Friday, December 9, 2016


Note: This post is about what it's like to start a relationship when you have a complex chronic illness.(For more practical posts about medication, etc, look at the word cloud on the right.)  In the spirit of previous posts, I'm am writing about my alter-ego, the Princess. Let's call her the Chronic Princess for good measure.

I found this very nice definition on Wikipedia:
Alter-ego (literary): "a fictional character whose behavior, speech or thoughts intentionally represent those of the author" 
In a world of nimbus clouds and Rainbows,
the Chronic Princess longed for love

Once upon a time in Seattle, there was a Princess who lived under a Nasty Spell. She had been under this spell almost her entire adult life. When was twenty-six, she had fallen down suddenly, and could not get up again. For the next ten years, the Princess felt as if she weighed five thousand pounds (when, according to any scale, she still weighed one hundred and twenty-five), it was only with tremendous effort that she could get out of bed, and she could not think well enough to read or write (which was her profession). Although crushed beneath this invisible weight, she often could not sleep, had terrible headaches, and loud noises were agony to her.
Year after year, the Princess and her mother searched the country for a Witch or a Magician who could counteract the Spell. At long last, they found both a Magician and Good Medical Witch who understood how to fight the Nasty Spell, and these two Magical Experts worked with the Princess to undo the spell as best they could. For four years, with the Princess working night and day, they fought the Spell off well enough that the Princess could now get out of bed with ease. She could walk around as if it were normal, and even go for runs, and read and write, and do so many other things she couldn’t do before that, such as grocery shopping and washing the dishes—things that are so very wonderful if they have been impossible for more than ten years.
 However, the Spell was not entirely gone. The Princess still needed to take magical pills and potions eight or nine times a day, and to eat magical food, to rest often, to do special exercises…. and on the list went, adding up to a Hundred Magical Things Each Day, and yet it was worth it.

And yet it was worth it, because
now the Princess could write!

And because now the 
Princess could dance!
Let's make that a Hundred and One Things, because the Princess needed to avoid being around the Evil Substances that are generally called chemicals—being in the presence of cologne or perfume, or hair spray or fresh paint—all these things took a toll on the Princess’s weakened body, and could make the Princess fall back under the Spell. As a result, the Princess spent most of her time in her Tower and her garden, where she allowed no chemicals. When she left the Tower, she went places where she knew she would be well, such as the organic co-op, and the Century Ballroom.
In all of this, years had passed. Sixteen, to be precise. By the time she was forty-two, the Princess was living quite happily in her Tower, with her dog Cleopatra, and her roommate and her basement tenant—smart, generous, funny women who were good company and helped the Princess pay the mortgage on the Tower. She also had dear friends in her neighborhood, and her writing was going very well. And yet the Princess felt lonely from time to time, and this is where our story begins.

The Tower
(looks suspiciously like a house!)

Is it March of 2015, a sunny afternoon, and the Princess is standing on the front porch of the Tower. It is unseasonably warm, and the golden sunlight is shining down on her and her friend Deepa, and the two women are discussing the Princess’s plans to go Speed Dating that night. In fact, Deepa is giving the Princess a pep talk, because the Princess is nervous. Like anyone else, she would like to find love—at times she even longs for it—and yet she is afraid that the Spell, being so cumbersome and complicated, will be a big problem. Men do not shy away from her initially (when she is out dancing, quite a few men ask her on dates), because the Spell is invisible, but once a man expresses interest in the Princess and wants to spend time with her, she knows she will have to explain the Spell, all the things she can’t do, and can’t eat, and all the magical food, the other hand that she has to eat... it was all so very Chronic. Not to mention she does not have a job besides her writing (which scarcely pays her anything at all) and she will also need to ask him if he would please never wear cologne, and on and on…. In short, the Hundred Magical Things will become a big drag.

