Friday, January 1, 2016


In January 2015 I got off the wait-list to take a class on novel-writing with the beloved Seattle novelist and best-selling author Maria Semple. I’d tried to sign up for the class some four months before, in 2014, but it was filled within the first hour of class registration. At that time I had yet to even try to write novel. When I suddenly learned I was off the waitlist, I still had not done any novel writing, not even in the slightest, not part of a first draft. I’d written many short stories and a memoir (an autobiographical book that reads like a novel). I was, in January of 2015, searching for an agent for the memoir. I'd had some modest success at publishing my short stories, enough think I wasn’t entirely crazy to keep working at my life goal of becoming a writer.

I was both elated and apprehensive as I did last-minute preparations for the class. It would met from 9 a.m. to 2 p.m. for four days in a row—more than I’d done in terms of being away from my house, in social and work setting, among ‘normal’ people, since I came down with Lyme disease in 1999.  

Not to mention the other students had all written first drafts of novels and were submitting the first ten pages to the class, while I, with only a few days’ notice, managed to edit the first pages of a half-written short story, thinking I might be able to turn it into a novel.

The class was indeed a stretch, given the way Lyme limits my stamina. By 2 pm each day my head was exploding, while my body craved both sleep and exercise at the same time. I drove home in a daze to find my spastic dog was bouncing off the walls from spending so many hours alone. The delicate balance of my well-being seemed to have been put through the shredded-wheat machine, and yet the week-long class was entirely worth it. I’d learned more than I'd imagined and had been infused with Maria Semple’s boundless energy. I was determined to write a novel.

If nothing else wonderful or even particularly good happens to me this year, I won't mind, because I took Maria Semple's writing class,” I wrote in a post on this blog a few weeks after the class. I’d been working on my novel every day since, I noted, and would keep writing until it was done.

Looking back at this I have to laugh. I notice the date of that post is February 14, Valentine’s Day. That day I was feeling particularly down about being single, and I resolved to get back on the dating scene. And so the next week I went to speed dating at a bar on Capitol Hill. I met a really cute, smart, creative guy who soon became my boyfriend.

Starting a new relationship is fun and wonderful, but I imagine for even normal people it can sometimes feel like it takes a lot of energy. Starting a relationship while you have a serious chronic illness is fun and wonderful, but can feel like it takes a supernatural amount of energy. Thankfully I'd found someone who didn't seem to mind at all that I needed to take a nap every day or pause every so often to take pills, and didn't have any particular interest in staying up late into the night. Still, I was going lots more places than usual, and each time I leave my house I need to be extremely organized, packing all my supplies, medicine, water, and food so I can stay on my diet. It took time, and I sacrificed a little writing time for this. I figured it was worth it.

From a weekend in May in Washington's apple country (my boyfriend, an architect, designed the house).

Fourth of July Weekend on Puget Sound


Meanwhile, I’d volunteered to be the treasurer for my dance group as we prepared to perform in the city’s annual summer solstice parade. Clearly someone needed to do it, and I figured I had the extra couple hours per week that many other dancers didn’t have. I'd be selfish not to pitch in.

Soon after parade rehearsals started, the director asked me if I would be one of the lead dancers. This was a dream come true for me—a mini dream, dance dream, but still a dream. I was elated. I was also one more time commitment, one of many that were adding up.

Not many weeks after that, one of the letters I’d sent out to literary agents in New York got a response. The agent was reading my memoir at a breakneck pace. She loved my book. We talked on the phone. A few days later I was signing a contract. This was a giant dream come true: I had an agent at a prestigious agency, meaning my book was on its way to finding a publisher.  

Things ensued from there: final edits of my book, dance rehearsals, making my costume for the parade, organizing a fundraiser for our dance group, meeting my boyfriend’s friends and family, weekend trips with my boyfriend, the parade day itself. 

The day of the Solstice Parade
Dancing with the very talented Mona Owens

Exhausted at Parade's end

In all of this my roommate moved out to live with her boyfriend. So I was looking for a new roommate, which is in itself like dating. When the right roommate responded to my craigslist ad, she turned out to be a summer intern who would need furniture, so I found myself with a drill in hand, following IKEA instruction manuals.

Next thing I knew I was devising a system to keep my medicine and supplements cool and dry in the desert without refrigeration (a combination of picnic coolers, ice, and vacuum-seal tupperwares), because my boyfriend asked me to go to Burning Man, and I figured why not just give it a try? It was a rare chance to do something different. After that my boyfriend had his first art show (watercolors) and then I flew home to visit my parents whom I dearly missed in all this hubbub of meeting people.

