Madison Area Lyme Support Group

In August 2014, my fiancé, Quince, and I drove from Wisconsin to Brooklyn for a friend’s wedding. I didn’t feel well, so he went to the celebration without me. A few hours into the day, I decided to text and see how things were going. I turned my head to look at my phone on the bedside table, and then I reached for it, lifted the phone, and brought it back to my lap. When I was done, I turned my head to look at the clock and saw that this process had taken almost an hour.

By evening, I had a 104-degree fever and lymph nodes like walnuts. After three bad days, my fever broke, and we drove home to Wisconsin—but I didn’t get better, not really. It was normal to feel weak for a long time after a fever like that, my doctor told me. She thought I might have tularemia, a rare infection that’s carried by rabbits. I had probably been around rabbits, I told the doctor, picturing the cottontails that crossed our field in the mornings, teasing the sled dogs. I mean, I hadn’t not been around rabbits. But my blood tested positive for anaplasmosis, a tick-borne illness, and though I completed a month’s course of antibiotics, a follow-up test revealed that I had Lyme disease as well.

The diagnosis was a relief, a game plan for healing: I would take more antibiotics and rest until I got better. After all, until then, my health had always made sense to me. It didn’t occur to me that might change—that my ability to move and work and be outdoors, to live the life I’d built, could dissolve in a week.

As that fall wore on, weeks and then months passing, I still couldn’t stand for more than a minute or two before my legs gave out. Most days, it took all my effort to move from the bed to the couch, then hours of shivering, catching my breath, before I could think about getting a glass of water. I was always thirsty, always shaking. I’d go to the basement laundry room, scooting my butt down the stairs to keep from falling, and get stuck halfway up the staircase on the way back, leaning against the wall with my heartbeat clanging in my ears until Quince came home and found me. This was the time of year when I should be training my dog team, building up mileage for the winter. I was supposed to be writing a book in the mornings, then harnessing the dogs and taking off into the woods, mushing long past dark on the winding snowy trails of the Nicolet National Forest. But I couldn’t even walk around the house.

What I wanted was to be taken out of my body, and then out of my mind. I watched all the seasons of Grey’s Anatomy and Mad Men and Buffy the Vampire Slayer. I watched coyotes out the window. I wanted to be part of anything that wasn’t me, and because I’ve always defined myself by my actions—I was a musher because I mushed, a writer because I wrote—I wasn’t sure who that was anyway. I couldn’t care for the dogs; Quince took over all the farm chores. I’d been vegan for seven years, but now I couldn’t cook, so I started eating whatever was easiest. I had trouble seeing friends, even when they came to our house, because after 20 minutes of talking, I’d start to fall asleep or just wish they would leave so I could fall asleep.

My world divided into things that did and didn’t require effort. I became acutely aware of how much life outdoors revolves around tolerable discomfort, or threading a thin line to avoid that discomfort: eat complex carbs and change your long underwear and do three push-ups before sliding into your sleeping bag and you’ll be sort of warm in a snow cave until morning, as long as you keep your hood cinched tight and don’t slide off your foam pad. I’ve spent a lot of nights in the snow, and it’s never good like a bed, but it’s pleasant in a different way, as a recognition of your own competence or a means to an end. But now that I was sick, I couldn’t absorb any discomfort. I needed everything around me to be perfect: the right temperature, the right light, the right soft surfaces and quiet voices. Houses are highly efficient shrines to comfort, and when you’re sick, it seems like that external comfort is all you have. Just as my life as a healthy person had been defined by time outside, being indoors became a symbol of being unwell to me.

Sometimes, on good days, I would try to bring that comfort outdoors, to wrap myself in blankets and shuffle into the yard and breathe fresh air that didn’t smell like my own illness. I’d spent enough of my childhood and adulthood in environmental education—studying it, then teaching it—to be well-practiced in that tidy lesson of choosing a spot in nature and sitting there alone for a set amount of time. This is meant to be a valuable skill. Sometimes you see things: pine needles spinning while they fall, or a marmot eating a dandelion stem-first so that, for a moment, the blossom rests on its tiny mouth like a kiss. The point is to practice observing, I guess, and let go of your agenda, but I’ve never been good at that. As a kid, I told stories in my head about what I was doing: Look at that girl. She’s really good at nature. She’s sitting quietly on a rock. Now she hears something! But as an adult, a sick adult, returning to this practice felt like an exercise in endurance. Let’s see how long I can sit here, shaking and dizzy, before I go back inside. Before I stop fighting to be my old self and just give up.

It would be three long years before I considered myself recovered, and even that came with an asterisk: Lyme disease can relapse. I didn’t come to peace with the illness, and I still haven’t, though I’m aware of my own energy every day, my ability to walk up a hill or carry a bucket or run the Iditarod, and I’m grateful—often staggeringly grateful—for each thing I can do. Whenever I lose my breath or get chilled, I wonder if I’m getting sick again, and the old symptoms visit every time I get a cold, which is far more often than I used to. I’m terrified of losing the life I’ve built, but I’m less afraid of the experience of being sick. Maybe I’ve learned to forgive myself for it, or I finally understand that there’s nothing to forgive.

I remember the first time I went mushing again, late in that first winter. The snow had fallen, and my fiancé brought the sleds from the barn. He harnessed the dogs and walked them to the gangline—there was no way I had the strength to walk a lunging sled dog—and clipped them into place. Normally I would step onto the runners, settle my feet onto the strips of rubber that serve as grips, wrap my hands around the handlebar. I’d pull the quick-release that held the dogs back, their yips shrinking to silence as the sled caught air over snowbanks. But this time, it was all I could do to walk through the snow, my legs heavy, and fall into the basket of the sled. It was only 20 degrees, but I’d dressed for 30 below: fleece pants under down pants, a down coat under my parka. I wouldn’t be able to stand up again, not without help. But it didn’t matter. Quince drove the sled, and it was beautiful, the sound of runner plastics on snow, the sound of breath in the forest. It was the most joyful thing I’d done, been part of, in months.

I had always been independent, proudly so. But what we think of as independence is still dependence on luck and gifts: the ability to rely on your own health and strength and mind, rather than leaning on the strength of those around you. In time, my way outdoors again was simple: I had help. A lot of help. Quince kept the farm running, tending his bees and caring for the dogs. Our friend Chrissie came to be a handler for the team. She had the strength to do physical work, and I had the experience to talk her through challenges, and in this way, with the dogs, we ran through hundreds of miles of the Wisconsin northwoods. The next winter, feeling strong, I entered a short six-dog race and did well—even though I could only cling to the sled, couldn’t run or use a ski pole to help the dogs up hills. We hadn’t realized it, but by pulling the extra weight of two passengers, the dogs had grown stronger than ever. Now they flew.

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**Comment**

Beautifully written and so true.  Written by a Wisconsinite, like many others, that live and thrive in the outdoors, until they don’t.