Magical Foods
But Deepa is wonderful at boosting the Princess’s confidence, telling her she has a lot going for her, and many men would be psyched to be with her, she has a happy disposition and kind spirit, and in addition is a creative person, which many men find very attractive. Deepa tells the Princess everyone feels insecure about something when they date. She shouldn’t worry too much. 
And so the Chronic Princess, feeling pepped-up, went Speed Dating. She did up her hair and put on her best jeans and a sparkly top, and that night she met a man who was very charming, and had many interests in common with the Princess. Let’s call this man the Groovy Squire.
The Groovy Squire also lived in Seattle, on the other side of the bridge in a neighborhood next to Capitol Hill, called Squire Park (a real place: look it up if you don’t believe me). In the five minutes the Princess was allotted to talk to the Squire during their Speed Date, he told her he earned his living by designing palaces for people, and the thing he cared most about was creativity. He painted pictures, and made costumes for the summer Solstice Parade.

A Parade headdress the Princess made from recycled necklaces
and fabrics-- work in progress (above), and finished (below)

Now this was a great coincidence because the Princess always danced in the Solstice Parade, with her samba troupe. (The Solstice Parade was for Seattle, like Carnaval for Brazil—half the city came out to watch it, everyone cheering and dressed up and jubilant.) The Princess put the Squire's name down on the Speed Dating website as a potential match. A day later he emailed her, asking her if she would like to see him again.
Soon the two were dating, and feeling wonderfully happy in each other’s company. Not to mention, the Groovy Squire did not wear cologne, and was into non-toxic cleaning products, and was generally an earthy-crunchy co-op shopper, and this made things very easy for the Princess.

The Squire liked to hike, and she decided, that May, to take a giant risk by leaving her Tower for a full day in order to go hiking up a mountain with him. She had to pack all her counter spells and potions in her backpack, her magical foods and magical pills, and felt very nervous lest anything go wrong. She was particularly worried about whether she would be able to rest while they were on the hike—the Princess could sometimes be suddenly hit by exhaustion when she didn’t expect it, and always after several hours of anything, she needed to lie down and rest. But the Squire was so kind and understanding towards the Princess in general that she thought things just might be OK, even if something went wrong. She told him it was a risk, and he said not to worry, he would help her if necessary.

Taking a nap on hike

But in fact, the hike went well. The mountain was beautiful and she found it very easy to stop and find a place to lie down and close her eyes when she needed to, on the side of the trail. When the Princess got up from her nap on the mountain, the Squire asked if he could call her his girlfriend, and she said yes, and that she would call him her boyfriend. Very happily, the Princess had discovered hiking was one more thing she could do and enjoy, despite the Nasty Spell, and she went hiking with the Squire many times after that.

Cleo goes hiking, too! Spring 2016

 The Squire was very good at logistics and equipment, such as pitching tents and stringing up outdoor lights, and he helped the Princess when she threw parties at her Tower, which she did from time to time, to raise funds for her dance troupe and for a refugee center, run by a friend of the Princess’s, in the Middle East. The Princess would ask people to donate artwork or desserts and she would raffle them off at the party in return for donations to the cause, and she found she could raise quite a bit of money this way. The Squire helped out, making decorations and helping organize everything beforehand.
The Princess's magical pills, organized for the week.

In addition, together the two made costumes for Solstice Parade, and went to museums, and cooked, and even—although it was very Big Deal for the Princess—went on a few trips away from the city. These trips were a strain for the Princess, but in the end worth it, in no small part because the Groovy Squire was so very patient and gentle with her. Despite the Hundred Magical Things Each Day, which she had to pack up wherever she went, despite her nervousness about the Spell and how much worse it could get when she travelled, and despite her self-consciousness about needing to have everything just so, and to needing to constantly explain to the Squire all the requirements of her daily life—despite it all, the Squire was unwavering. He said how happy he was to be with the Princess, and they had a lovely time.

Indeed, the Squire often said to the Princess that he didn’t mind about the Spell at all—only to the extent that he saw how it hurt the Princess, but apart from that, he told the Princess she was so nice to around that it didn’t mean anything to him that they might have to spend extra time packing her special things into the car when they went away for a weekend, or that he might have to wait while she took a nap or did her exercises.