Hiking on the way back from Burning Man

By then it was October, the summer intern had come and gone, I had a new roommate (third of the year) sharing my house, the extremely likeable Christiana. I threw a welcoming barbeque for her.

I rounded out year with another fundraiser, this one for my friend Amanda’s organization that helps refugees from Syria and Iraq. (It seems this year I’ve hit on a good formula for raising money for non-profits out of my home, which includes having a potluck dinner and combining it with a raffle of artwork and services that friends donate. It’s a lot of fun, but it also takes quite a bit of organization.)

This fabulous print of Amman, Jordan, made by Samer Kurdi, was one of the items we raffled at the fundraiser for Syrian refugees. We raised $2,500 from the party.

In the onslaught of all these very wonderful, very social and energy-intensive things, something had to give. I put the novel on hold and never got back to it. I worked with my agent editing my memoir and worked on short stories. I was still writing every day, but not as many hours as I liked, and it seemed there was always something interrupting my writing time. I kept thinking I’d get back to the novel as soon as things settled down….

And meanwhile I was waiting to hear from my agent, who was waiting to hear from publishers about my memoir.


It also happened that 2015 was the year I was 42, or at least 42 for 359 days of the year. I am not a believer in magical numbers, but for all those nerdy or even slightly nerdy people of my generation, 42 is significant. If you read Douglas Adams’s Hitchhiker’s Guide to the Galaxy series even half the times I have, then you’ll recall that the number 42 is the answer to the question of Life, the Universe, and Everything. I couldn’t help but connect the mystique of this number to all the amazing things that were coming my way in 2015, and yet I often I felt like I was on an iridescent, flying dragon—way up in the sky, riding bareback, blinded by the shimmering scales and wings surrounding me, and holding on for dear life.

Inspired by the summer parade, I made headdresses for other Fremont Arts Council events and costume parties. This one I made from tissue paper, branches and a headlamp.

A dancing girl costume at another party. I made it out paper bags, with some help from my talented BF. Rebecca Maxim, a friend from Burning Man, is on the right, looking amazing as usual.

As the weeks slipped by, there were a few times I longed for the dragon ride to end. I missed the quiet and sustained creativity that was mine when my life was more solitary, the times I was working on my memoir,  or able to focus without any interruptions on short stories. The weeks and months when I devoted four or five hours a day to writing were when I felt, despite a certain loneliness, that the greater part of my spirit was in balance. I went to bed with a deep sense of peace and woke up feeling the same. But this year, most days I managed to write only two or three hours, and even that between a series of interruptions, with an octopus-like to-do list waving its tentacles from beside my computer.

At moments I found myself more agitated than I liked. Yes, Lyme can make your heart race uncomfortably and bring on a sense of panic for no particular reason, and I've learned to ride these times out. But sometimes I felt there was more to the panic, that I simply needed more down time.

And yes, there were all sorts of wonderful things happening, or things I was helping to make happen, things I felt I couldn’t say no to, and yet the one thing I longed for was simply to write more.

Yet another headdress in progress. Not a way to write a novel.

As my days as a forty-two-year old dwindled I tried to keep at bay the uneasy idea that my run of good things was sure to come to an end, and probably before I turned forty-three. Because if there is one thing Life, the Universe, and Everything have taught me in my forty-two years, it is that Life, the Universe, and Everything are not about having an endless string of wonderful things happen to you. (And when the non-wonderful things come your way, be grateful for the things that are still good. Also, as a general rule, focus on the stuff you can change and do your best to accept the stuff that sucks, not to mention to thine own self be true, &c, &c, &c.)

Wearing the last headdress of the year, with my pal Marian at the Winter Solstice Feast.

Each time I thought of the lack of news from my agent, this thought about Life, the Universe, Etc. returned. At last I sent my agent an email and got her reply containing the disappointing news.

My book had received a myriad of complements from editors but no one wanted to take it on. It just happened that a well-established writer would be coming out with a similar book at the very same time that mine would be published, if anyone were willing to publish it, which they weren’t because this writer, who’s been given a fellowship at Radcliffe (aka Harvard) to write her book, would have every publicity outlet tied up. If my book were to be bought at this moment in the publishing cycle, it would be guaranteed not to sell. Basically it came down to extremely bad timing, and there was nothing to be done.

