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TOUCHED BY LYME: “Go for the openings!”

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Reprinted from LymeDisease.org with the kind permission of Dorothy Kupcha Leland. To read the original blog, click here.
TOUCHED BY LYME: “Go for the openings!”
It’s a question that comes up time and again in the Lyme community. Since most people with Lyme got nailed by ticks while they were out enjoying nature—hiking, camping or even just shuffling through a pile of leaves—should they ever allow themselves to go back out in nature again?
After years of illness, pain and disability, not to mention severe financial hardship, some folks are understandably fearful of revisiting the scene of the crime. How can they delight in the outdoors when they are so afraid it might send them right back into that hell they finally crawled out of?
It’s a tough call for parents of kids with Lyme, too. They want their children to experience the joys and beauty of nature. However, they’ve had a bird’s eye view of how destructive nature can be in the form of a tiny tick loaded with life-sucking pathogens. It’s easy to become almost paralyzed from fear.
So what to do?
In a recent email conversation, Nature Noir writer Jordan Fisher Smith had some ideas on this subject. You may remember him as the former park ranger featured in the Lyme documentary Under Our Skin. He was seriously ill with Lyme for many years before he finally got his health back after long-term treatment. Jordan says he often gets asked about how to deal with the fear of going back out into nature. Here’s his response:
One thing I like to tell people in my talks is this idea of “going for the openings” in our lives, which I got from my very good friends, the life coaches Sonika Tinker and Christian Pedersen. We tend to focus on what we can’t do, or the things that frustrate us, and the question is, what can we do? Thus, this idea of going for the openings. For example, ticks are not present on the beach. Take a beach walk, or if your family ever goes on vacation, find a place on the beach (maybe avoid Cape Cod!)
If you are very ill, find a place where you can rest in the company of nature—a deck with a bird feeder and a bird book to learn the species. Paved walking paths and bike trails with good vegetation clearance offer reasonable safety from exposure.
What about canoeing or a kayak? If you are too ill to navigate this on your own, what about forging an alliance with members of a local kayaking, canoeing, or rowing club—they have these two-person kayaks or multi-person rowing boats which would allow them to do the propulsion. They love to introduce people to the joy of being on the water, and almost every club likes to do community service.
Psychotherapist Sandy Berenbaum, with whom I co-authored the book “When Your Child Has Lyme Disease,” added her thoughts to this conversation as well. Sandy suffered through six years of unrecognized Lyme before getting diagnosed and treated. When she finally got well again, she was extremely reluctant to take up her previous activities of hiking and camping—and worried when her family wanted to do them, too. Her response to Jordan’s comments:
When my daughter was in her mid-20s, she told me she wanted to spend a week backpacking. Concerned about possible tick exposure (she did not have Lyme, but had witnessed my suffering), I said, “Why don’t you volunteer on the Clearwater for a week instead?”
The Clearwater sloop is a replica of a Dutch vessel from the 18th Century. Established by folk singer/environmentalist Pete Seeger, it goes up and down the Hudson River, stopping along the way to teach people how to protect and preserve our beautiful river. Bobbi did that, and had a wonderful, wonderful outdoor experience, as an educator. (And no worries about ticks!) Volunteers can be as young as 16. I recommend it to teens recovering from Lyme if they can handle the rigors of life on a sloop. My guess is that there are other experiences like that around the country.
Of course, “going for the openings” isn’t just about getting back to nature. It can be applied to all aspects of your life. Maybe you can’t do sports the way you could before you got sick. Is there something you can do? Are there gentler forms of exercise that you can ease into? Can you plan short activities with plenty of opportunity to rest in between?
If you have difficulties reading the printed page, can you listen to audio books and podcasts?
If you can’t go to parties or other social activities like you once could, can you have a fun visit with one or two friends?
The idea of “going for the openings” encourages us to look at our life in a new way. Not to view it as one big helping of “no can do,” but rather to break it down into bite-sized pieces of activities within our realm of possibility. It invites us to stay on the lookout for modest entry points back to the life that Lyme once took away.
In closing his email, Jordan continued:
In Lyme, you have a lot of awful days, and every once in a while you have a decent day. I always tell people to live to the absolute hilt on your good days. Grab every bit of enjoyment of life that Lyme allows you, and take back ground relentlessly like an advancing army. Take back your life even before you are cured, by living in the interstices between your bad Lyme days. Go for the openings!
What are the openings in your life, and how can you make the most of them?
Note: Jordan Fisher Smith’s new book, Engineering Eden, will be published in June 2016.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of  When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland.

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