As the months went by, the Princess came to trust the Groovy Squire more and more. One of the things the Princess liked about the Squire was that he did not, as other men had, think of her as only Someone Trapped in a Spell. She spoke about the Spell when she needed to, but mostly they spoke of other things. She did, however, make it clear to the Groovy Squire that it was a Chronic Nasty Spell, and the most she could hope for was a tiny bit more freedom from it, from time to time, but never to be truly free, unless there were some very large advances in magic—something that no one who had any sense would ever counted on. 

The Princess knew from experience she needed to be clear with the Squire about what she could and could not do under the Spell, but also she was wary of talking about it too much, because once the subject was open it could become endless, and she ran the risk of the Squire thinking of her only as helpless. On top of that was the risk of talking about a Downer Topic far too much, until the Princess herself could start to feel down. A balance had to be struck, and the Princess did her best to stick to what she thought was the right balance, above all one that made her feel OK. Because otherwise, if having a boyfriend made her feel worse about the Spell, what was the point of having a boyfriend after all?
(And to all you normal people out there reading this, if the above paragraph seems obsessive—well, actually, these are the types of things people under Nasty Spells fret about. The Princess has a good friend, let’s call her the Duchess of Ravenna, who also lives under a Spell, and whose daughter, unfortunately, lives under a different, equally difficult black magic. The Duchess and the Princess go for long walks and discuss whether they should mention to their husbands and boyfriends the constant disagreeable sensations and symptoms they live with, or not. If they mention these things, they are in fact, complaining, which as a result would make the Duchess and the Princess unhappy, and also the people around them unhappy. However if they don’t mention these things, the people around them have no idea different life is for the Princess and the Duchess, and then expect them to act like normal human beings, something that is impossible.

The Princess's friends the Duchess and daughter enjoy a moment 
of orange and upside-down-ness on the Princess's Tippy Chair

The Princess, for her part, tries to avoid complaining at all costs, even to herself. When she feels overcome by the Spell, and cannot sleep, or think straight, or needs to lie down and do nothing but feel awful, she simply tells herself this is the nature of Nasty Spells, that they aren’t called Nasty for nothing, and she simply has to accept whatever unpleasantness has come her way.)
And so the year 2015 came to a close, and the year 2016 began.

2016 was not such a wonderful year for the Princess. She had some setbacks with her writing career, which her agent told her were temporary, and yet it took mental fortitude to keep writing. She did, though, because she is a writer and writers must write lest they shrivel up and die. She also learned an old friend of hers was now Fighting a Dragon (translation: cancer), and this made her sad and worried. Also, the Spell, instead of weakening as it had in 2015, grew stronger and stronger. There were plenty of days when Princess was not feeling well, some days when she felt as if she weighed five thousand pounds again...

At times she felt like the person in Goya's painting

.... and days when she woke up and got out of bed that her body and brain ached, and it seemed that hidden in the sunshine of the summer mornings were cruel beasts, trolls and harpies, whispering vile things to her. 

But the Princess was, above all, scrappy, and she forged on through the mornings, and after an hour or two, as she took the first several steps of her routine of the Hundred Magical Things, and took care of Cleopatra, and then sat down to write, the malicious beasts fell silent.

Practicing for the next Solstice Parade

 That summer, sometimes things were great, sometimes they were very unpleasant.

Why had the Spell had grown Nastier? There probably many reasons. A very likely one was the little trips the Princess took with the Squire, exposing to her to too many Toxic Things, such as car exhaust on the highway, and Toxic Cleaning Products in the places they stayed. These things, in miniscule amounts on rare occasions, might be OK, but as the Princess was careless and exposed herself to more of these things, she inevitably grew worse.
In addition, the Princess’s basement tenant—called Downstairs Rachel—made the mistake of buying laundry detergent that was labeled with such words and “Natural” and “Gentle” and “Eco-Friendly” when in fact these detergents were anything but what the label said.

FAKE FAKE FAKE! Will make you sick
if you have Chemical Sensitivity!

