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Mindful Lyme

by Andrew Peterson, November 4, 2010 1:00 PM
Two and a half years ago, my health started going to hell.

It began subtly. Things that I could normally do effortlessly ? like biking up the small hill to my kids' school ? seemed to make me more tired than they should. The situation quickly grew worse. Activities like shoveling snow or raking leaves started inducing reactions that looked like (but proved not to be) cardiac episodes. I started having muscle twitches and spasms ? fasciculations, I learned to call them ? which popped and snapped all over my body, all of the time. I lost weight ? 30 pounds in four months with no change in my diet or my appetite. Parts of my legs and feet started going numb. I was overcome with a crushing fatigue, and it became harder and harder for me to think clearly.

As my symptoms spread and intensified, I went from doctor to doctor, trying to get a diagnosis. I saw oncologists, neurologists, rheumatologists, allergists, sleep specialists. I spent a long week at the Mayo Clinic because, for a while, it seemed frighteningly possible that I had ALS. I didn't, they said. But they couldn't tell me what I did have. Or what to do about my symptoms, which continued to intensify. I had CT scans, MRIs, ECGs, EMGs, and EGDs. I was tested for cancer, MS, celiac disease, Parkinson's, myasthenia gravis. Everything anyone could think of was ruled out.

I was also tested for Lyme disease. But the test I was given (a notoriously inaccurate screening test, I later learned) came back negative. And because I live in Montana, where Lyme disease supposedly does not exist, none of my doctors considered Lyme to be a real possibility.

As a result, it took two years to discover that what I had was in fact Lyme disease. Two years living my life in a state of unknowing.

÷ ÷ ÷

We all live in the presence of unanswerable questions.

But under ordinary circumstances, our daily lives aren't actively shaped by those questions. Most of the time our attention isn't relentlessly drawn back to the possibility that what is happening in our body right now might be a harbinger of our own mortality. We tend to think of our physical bodies as more or less static.

From a Buddhist perspective, we are attached to an idea of our bodies as unchangeable objects. We resist the awareness that our physical being, like everything else in the universe, is in a constant state of change.

This is by way of saying that living with an urgent but answerable question about my health proved to be a sort of invitation. It gave me the opportunity to enter into a new relationship with my own body, to become more mindful of my own moment-by-moment experience, to let go of my implicit assumption that the state of my health would always remain the same.

Like most people, I resisted this invitation for as long as I could. I pushed it aside, responding to my own undiagnosability by searching even more desperately for an answer. I focused most of my mental energy on the future, on a single question: what is going to happen to me?

I was aware that this was a pointless question. All the worrying in the world wasn't going to change my future. But the urgency of the question made it difficult to suppress those anxious thoughts.

It shouldn't have been so difficult. After all, I'm a psychotherapist. I spend my days helping my patients do just what I myself was needing to do: to step back and observe the workings of my own mind so that I could make more constructive decisions about how I wanted to think about my own experience.

Further, as all of this was happening, I was writing a book (The Next 10 Minutes: 51 Absurdly Simple Ways to Seize the Moment) whose very subject was how to live more mindfully in our everyday lives. In the book, I provide a series of exercises that focus our attention on the routines of our daily life so as to transform those routines into meditative acts.

At the heart of each exercise is the idea of acceptance. Start by acknowledging what is. Then observe your mind as it struggles against reality. Because when you observe yourself in this way, you give yourself the opportunity to form a different relationship to your own experience.

÷ ÷ ÷

It proved awfully difficult for me to follow my own advice.

But after two years of fruitlessly searching for an answer, I slowly begin to be able to let myself consider an alternate approach to my health. I began to ask myself a different question: what if I simply accepted this? What if, rather than seeing my physical symptoms as a problem to be solved, I simply accepted them with equanimity?

I struggled with the idea of "acceptance," which seemed synonymous with "giving up." But over time, I came to understand that when I shifted my attention away from long-range worries, I was able to engage my difficulties more constructively in the present moment. I was able to ask: what can I realistically do to help myself at this moment?

When I let myself shift my focus in this way, things began to change. I began to see that it was in fact possible for me to live without a diagnosis. And though the awareness came slowly, I saw that it was possible to move forward through my life without the sense of dread which, for many months, had been my constant companion.

Of course, as soon as I let go of my need to understand what was going on with my body, a diagnosis came. I was given a more sensitive test for tick-borne diseases ? the Western blot ? which came back positive for Lyme.

So just as I embraced uncertainty, the equation shifted. I had a diagnosis. There was a word I could speak which would explain my state.

Sort of.

Because it's not actually as simple as that.

For one thing, Lyme (or more accurately chronic Lyme, because at the time of my diagnosis I'd already had it for at least two years), is an insanely slippery diagnosis. There are plenty of people out there who will tell you that chronic Lyme disease doesn't exist at all.

And even if you grant the existence of chronic Lyme, the symptoms of the disease are protean and diffuse. Day by day, hour by hour, the manifestations of Lyme change and evolve. What this means is that I can't rely on my body to feel a particular way from one moment to the next. When I wake up in the morning, I can't know whether I'm going to have enough energy to move through the day or whether I'm going to be back in bed in a few hours. All I can count on is how I feel at that moment. And if I latch onto any particular expectation ? say, that I'll feel well or poorly in the next 10 minutes ? I set myself up for frustration.