My agent was very, very nice to me when she told me this. We talked it over and decided our best strategy for my memoir was to wait and try again when it seemed right, perhaps a few years from now. Meanwhile, she said, it would be good to get a book of fiction out. Essentially my agent was asking me if I had a novel handy, and my answer to that was no. (No matter that I have completed a book of short stories. Short fiction is not marketable, despite quite a few of the stories having won awards or made the final round of contests. Short stories are simply not money-makers.) 

I had an idea for a novel, the first hundred blundering pages of a first draft, and a spark I’d kept cupped from the wind since taking Maria Semple’s class last January. That class now seemed a universe ago, although little more than ten months had gone by.

And so the year came to its close. The dragon did a final loop-de-loop and came in for its bumpy landing. Since the first week of December I’ve been working again on the first draft of a novel I set aside last spring.

That same first week of December I felt very, very sad for my memoir that didn’t find a publisher in 2015. Yes, I knew I should be grateful for everything good in my life—including healthcare, food, a cozy house, friends at arm’s reach, the ability to dance and run, a super new guy in my life, not to mention overall life circumstances that allow me to write in the first place. I know, I  know, my life is really good right now. So good that sometimes I think about renaming this blog The Princess of Lyme Disease. And yet I couldn’t help but feel really down. I’d lost my chutzpah, I didn’t try to find it. I just cleaned up from the last party of the year, the fundraiser for refugees, and made sure nothing interrupted my writing time.

A few weeks later and I’m feeling a mix of happy relief to have this giant writing assignment. That is to say, not throwing parties no matter how good the cause, not meeting new people, not making more headdresses, nor going on adventures, but instead retreating into my quiet house and being the invisible person I love to be. This is all I care about for 2016: staying home and having a long, complicated, introvert’s journey, a literary adventure of my own making. Other things will happen, I'm sure, but this year writing time will come first.

Resolution. Gratitude. Peace.

Thursday, October 8, 2015


Although it was a month ago, I'm still posting about Burning Man. It was a stretch for me to go with Lyme disease, but it was one of the most fascinating trips I've ever taken.

Some of our neighbors, across G Street, who lived in tepee tents for the week

On my first excursion to see art work, with my hair and face covered with scarves and goggles to protect from dust. I'm getting water from my pack before I check out the giant squid.

It was Tuesday, my second morning at Burning Man, and due to the shock of adjusting to my surroundings, plus some exhaustion from the trip down, I hadn’t done much the first day. The second morning I woke up feeling better. I had the intention of further regaining my balance by finding somewhere quiet to read and write in my notebook out for a few hours before I worked up the energy to explore my surroundings.

My quiet house in Seattle,
where I can be a hermit
Normally, I don’t like to do anything that isn’t reading or writing before 12 noon or longer if I can get away with it, especially not anything that involves being around people, or actually talking. Mornings are rough for me. I feel slow and achy and my brain and body need to go at their own pace. Therefore, I stay in my very quiet house in my quiet neighborhood in Seattle, and I write. I am grateful to be making some sort of a career out this, because it is exactly what I need and want to be doing, pretty much every morning, every day of the year.

That Tuesday morning at Burning Man, my boyfriend wanted to go on an art tour. He’d mentioned this tour a couple times on the drive down, and on Monday. My vague idea was that I would let him go do that, and we’d find each other when the tour was over.

I didn’t expect to do any writing at Burning Man, and so I brought two books, thinking I’d read in some quiet spot in the mornings, and this would be my alone time, my sanity time.

I did not understand Burning Man at all.

Here’s the way Burning Man works:

1) There is no quiet spot.

2) You’re way too stimulated and tired at the same time from all the loud thumping music to anything like read.

3) The morning is the best time to get out and see things, because by 12 noon it’s blazing hot, the wind has picked up, and the air is full of dust blowing continually from south to north, covering everything and making it hard to breathe.

This was why my boyfriend, when I told him I didn’t think I’d go on the art tour, gave me a look like I was crazy. I’d never gotten that look from him before. He is one the most laid-back, take-things-as-they-come people I know, so when he looked at me like that, I got a clue. I changed my mind and decided to go with him.

Inside the kitchen tent, where I made coffee
while fellow campers talked about how lucky
we were to have found a quiet spot, which
blew my mind because this was the loudest
place I'd ever been. (See previous post!)
The tour was leaving in 15 minutes. I had just enough time to make coffee, which I poured into our thermoses, and pack a couple of apples. We hustled over to VW bus camp across the street, the starting point of the tour, where we joined a line to climb onto the tour vehicle: a double-decker bus built in the shape of a VW microbus. It was soon crowded with burners (or Burning Man attendees), mostly from the VW Bus Camp itself.