Downstairs Rachel one day did laundry all day long, filling the house with the smell of the detergent, making the Princess sick. When the Princess read the tiny writing on the back of the detergent bottle, she saw it was full of exactly the harsh chemicals that helped the Spell get the upper hand. But downstairs Rachel, immediately seeing her mistake, took the bottle of safe detergent the Princess gave her, and got rid of the nasty stuff.
Also FAKE! Full of
Noxious Chemicals
The Squire also bought a similar detergent by accident, and had washed sheets in it that he packed when they went on one of their trips, and so the Princess had spent a night exposed again to these Toxic Substances (when she realized what had happened, she pushed the sheets aside, and covered herself with her coat, but seeing as there was nowhere else to sleep and she wasn’t thinking clearly, she simply tried to sleep with the noxious chemical scent around her), and she grew even weaker.

These problems were corrected, and yet the Princess felt sick again because a block away people were building a giant building, using paint and adhesives and laying down asphalt. She choked on the fumes in the air.
 She couldn't help but think—is life really this niggly and complicated? Are there traps everywhere for me? Am I crazy?

All this stuff, about laying down asphalt a block away, and the sheets and the fine print on the detergent bottle, it’s enough for someone to ask the question, is she crazy? 
Things that were tiny to everyone else were huge monsters for her, and can you blame her if she walked through the world wondering if this could really be reality—that is to say, real reality, vs. her personal reality? Or better put, could her own personal reality exist as a valid microcosm inside of the larger reality, which was clearly different for everyone else around her? 
How could she be getting sick from these things when the Groovy Squire, lying next to her on the same sheets, was perfectly fine, and Downstairs Rachel was as peppy as ever? And there was someone jogging by breathing in the fumes that were making the Princess feel as if she might die? Was it then all in her head? 
Edvard Munch's famous painting
            The answer was no, it was not in her head. Both the Magician and the Medical Witch had run diagnostic tests that showed the Princess’s liver, which was determined by her genes, did not work the same way other people’s livers did. It did not work very well at all. In medical terms, it was a crap liver. This meant that when the Nasty Spell had come along she had been predisposed to getting trapped in it. She was an outlier, that person for whom things are different. Like it or not, she was stuck being a Princess, and the world of modern chemicals was her Pea. The devil was, in fact, in the fine print on a detergent bottle.
            Now let’s get on with the story, which is about the Princess and True Love.

Despite throwing away the devilish detergent, the Princess continued to have very bad days, going through Neurological Episodes that were very, very, very, very, very challenging for her. Her hands shook and her teeth chattered, tears poured from her eyes and her brain felt like it was on fire. She stayed in her Tower more, rested more, had many appointments with her Wise Medical Witch, and still the Spell grew Nastier.
She rested and rested, but did not get better
Now the Squire never asked if the Princess was crazy. He knew by some good instinct that she wasn’t, and he respected her, and recognized her as a Princess. And yet, the Chronic Princess did all she could to stay away from the Squire when she was at her worst—she did not want him to see her in this state, with her hands shaking and her brain on fire, lest it grow tiresome for him.
She tried a few times to explain, without complaining too much, what she went through, but he did not seem to understand thoroughly the depths of her symptoms, and, given her reservations about downer topics, she decided that on the whole it was better if she was alone when she faced the worst of it. She was, after all, used to that.

By the summer, the Princess realized part of her problem was something she had no control over: the Evil Sorcerer. Yes, there was an Evil Sorcerer in Seattle, by the name of Jeff Bezos. He had a laboratory was in downtown Seattle, and a plan to Take Over the World. As part of his plan, the E.S. was hiring more and more assistants—by the tens of thousands!—which in turn was causing a real estate boom in Seattle, since the assistants all needed places to live. All around the Princess’s Tower, there were giant condos and monstrous houses being built at a furious rate, activities that put swamps of poisonous fumes into the air, such a paint, solvents, floor varnish, and tarring.

