ONCE UPON A TIME

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.

THE LIST OF THINGS THAT MAKE THE PRINCESS FEEL TERRIBLE:

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

sugar

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!

Mold is found in:

basements

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.

THE PRINCESS’S BACKSTORY

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

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.

COMING TO TERMS WITH BEING A PRINCESS

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.


A SUDDEN PERSPECTIVE

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.

MORE THINGS THE PRINCESS HAD TO EXPLAIN

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’S TOWER

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.

THE DAILY ROUTINE OF A PRINCESS

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.