Thank you, Phil Berg, who took this picture of "Walter" the VW Bus Art Car.

BACK GROUND ABOUT BURNING MAN (skip this if you like)

Burning Man is a temporary city set up in a remote part of the Nevada desert. The organizers of the gathering lay out streets in a clock-shaped grid, and most burners arrive in small groups of friends, in cars or RVs, and find any empty spot on the grid to camp in. Some people organize themselves well enough to have what are called ‘theme camps,’ which offer workshops, classes, open bars, or parties throughout the week. My friend Rose was a member of Camp CuriOdyssey, which threw some big parties. My fellow dancer Cameron stayed at Camp 11:11 (‘Camp Eleven Eleven’) which has an art car and bar. There is Contra Dance camp, and Chakralicious Camp, and the Alternative Energy Zone. VW Bus camp was for people who loved their VW buses enough to drive them to Burning Man and spend the week living out of them.

Our camp at our evening dinner gathering, close to sunset
Some of the members of our camp had once been part of VW Camp, but due to a small disagreement about what’s the best way to keep clean at Burning Man while having the least environmental impact (shower vs. baby wipes), our camp split off from VW. This disagreement was very friendly, so we camped nearby. Our smaller camp of 16 included engineers, doctors, nurses, architects, and teachers, one accountant, and one writer. Quite a few people in our camp were also artists in their free time. We ranged in age from early 60s to mid-twenties and were mostly from Seattle or Portland


My boyfriend and I climbed onto the giant VW bus for what we thought would be a guided tour, with information about the art. But like many things listed in the official guidebook at Burning Man, some of the details were off.  It was an art tour without the guide part: simply a ride out to the art installations on the desert, with stops for people to get off and look for a few minutes, then get back on the bus. All the bus was blasting music and people were sharing drinks. (Blasting music and sharing drinks seeming to be the baseline for most everything at Burning Man.)

You can imagine that the VWers were not the techno crowd. The music they played was enjoyable (Bob Marley, Natalie Merchant, Talking Heads), although louder than I would have liked. I put in my earplugs, and then did some polite-but-assertive angling to find somewhere to sit. The bus designed for standing room only, with a few ledges where you could sit comfortably. It was also packed, making me self-conscious about insisting on a seat. Anyone going by outward appearances would assume that I’m healthy and have no need to sit down, but I knew that if I stood up for an hour, especially in the morning, it would kill me for the rest of the day.

On the tour, suddenly I understood why people drive from all over the country to camp out in the blowing dust and the heat. At Burning Man you see things and experience them in ways you simply won’t anywhere else.

Some of the art I saw at Burning Man. True confessions: these pictures are of things I saw Weds, because I put most of my Tuesday pictures in the previous post. (Which you should read if you haven't yet!)
This 'Church'...

...had this amazing organ inside. One of my favorite installations.

Detail of the carved skull hanging above the organ

This sculpture was really cool...

...and a nice way to take a self-portrait without using the selfie button.


I deliberately didn’t read too much about Burning Man beforehand, because I wanted things to come as a surprise. I researched just enough to know if I there would be coffee, that I wouldn’t be entirely roughing it in terms of the bathrooms, that there would be a way to bring my medicine and my own food, and what to wear. Beyond that, I wanted to experience it when I got there, without too many preconceptions.

The Temple at Burning Man. Thank you to the BF, who took this photo and most of the pictures on this post. (He chooses to remain anonymous.)

This was why when the tour came to the Temple, I had no idea what it was. The Temple is an important part of the gathering, perhaps more important than the Man itself. Built deliberately to be burned down on the very last day of the week, it’s made out of plywood. It pertains to no particular religion, or to all religions. Throughout the week, people write the names of friends and family who have died on its walls, and they bring items that are tributes to the deceased and leave them inside. All the tributes will be burned when the temple is set on fire.

My boyfriend explained this to me as we walked towards the Temple.

“Is there someone you’d like to remember?” he asked me as we came up to the entrance.

“Yes,” I said, thinking of my doctor and friend who died in 2014, Carolyn Humphreys.

He somehow produced a Sharpie and handed it to me, and then I lost him in the crowd as I walked through the silent temple, looking at all the names on the walls, wanting to find a good spot for Carolyn’s name.