The Evil Sorcerer

Seattle these days

Yes, normal people are perhaps OK with these things, but as we have established, the Princess was not a normal person, and with four construction projects on her block, and several more behemoth ones in her neighborhood, the air outside her Tower was making her sick—not always but at odd hours, suddenly and unexpectedly, depending on what chemical substance nearby workers were using. It was hard to know what to do.
And yet in all of this, there was the Squire, who kept showing up, and telling the Princess he loved her, and being kind to her, and doing things with that helped her feel better, such as going to the lake and swimming, or going on long walks, or helping the Princess make her costume for the Parade, which rolled around again that June. These were lovely times, especially the day of the Parade.

Parade Day, 2016 (Princess on Right)

 Cleo swims with the Princess, and photos from camping on the Olympic Peninsula

As the Princess’s neighborhood grew worse, she stayed at the Squire’s house for a month, and they planned a vacation so that Princess would not be exposed to toxic fumes. They drove to the wilderness of Olympic Peninsula and stayed in a tent, and spent each day hiking on remote trails and taking in beautiful scenery. That trip was very special to the Princess, because she had never done anything like it before, and she was very happy to be sharing it with the Squire.
The Squire said many things that, despite the Princess’s worry about the Spell, made it clear he still loved her very much, and when it came to the Spell, he said often he admired how brave and creative she was about living under it, how he liked that she managed to be happy despite everything, and he was happy, too.
She sometimes felt frustrated he didn’t understand what she actually experienced during the Neurological Episodes, but she reasoned, it must be so far from anything he has been through in his life that he couldn’t imagine it. It just seemed so very hard, almost impossible, get the words out and say them in the right way that he would understand. There were moments when it seemed he understood, but then the next day he would seem to not understand—he understood she was sick, but not what that actually meant, how when her hands shook and her brain felt like it was on fire, the most worm-like, internet-troll-like thoughts poured through the Princess’s head.  

These types of depressive thoughts were due to the above-mentioned crappiness of Princess’s liver, which in turn caused a neurological reaction as the chemicals entered her nervous system, as the Medical Witch and another scientist friend explained to the Princess. 

(In much the way people say ‘depression is a chemical imbalance,’ so exposure to toxins created this acute kind of depression in the Princess. It might not seem to make sense, but consider that LSD, which has profound effects on the brain for hours, is measures in millionths of a gram, and that people inhale many substances deliberately, with just a couple of tokes changing how they feel. It's not that difficult to believe that the Chronic Princess, inhaling chemicals in the air around her house all day, might go on a bad trip, so to speak.) 

Well, if the Squire didn’t seem to understand this easily, she decided it was best not to burden him with it. What was the point? It was more important to put her efforts into getting better.
On the advice of the Good Medical Witch, the Princess added three more magical potions to her routine, to counteract the toxic fumes created by the Evil Sorcerer. The potions helped her liver, but made the Princess dizzy, so that it was hard to write. She told herself these things were temporary, and she carried scrappily on.
As the summer days shortened and cooled towards fall, she did, in fact, feel a little stronger. Many of the construction projects next to the Tower wrapped up. The Princess invited neighbors over for a barbecue, she laughed with her friends, and when it turned out Cleopatra, the dog, had a terrible case of fleas, she and the Groovy Squire and her roommates all pitched in to take care of the problem, laughing as much as they could through endless rounds of dog washing and vacuuming and internet research on non-toxic methods of killing fleas.
Cleo gets a flea bath

One day, the day they declared the fleas were all gone, the Princess thanked the Squire for his help. He smiled and took the Princess in his arms and told her he liked to think of her as his Partner. And when she said, “but—” he said he hoped someday soon they might call each other that, because Partners helped each other through the bad times (such as fleas) as well as the fun times (such as throwing parties).  
Will the Squire walk his talk?
The Princess felt touched, but also a bit skeptical. The Squire from time to time said things like this. However, as the Princess told him, with a gentle laugh, “I don’t think you can be my Partner if we’re not living under the same roof,” and he said that might be true, but it was how he felt.
Later, she said, “I’m sorry, I didn’t mean to brush you off, when you said that thing about Partners.”
“That’s OK,” he said, “I realize it wasn’t good bring it up that way, it’s a separate conversation.”
“Yes,” she said. But for some reason, like someone’s phone ringing just at that moment, they didn’t have the conversation that day.

To be continued....

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