Friday, May 27, 2016


I have been postponing writing about some difficult issues. These are posts I need to write, however hard. I’ve found it easier if I write in the third person. And so, bring on the alter-ego. Introducing the Princess of Lyme Disease.

The Princess, on the left, wearing a costume she made out of paper bags. 

          In the city of Seattle there lives a princess. This particular princess is fond of writing and dancing, making costumes and headdresses, and growing nasturtiums and pea-vines her garden. She likes to go out to the Century Ballroom for swing dance nights, and to the Green Lake to walk along the path with her friends or to swim with her faithful companion, Cleopatra. Mostly, however, the Princess stays at home, in a very special tower where she knows that nothing will do her harm. In the world outside her tower, things are quite different. This is because of the List of Things That Make the Princess Feel Terrible. This List is part of the spell that traps the Princess.


car exhaust
tar and asphalt fumes
adhesives, such as liquid nails used in construction, and glue guns
new construction materials, in general
paint, even the ‘non-toxic’ kind
new furniture
Sharpie markers
tap water
tap water that has been through a Brita filter
tap water that has been through the supposedly wonderful Custom Pure filter at grocery co-op
many brands of bottled water
body care products (except for one or two brands that are truly chemical-free)
cologne, perfume, and body spray
the hand soap in public bathrooms
almost all brands of laundry detergent
cleaning products, almost all brands
air fresheners
food preservatives and additives, including ‘natural flavoring’
most of the food in the United States of America, because it contains the previous items
jet fumes
the air at the airport, which is filled with jet fumes

(As per these last items, the Princess finds it extremely difficult to travel by airplane. Indeed, before she figured out the importance of securing a seat in front of the wing (the Princess always flies economy, because it’s the only way to go), so that she would not be breathing the exhaust that slips into the cabin from the engines located on the plane’s wings, the princess usually came down with splitting headaches and vomiting from airplane travel. Now she simply feels worn out, light-headed, and extremely vulnerable to panic attacks. (As for panic attacks, we will address them anon.) And so she takes an airplane trip only once or twice a year.)
Come to think of it, there is one last item on the List of Things That Make the Princess Feel Terrible:

Mold is found in:
all air conditioning
all automobile air conditioning
damp houses
old books
blue cheese

The Princess does not live in dread of blue cheese—she finds it easy enough not to buy it when she sees at the grocery co-op, and to say ‘No, thank you,’ when it is offered to her by a friend, but she does live in dread of air conditioning, and visiting other people’s houses, and driving with other people in hot weather, because of the question of air conditioning.
In general, given The List, you might say that this princess’s situation is much like the one of another princess, the Princess and the Pea. For this princess, however, the pea is not a tiny vegetable tucked under a pile of mattresses. For our Princess, almost the Entire World is her Pea. Whenever the Princess leaves her home (where she has taken great care to be sure it contains none of the things on The List) she runs the risk of coming into contact with the things on The List and feeling extremely unwell.


But who is this Princess? She was not always such a special person trapped in a tower. As a child and a teenager, she was a typical over-achieving member of the upper-middle class. She grew up in Washington, D.C., zooming her way through private elementary and high schools on her way to a prestigious, you might even say snotty, college, where she was always engaged in some sort of high-energy, creative pursuit, not to mention studying for her classes with a fervor that was a like a religion for her. She wrote poetry and spoke foreign languages; she wrote long term-papers female scientists, and magical realist novels, she played rugby; she volunteered with the homeless and taught English to immigrants, and, well—you get the picture. She had a lot of Energy and liked Going Places. When she graduated from college, she worked as a newspaper reporter in foreign lands, and fell in love with a charming young man in one of those lands, and thought she might live abroad as and lead an interesting, bi-national life.
Suddenly, however, she came under a spell and was left without the strength to walk, or stand on her two feet, or read, or some days even to watch TV. She lay in bed, sewing quilts by hand, which was the only pass-time left for her. Helpless as she was, she moved back to live with her parents’ (the King and Queen of Kindness and Equanimity). The years went by and the Princess sewed many quilts. She also went to doctor after doctor, for years—eight years—but none could lift the spell.
At last she found a doctor who, although he could not lift the spell, could name it. It was called Lyme Disease, and this doctor partially beat back the spell by giving the Princess an infinite number of magical herbs and potions. Although the Princess hoped she would be cured, alas it was not so. The spell was far too strong for even this doctor, and other doctors who she has turned to for additional advice. She still has to ingest her potions every day, at precise hours, following an infinitely complex pattern that is always shifting slightly from week to week and month to month.
If the Princess follows the advice her doctors, on most days she has the strength stand on her own two feet and walk, indeed she can run and dance, and create dancing girl costumes, and cook for herself and wash the dishes, and take care of her faithful companion, Cleopatra.
Outside the tower, with Cleopatra


But do not be mistaken. The Princess is still living under the spell which, despite all her efforts, as of now has not been broken.