Inside the Temple

I found myself crying deep, overwhelming tears, while I walked. There were so many names, names everywhere, and posters people had made with photos of their loved ones.

I saw a photo of a young woman with a cat, which reminded me of Carolyn. Next to it someone had put up another poster, for a sister, her head bald from chemo. FUCK CANCER!  the poster read. I cried for this young woman who died, but I didn’t want to write Carolyn’s name next to FUCK CANCER! That kind of anger was not like her. I walked on, reading more and more names and crying harder.

I saw a bench with two people sitting cross-legged, holding hands and meditating in the silence. This took me utterly by surprise. In the middle of all that that pain and grief they looked so calm, and there calm was also such a contrast to the drinks and blasting music on the bus I’d just been riding.

The meditators reminded me of Carolyn. Everything seemed to remind me of Carolyn.

She had been so important in my life. She was the doctor. She pulled my life out of the trash can. Although she didn’t officially diagnose me with Lyme, she essentially did, saying ‘this is what I think you have,’ and sending me to the Lyme expert who put me on antibiotics. And then with her wonderful naturopathic expertise, her caring spirit and her laughter, she got me through those first grueling years of antibiotic treatment.

It is now impossible for me to think about Carolyn without a sense of awe that she got me to where I am now.

The years since my diagnosis have not always been easy, and even now every day I am constantly preoccupied with how I feel physically, negotiating my way through little blips of brain fog and drops in my energy and blood circulation, worried that I won’t sleep at night if I don’t get the balance of exercise and medication just right. And yet I am doing so many things that for a decade of my life I wondered if I would ever be able to do again—such as walk down the street on my own two feet, live in a house that is not my parents’, write, read, and in general spend the day actually doing things instead of lying in bed.

Every time I think of Carolyn, I am filled with gratitude for this. Every time I think of her, it seemed impossible to me that I am here and she is gone. And now here I was at Burning Man—Burning Man, of all places!—going through this wave of emotions for Carolyn, one more time, in this strange place, and still feeling bewildered by my grief.

How could someone so powerful, so vibrant, die so suddenly?

I had walked the length of the Temple when my boyfriend found me. The wind was picking up and the dust was starting to blow. It was time to go back to the bus. I looked for a spot for Carolyn’s name and finally found one, and wrote some words that were far from adequate. “Thank you for getting me here. You’re with me always. I miss you,” I wrote. “Be in peace, Carolyn.”

I left the Sharpie for someone else to use, and we turned back towards the bus.


Tuesday, September 22, 2015


Picture me in a tent in the Nevada desert, the night I first arrived at Burning Man. I am alone and I am not happy.

For the two previous days I’d been on the longest road trip of my life, over sixteen hours in the car, the last three of which were in both a dust storm and a broiling traffic jam—the bottleneck at the single-lane entrance the Black Rock Desert, where Burning Man is held. I had loved the road trip, and hadn't minded the traffic jam. It was all part of this very different vacation I was taking with my boyfriend, whom I'd met speed dating six months before.

Our tent at 2:45 and G on the Burning Man grid, with the Cascadia Flag.
Once through the traffic jam, my boyfriend and I found our way to our campsite (an empty spot on a largely empty block, since it was the first day of the festival). We immediately got to work pitching tents and helping set up a shower as the sun blazed hotter and hotter. We were two of the first four to arrive at a campsite that would eventually have sixteen residents, and we worked steadily to get everything done before sunset. Without a kitchen, I sun-brewed coffee on the dashboard of the car, gratefully drinking it down and setting up a second round. I was short of sleep even when we left Seattle, and that coffee was the only means to keep myself going.
The first thing I saw when we arrived was part of the shower
system, an 'evap pond,' to prevent the graywater from draining
into the desert ground. Nothing else at our camp was up yet.

As we worked we listened to James Brown, not by choice. A block away a group of twenty-something men were building a Geodesic dome, and they had chosen the music—not a few songs, but the sex-machine’s entire repertoire. It was a lot of James Brown, and loud enough that I considered getting out my earplugs. As the Geodesic dome grew and the soundtrack switched to electronic music, I found my earplugs and put them in, which only cut the sound by a fraction.

The sun blazed on. We helped put up the giant kitchen tent that would serve our whole camp, unfolded chairs and a table, and a camp mate produced cookstoves and kitchen gear. Suddenly things were civilized. We ate dinner as the sun set and the techno beat drummed on.