÷ ÷ ÷

Over these past few years, I've spent a lot of time arguing with reality, trying to pretend that I could change the future by worrying about it.

You could argue that this is a definition of insanity.

At the very least, it's a recipe for suffering.

But as I've slowly grown more able to heed my own advice, I've learned that when I let go of my anxiety about the future and bring my attention into the present moment, I suffer less. I can move through my symptoms with something that almost resembles grace.

To put it another way: when I remain in the present moment, I regain my sanity.

Like anyone else, of course, I want to be able to plan ahead. I want to be able to feel a secure sense of hope about my future. And there are moments ? when I'm discussing treatment options with my doctor, for instance ? when I let my attention move out in this direction. But I still have no idea what, if anything, will ultimately work for me, and how long it might take. And there is nothing I can do to change this.

So most of the time, in order to retain a degree of sanity, I've started thinking differently ? more mindfully ? about my experience. I've tried to make it a habit to stop myself regularly throughout the day, to do a mental scan of my body and to ask myself a simple question: What I am feeling right now?

Then I respond. As compassionately as I'm able.

If I'm fatigued, I need to sleep.

If I'm in pain, I need to still my body.

If I'm struggling to think clearly, I need to put my work aside for the moment.

And whatever I am feeling, I remind myself that this moment will inevitably pass. And another moment will arrive, full of mysteries of its own, to take its place.




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8 Responses to "Mindful Lyme"

Andrew Peterson November 8, 2010 at 08:08 PM
Rachel - my kids love the book as well (which is about the best review I could ever get). My younger son especially loves the "Levitation" exercise...he really lets himself believe that it's possible, which is so delightful. When I was writing the book I realized that the exercises were often describing the sorts of things that children do naturally. I was trying to give adults permission to go back to that child's state of mind for a few minutes. I've been thinking a lot about writing a set of these sorts of exercises specifically for kids. I think that helping children use their naturally flexible minds to cultivate a habit of mindfulness could have very positive effects. And Lisa - thanks so much for your kind words. Your experience really validates what I was trying to describe in this post. I'm glad to know that you were able to move through your pain, and I'm delighted to know that my book was helpful to you. Andrew

Andrew Peterson November 8, 2010 at 07:44 PM
I was a boy scout as a kid (in fact, I'm actually an Eagle Scout), so I got a lot of practice lighting campfires when I was young. And when I first moved to Montana I lived in a cabin that was heated only by two wood stoves. Between those two experience I feel like I'm pretty good at getting fires going. The secret is simple: cheat! Use so much newspaper under the wood that the wood can't help but burn. It's amazing how long it took me to figure this out. I think it's that old boy scout flint-and-steel ethic (i.e., it's supposed to be hard). So I imagine that an exercise about lighting fires (and I love that idea) would play with the tension between our expectation that things should be hard, and the possibility of making them much easier...and the reasons we don't choose to do that. And thank you for those words about self-mercy, which I think is absolutely essential to develop if we want to advance personally our culturally. It can be amazingly difficult just to be compassionate towards ourselves. I have really hoped that my book could foster more of that, so it's good to hear you describe your experience that way. Andrew

Rachel November 8, 2010 at 01:00 PM
I learned so much from your post Andrew. While I don't have the same issues, I can certainly relate to feeling foggy, in pain, or tired, and what I need to do in response to that. And I can certainly relate to the dialogue around acceptance with equanimity and staying present. I have two kids, and your exercises in your book SO help me. And, they help my kids. They help me when things get crazy at work, or when I simply feel so overwhelmed I can't function. I applaud your transparency here - because I feel so many will benefit. I am honored to walk a little bit with you on your journey. Thank you for your work!

Lisa November 8, 2010 at 12:23 PM
I can appreciate your struggles. About 15 years ago I had a "bulging" disc in my back and had excruciating pain for over a year. It took months to realize that trying to predict my improvement was adding to the problem. Could be tomorrow. Could be never. I began learning how to appreciate what my body COULD do. With some mental focus and a lot of physical therapy and acupuncture, I did become pain free. But, it's easy to forget the importance of meditation once you are past your trial and busy with daily life. That's why I LOVE your book. When you can achieve some focus in 10 minutes, there's no reason to put it off. Thanks for sharing and for writing your book!

Heather November 8, 2010 at 12:11 PM
When you let go of the need to understand what was going on with your body, a diagnosis came... when you embraced uncertainty, the equation shifted. Thank you for this poignant reminder Andrew. And thank you for all of the little "tricks of the trade" in your book that help me so much with being present and, as a result, release me from my grasping for understanding and certainty. You make it all so fun!

Georgie November 8, 2010 at 10:16 AM
Andrew, I just want to say that even without a chronic pain issue, I have found that your book, more than any book on meditation, has helped me with practicing mindfulness and self-mercy, the latter being the one I have the most trouble with. I think it must be the sense of humor you inject into every little "meditation" exercise. I think your next collection should include lighting a fire in the fireplace. I'm pretty sure it is my ineptitude at doing so, but I can spend about half an hour focused on just lighting and maintaining a fire, and feel suddenly grounded and at peace (well, at peace once I have the dang thing going). Thanks!

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