old interest as my central focus, I wasn’t sure who I was.

I ultimately realized that giving in temporarily doesn’t have to mean giving up. When I gave into my illness, I allowed myself to reconnect with activities I hadn’t enjoyed in years, such as scrapbooking and calligraphy. I started writing. These quieter, more creative pursuits helped me to pass the time while I waited to get better.

They also helped me to realize that even though skiing was a way of life for me, it wasn’t life itself. The core parts of myself—my values, my humor, my connections with friends—didn’t disappear when skiing did. I was still Jen Crystal, even if I wasn’t Jen Crystal the Skier.

I did eventually get back on the ski slope, but certainly not in the way I had at twenty-two, when life was ski eight hours a day, go out, sleep a bit, and repeat. Of course, I missed that life. I still do. But my perspective shifted. Just being well enough to get on my boards, even if it was for one hour on the bunny hill, filled me with gratitude and exhilaration I couldn’t have known in my healthier days.

Though I did get back to a much gentler version of skiing, there are other sports I’ve had to give up entirely since getting sick. I used to be a slalom water-skier but haven’t been behind a boat in almost fifteen years. I haven’t been running in over a decade. I have, however, taken up new summer sports: paddle boarding and recumbent biking. They may not be as “hardcore” as my old pursuits, but they are fun activities that get me outside—what I missed the most—in a way that works with my illness. Had I ignored summer the way I’d once ignored winter, I would never have learned these hobbies; I wouldn’t have even known they existed.

It took me a long time to learn that life does not have to be over when you get Lyme, much as it may feel like it is when you’re bedridden. Life as you know it may be over, but that doesn’t mean life itself is over.

That bears repeating: Life as you know it may be over, but that doesn’t mean life itself is over.

Like fallen Olympic athletes who must give up their dreams, we must take the time to mourn the lives, the identities, we give up when we’re battling long-term tick-borne or other chronic illnesses. It’s an important part of the healing process. But then we have to brush ourselves off and figure out ways to reshape our lives. Because whether we acknowledge it or not, life will move forward. Instead of letting Lyme defeat us, we may as well bring it along for the ride.

To read about my first time back on skis, click here.


 

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness.

Lyme and the Olympics: Part One of a Two-Part Series

By Jennifer Crystal

When I was in fourth grade, I won an Olympic gold medal. Okay, it wasn’t a real Olympic medal, but when my gym teacher put it around my neck after my gymnastics routine in our school Olympics, I felt like I was up there with Mary Lou Retton. As my gym class emulated what we saw on TV—from swim routines (using scooters on the gym floor) to Opening and Closing ceremonies—I got completely swept up in the spirit of the Games. I can still recite the Olympic creed: “The most important thing in the Olympic Games is not to win but to take part, just as the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well.”

Little did I know, all these years later, how much that creed would apply to my own life.

Fighting Lyme disease is not unlike training for the Olympics. One battle may be fought in bed and the other on a field or court, but patients and athletes have similar goals.

At first, for both, the ultimate goal is to win. The patient only wants to get better, to be cured, to get back to his/her old life. The athlete wants to beat out competitors, to win gold.

Someplace within us, we always hang on to those goals. Of course Lymies hope for a cure. Of course an Olympic athlete who has trained for years wants a medal to show for it. But what about the Lymie who was misdiagnosed for years, who is on long term treatment that is helping but also causing Herxheimer reactions? What about the athlete who trained as long and hard as the medalists, but falls just short of the time or score needed to get on the podium? What about the Lymie who relapses, the athlete who trips and falls in the final race?

This is where the Olympic creed comes in. It can be really hard for Lymies—and, I imagine, for athletes—to remember that “the most important thing is not to win but to take part.” When I was shaking in bed from mini seizures, begging for sleep that would not come, and changing my sheets every couple of hours from drenching nightsweats, I’d had it with taking part. I wanted to win, but more often than not, I wanted to give up.

Had I given up, however, I wouldn’t have tasted the sweet victory of remission. I’m not cured. I’m not back to the life I led before Lyme. But I am living a great new life within the context of my illnesses, one that involves medications and naps but also teaching, writing, socializing, skiing, and paddleboarding. I earned that life by showing up for battle, every day. By taking part in the most hellish aspects of my medical journey. Participating in the struggle is precisely what brought me to a new definition of triumph.

The Olympic athletes I look up to now are the ones who embody the Olympic creed. Athletes whose training has been that much harder than their competitors’, because it has also involved fighting Lyme. There’s Elena Delle Donne, a member of the U.S. basketball team headed to Rio. Diagnosed in 2008, Delle Donne has struggled through relapses to become the WNBA MVP, and the first ambassador for the Lyme Research Alliance (which merged with the Tick Borne Disease Alliance to form the Global Lyme Alliance). In an interview with Reuters, Delle Donne said, “This season I’ve been playing well and staying pretty healthy so people just think the disease is gone. But it’s something I battle every single day.”

Other Olympic athletes who have shown up for the daily struggle of Lyme include Christie Rampone, captain of the 2012 U.S. Olympic soccer team, and Angeli Vanlaanen, freestyle skier who competed at the 2014 games in Sochi (Vanlaanen also created Lymelight, a video about her battle with Lyme. Despite poor conditions in Sochi that led to disappointing runs for Vanlaanen, she expressed in interviews how grateful she was just to be able to compete. For Vanlaanen, “the essential thing [was] not to have conquered, but to have fought well.”

For all of us struggling with tick borne illnesses, these athletes offer inspiration. They remind us that winning isn’t always about getting a gold medal, or being cured. The important thing is not for us to conquer Lyme, but to fight it well. It’s not an easy fight, but it is worth it. I can promise you that the new life I am living feels even greater than having a plastic Olympic medal placed around my neck. Remission is the real deal.