The kitchen tent at the end of the day
Our neighbors with the Geodesic dome,
and non-stop electronic music

After dinner I started to walk out with others to the playa, the center of Burning Man, but I turned back before I made it there. I was so tired I could barely think straight or walk straight, and realized I wasn’t up for seeing anything spectacular, so I walked back to the tent by myself.

Picture me an hour later, in the tent alone. I’ve put on my pajamas and spent 45 minutes going through my nighttime medical routine, taking everything out of the half-sized cooler which I’d carefully transported from Seattle with a bag of ice so my medication wouldn’t be ruined by the heat. Lyme-fighting routine done, I lay down, although I had little hope that I would sleep.

When I closed my eyes, they filled with tears—because there were three different tracks of electronically generated music blasting into the tent from three different directions. It was so loud I couldn’t hear my own breath. My heartbeat involuntarily accelerated to the competing, frantic, synthetic beats.

Among the many things I had bought to prepare for Burning Man were both earplugs and construction worker’s earmuffs. I had understood there would possibly be unceasing music, and there would definitely be loud music. (“That thumping techno beat,” said a friend who had been to a regional Burning Man event, “it’s going to always be in the background and you won’t be able to get away from it.”) But the truth was I had no idea what I was in for.

While getting ready for bed I had put in my earplugs and over them the earmuffs and I still heard and felt the music, blasting into my ears, through my veins and bones. Desperate, I tried playing a white noise track I had on my own MP3 device, of waves crashing on a beach. Instead of drowning out the techno, it only sounded as if someone had setup an obnoxious, thunderous techno party at the beach.

If the music weren’t so inescapable and exhausting, if my nerves hadn’t felt so shattered, this would have been funny.

This was music transformed, remade into a destroyer god—if this electronic stuff, pure repetitive, aggravating beats, could even be called music.


I was once in a yoga class when the teacher said, “Now that we’re in pigeon position, see if you can reach your right hand back to grasp your right leg at the ankle or the calf, and from there hook your heel into the crook of your elbow to stretch your ribs.” (or some such complex, yogic pretzel-ish move)

“I’m not quite picturing how to do that,” one of the students said. “Can you demonstrate it so I can see what to do?”

“Actually,” the teacher said, “if your brain can’t follow the description, it’s a good indication that your body isn’t ready to do it yet. So just stay in the pose you’re in.”

Your brain cannot conceive of what the body cannot handle, or what the brain itself cannot handle, not until it encounters these things in real life. Before that moment in the tent at Burning Man, I had not been able to conceive that this assault on my nervous system could possibly happen, precisely because it was far too much for my nervous system to handle.

So I lay on the air mattress and cried, and I understood that coming to Burning Man had been a giant mistake. It occurred to me that I had written two fantastical/sci-fi short stories about women who are driven almost crazy by ceaseless music (one of them you can read here)—and even those stories the music never reached this pitch. I had willingly walked straight into a nightmare beyond my imagination.

What I was missing: night scenes from the Burning Man playa

At 11:30 pm, my boyfriend, who had walked out with the others to the playa, came back our tent. I turned away as he unzipped the door and came in. I didn’t particularly want to see him at that moment--or rather, I didn't want him to see me.

I had come to Burning Man because several months before my boyfriend had asked me if I wanted to go.

My boyfriend had not asked me to come with him to Burning Man, he had asked me if I wanted to go, and this was an important difference. That past winter, before he met me, he had decided to go because a group of his close friends were going back that year. When he asked me if I wanted to go, he had said something along the lines of, “I don’t want to influence your decision. I won’t like you any less if you don’t go. Burning Man isn’t the center of my universe and you should only do it if you want to.”

I decided that this was an opportunity to go somewhere and do something new, which is rare for me, because of Lyme disease and chemical sensitivy. I was motivated by curiosity, and by a sense of challenge. (Could I actually manage Burning Man while also managing Lyme?) And let’s be honest, I was also motivated because I wanted to do this with my boyfriend. I wanted to go on what amounted to an adventure with him.

It would have been very easy at that moment to blame my boyfriend for the shape I was in, but I couldn’t. This was my own mistake, from start to finish.

“You’re not asleep?” he asked now, when he saw me shift in the bed. I shook my head. I tried not to show him I was crying. In a few minutes he figured it out anyway. He put his arms around me and said things intended to comfort me.

“It’s just so loud,” I said through my tears. “I didn’t know it would be this loud.”