At first the Princess thought she was, despite the spell, simply a woman with a chronic illness, in essence just another member of the over-achieving, upper-middle class (although now a woefully under-achieving over-achiever, due to the Spell of Lyme Disease). The Princess operated under this illusion for quite some time. Meanwhile, while she was still searching for the magical doctor, the Princess had traveled to Seattle. When she found the miraculous doctor in this far-flung city of lakes and bridges and beautiful gardens, she decided it was best that she stay there and adopt it as her home.
Unfortunately, as the Princess grew physically stronger she also became romantically involved with a man who was fond of removing the Princess’s soul and shattering it, leaving the Princess to put her soul back together as best she could. She would then hide it away from this man, until the next time the man ferreted out her soul and put his destructive hands on it—until at last the Princess found the strength to end this unhealthy relationship.
After that, she had spent several years alone, turning down the suitors who came her way for one reason or another, until she happened to meet a suitor who was kind and intelligent, and had a sweet nature. Or, to use a word that might not be as flashy as the words ‘wonderful’ and ‘amazing’ that get tossed around so much on social media these days, but a word that is perhaps more meaningful than those words, the princess found this suitor worthwhile. This man was worth the Princess's time and attention. The Princess became more and more fond of this man as the weeks of 2015 went by.


As she spent more time with her suitor, however, she found herself continually explaining to him all the tiny requirements of her life: how her food and pills and potions, and her exercise routine had to be just so, lest she come entirely under the power of the spell. She explained how, despite appearances of health and vigor, she always needed to take care of her delicate nature, including stopping everything in the middle of the afternoon to take a nap. She could not go certain places or do certain things, particularly she had to avoid things on the List of Terrible Things.
And then there was the question of mornings. The mornings were when the spell had her almost entirely in its grip, and it was very hard to do things that most people took for granted, like talking. As the words of explanation flew from the Princess’s lips, she realized that all of these things, while absolutely essential to her well-being, sounded quite princess-like.


The Princess explained that she had a good witch (a naturopath) who helped her with her magic potions, and also a woman (a lady in waiting?) who came once or twice a week to help her with the time-consuming tasks of her life, such a picking up medicine and helping out with cleaning, so that the princess could better fend off the spell every day. And also there was the most embarrassing part of the Princess’s existence, that she did not have a job—not one that earned her any money—this was something that made the Princess feel extremely self-conscious, when she met new people and they asked her about herself. Although anyone who knew her well could not see this as a shortcoming, given her burden of living under the Spell. On the other hand, she did have her ‘work,’ which was writing magical stories and taking classes in how to get better at writing these stories. (Due to her lack of a job, the Princess was on a tight budget, but she took good care of her tower and rented out rooms in it, and so she got by.)
As she explained all these things to her suitor, the Princess realized that if she sounded so much like a princess then it was likely that she was, in fact, a princess. This was quite a realization for her.
Given all her experience fighting off the spell, she also realized it was not likely she would ever have the privilege of being a normal woman again. And so she reluctantly accepted her fate of being a princess.

The Princess and her BF after a long day at a parade.


The Princess lives in a periwinkle colored house—that is, ahem, a tower. A tower which the previous owner covered in aluminum siding, which siding the princess has left intact, although she has painted it with low-toxicity paint in a very agreeable color. The tower is in a pretty little neighborhood called Wallingford, full of jubilantly-growing gardens, and where real estate prices are skyrocketing due to Jeff Bezos’s manic expansion of his company called Amazon. The Princess shares her tower with two other ladies—smart, creative, strong women who understand the spell and are considerate of the Princess’s requirements, and sometimes stop to listen to her tales of encountering People Wearing Too Much Perfume, but mostly these two women just get on with admirable their lives.


Before the Princess gets out of bed every morning, she takes some pills that replace parts of her endocrine system, which the Spell of Lyme Disease has permanently damaged, she waits twenty minutes, then gets up and goes for a short walk with her faithful companion, Cleopatra. On the walk she reminds her self that this is the worst part of the day and that she will feel better soon. She does deep breathing. When she is back home, she slices up an apple and makes herself a cup of coffee and sits down at her computer to write her stories. She takes a break for a walk and lunch, and then she takes her nap. After her nap she works again—either at her stories, or taking care of her tower or her healthcare—seeing her doctor, paying bills, organizing her potions, answering emails, or preparing her special food. At about 5 pm she does her exercise: swimming, running, or dancing.
Throughout the day, the Princess takes her potions—some on an empty stomach, some after her meals, some when she lies down to sleep. The Princess thinks a lot about her potions and pills, partly because they are so complicated that she has to always be paying attention in order to take everything at the right time. But she also thinks things like, who am I? Am I myself, the Princess, or am I this compilation of endocrine supplements, hibiscus flower tea, B vitamins and little pills called Heart Gems? And if these things suddenly are no longer available, then what?
But it is no use worrying about such things.  For now she is grateful for the potions. Although they have not cured her or freed her from her tower or naps or the List, they have at least freed her from lying in bed all day.

There were times when her doctors, despite their best efforts, gave the Princess the wrong powders and pills—times when her hair got so thin she could see her scalp, or she lost far too much weight, or felt so sad that she had to sing songs to herself in order find the will power to simply get up. There was also a time when the Princess tried stopping all her potions, and the results were also extremely unpleasant. Now she feels that the potions, though more complicated than she would like, are doing a good job.
All in all, it is a beautiful life the Princess leads. Relative to how she has felt in the past, relative to other people she knows who are suffering under similar spells, the Princess realizes she is fortunate. That is, as long as she follows her routine and stays in her tower, occasionally leaving to visit the places she knows are safe for her, places where she is not likely to encounter anything on The List.

            The next post will be about chemical sensitivity, or The List of Things That Make the Princess Feel Terrible.

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.