He said more things that under normal circumstances would have comforted me, but the music was still happening, and my body was still in shock.

At the same time, I was trying to understand how my boyfriend could think this was an OK place to be, not just for me, but for him, a place that was worth driving twelve hours to get to.

What had I seen so far of this man that would have given me a clue? The way he doesn’t like loud restaurants? The hours he spends tending his garden and hiking? Or quietly, deftly turning out watercolor paintings? The way he talks about the importance of getting out into nature, away from electrical devices and the electrical grid? Or that he decided against buying a piano in part because playing it would bother his neighbors?

“I know it’s loud,” he now said. “I remember the first time I came and I was trying to go to sleep and it felt so confusing, all this music coming at you from different directions, but then you just close your eyes and fall asleep.”

It was then that I understood that my boyfriend, as gentle and calm and tuned in to music as he is, has a nervous system work that works entirely differently from mine. That was why he hadn’t warned me clearly about the electronic dance music. He has the ability to simply block the music out, and so he assumed that I did too.

Soon this gentle, thoughtful man fell asleep in the middle of the maelstrom. I lay next to him, not asleep. I tried paying attention to my body. I sought out my breath. Yes, it was still there, if I concentrated I could feel it.

This is the oldest meditation technique in the world, literally: paying attention to your breath. My breath felt like a battle, but I told myself that as long as I could I feel it, it was some minuscule benefit to me and I could therefore make it through the night, sleep or no sleep.

This must have done some good because eventually I remembered there was one last herbal medication I could take, a tincture (called NT Detox) which I reserve it for when I absolutely can’t sleep. I found it in my medicine cooler at the end of the bed and used a flashlight to open the little bottle and take one drop, which is all I usually need to knock me out.

I lay back down and put my pillow over my head instead of under it. It didn’t muffle the music, but it was comforting. I found my breath again.

I must have fallen asleep because I woke at 4 a.m. The music was still blasting from all directions. I fell back asleep and woke again at 7:30. The music was still blasting. The fact that I had slept, however, seemed like a miracle.

I got up and found my shoes and started on the two blocks to the port-a-potty, knowing I’d been a dufus to come to Burning Man. The only thing to do was to get on a bus to Reno and then fly back to Seattle. I would figure out how to do that after breakfast. As I walked, the music faded away behind me and other sound systems from other camps took over.

The bright glow of sunlight across my face distracted me from my thoughts, and I looked up from my feet. I took in my surroundings. I was in one of the most visually stunning places I’ve ever seen.

The morning light across the desert was a fresh, yellow-gold hue. There were breathtaking mountains spiking across the horizon, in browns and russets.

A corner of Black Rock City in the morning. My iPhone photography skills don't do it justice.

The camp-city around me was a variety of tents and hexi-yurts, which are yurt-like structures made out of silver-sided, insulated sheeting. The hexi-yurts looked both ancient and futuristic at the same time. People were also putting up lace-like netting for shade, and building towers that would be the markers for their camps. I saw bikes tricked out to look like animals, and people wearing playful, elaborate clothing it was joy to see. Everything looked as if I’d stepped onto one of the best sci-fi movie sets imaginable.

A neighboring camp

A steam bath other neighbors set up, with evap pond

Another nearby tent

On the far side of the port-a-potties there was no blasting music. I walked on in that direction just for the sake of the quiet. Someone was building a giant golden dragon on wheels, the size of a city bus—one of the art cars I’d heard about. In the far distance was a bright red satin tent that looked as if it came out of fairytale.

The golden dragon: when it wasn't touring around Black Rock
City, it rested a few blocks from our camp

As I drew closer it seemed it was just someone’s tent. I suddenly felt hungry. Needing breakfast and coffee, I reluctantly turned back to our camp. When I arrived, the EDM was still blasting and my body and brain returned to their state of shock.

This is the wrenching contradiction of Burning Man. Visually, it was wonderful. People often compare Burning Man to the movie Mad Max, and this is partly true. I would say it’s Wes Anderson mixed with Mad Max, mixed with Steampunk, mixed with Traveling Circus. If you want to be endlessly amazed visually, go Burning Man.

But when it comes to the auditory side of Burning Man, it’s a disaster. It is entirely acceptable that anyone can blast any kind of music, most often the worst kind, at the highest decibels possible. People who return to Burning Man year after year are those who either like electronic music or have the ability to tune it out, no matter how loud. Even with earplugs, Burning Man is a recipe for going deaf young.


I am not able to tune out music. In normal life, I get worn out by the music playing in so many places. I once felt myself growing exhausted because a cellist was playing Bach at an outside seating area where I was having a conversation with a friend—I couldn’t handle both at once. Reading or writing while there’s music is impossible for me. This is the primary reason I don’t ever spend time in cafes: there’s always music, and it’s always loud. I’ve had moments when I’ve struggled to finish grocery shopping because of the background music in the store.

“How is that possible?” someone once asked me. “You dance all the time.” True, I am a dedicated dancer, taking classes and three times a week and practicing at home. And yet there’s no contradiction. I am all for listening, actually listening, to good music and connecting with it.

What I can’t do is shut it out, which is an ability most people take for granted. Since I came down with Lyme, this has been impossible. I remember playing John Coltrane while I wrote my college thesis, and spending tons of time in coffee shops writing and reading before I got Lyme. Now, however, I listen to music only while I’m moving to it or doing repetitive tasks like cooking. (And cooking and music is not the best combination, because I end up dancing instead of making dinner.)

Now that I am living with Lyme, my brain does one thing at a time only, and silence is essential for my well-being.

So, back at our camp at Burning Man that morning: I did not figure out how to get on the bus to Reno. I managed to get dressed, brush my teeth, and make breakfast while the multiple techno played, although all this felt like scaling a climbing wall. I had some vague thoughts about finding the bus, but it was something that would require me to pack up my things, dividing them from my boyfriend’s, and then get down to Center Camp, a place I hadn’t been yet, and navigate through the noise I imagined would be there as well, to find information on buses. This series of tasks, by no means challenges under normal circumstances, seemed impossible in the face of the EDM.

More camp members arrived Monday, and we helped them
put up their hexi-yurts while I contemplated leaving.

And so I stayed at Burning Man because my brain was too paralyzed that first day to leave. And because, despite how tormented I was, I didn't quite want to admit defeat. Not yet. To escape the little musical hell of our camp, I walked around our section of the city, in and out of zones of blasting music. I went to a figure drawing session that was in a blessed pocket of silence, and walked out into the desert for silence. Every time I came back to our tent there was the music, leaving me feeling like a deer in headlights. Still, I managed to fall asleep again Monday night.

And something utterly surprising happened Tuesday. That morning, my boyfriend coaxed me out of the state of shock for for an art tour. This was my first encounter with the Burning Man’s giant art installations. I was enchanted and moved and felt utter awe. It made sense for the first time that I’d come to this place. We rode the oversized VW bus (which, by the way, was also blasting music, but good music) until we were tired of it and decided to walk the mile back to our neighborhood, stopping to see friends from Seattle on the way.
An example of the art we saw Tuesday morning

The Totem of Confessions from inside (above) and outside (below).


An entrance to the art and activities at the base of the Man (above) and an organ created for Burning Man (below)

The stained glass ceiling from inside the Totem of Confessions, 
and a giant sculpture of a woman.

A mosaic, altar-like installation at the feet of the Man

Outside the ever-present port-a-potties, the dust was picking up

Back our camp, neighbors with assembled hexi-yurt

When we got back to our camp and the inevitable techno, I found I didn’t mind so much. I had adjusted enough that it didn’t seem worth taking the bus to Reno. I would stay at Burning Man. For the rest of the week, the EDM kept playing, but my brain managed by and large to put it in the background.

As the days passed, I encountered a few pockets of electronic music that was actually good: creative, melodious, joyful, and energetic. Music it was a pleasure to dance to, and so I danced. (This, however, was the exception.)

All dressed up on Saturday night, when they burn the Man. It was cold, so we wore our jackets.
(I'm in the middle, wearing a headdress I made, with my fellow campers Jan and Rebecca.)

I also managed to sleep around seven hours a night most of the week, but I never truly rested. How restful can sleep be under those circumstances? As the week wrapped up, a sense of just not being well crept into my body. Much as I had loved being there, had loved doing and seeing things I couldn’t have anywhere else, I needed to go home. I needed to rest.

We had to organize and dust off all our gear clothes
before we packed the car, but finally we got it done!

As we drove out of Burning Man and I heard true silence for the first time in eight days—pure, gentle, comforting silence—my body went limp. I simply could not move. Or talk, or do anything. Fortunately, my boyfriend was driving and I lolled my head against the passenger-side window. I felt the profundity of my exhaustion. I felt, finally, at peace.
The road home