MORE COMING SOON

In my last blog posts, in December, I promised an update on the blog's favorite heroine, the Chronic Princess. Unfortunately, that post isn't here yet...but in the meantime, who doesn't love a good podcast? I have recently become a big fan of Reply All. Sruthi Pinnamaneni is an excellent reporter, and she'd done some very good posts on illness and medicine. Below are links to episodes that feature her stories. What stood out for me in first one (Second Language) is the journey of acceptance. The second one  (Boy Wonder) has quite a few parallels for Lyme patients who have suffered through mis-diagnosis and late-diagnosis. At the end, a Yale doctor, Lisa Sanders, speaks intelligently and unconventionally about the difficulties of diagnosis. Thank you, Dr. Sanders, for speaking to us all like we're adults!

https://gimletmedia.com/episode/88-second-language/

https://gimletmedia.com/episode/75-boy-wonder/

HAS THE PRINCESS FOUND TRUE LOVE? Part 2

The Princess and a smidge of the Squire. This 
was the first hike they took together. Right 
after they snapped this photo, the Princess
 had to take a magic pill, and the Squire 
asked the Princess a few questions about 
the Spell. She explained about some 
of her magic pills, and that she would 

be trapped in the Spell her whole life.

In Part 1, the Chronic Princess, living under a Nasty Spell, longed for true love. Although life under the Spell was very complicated, and she was afraid of rejection, she went Speed Dating, and met the Groovy Squire, who slowly but surely won her love and her trust. For the first year, the Princess was very happy, but by the second summer of their relationship, the Princess was having a hard time, becoming ever more trapped under the Spell.

This was largely the fault of the Evil Sorcerer Jeff Bezos, who was plotting to Take Over the World, and had filled the air in Seattle with traffic and construction fumes. This made the Princess weak even while walking around her own neighborhood. The fumes and the Spell combined to make her suffer Neurological Episodes, when her hands shook and she felt her brain was on fire. The Squire continued to support the Chronic Princess through this difficult time, taking her on a beautiful camping trip where the air was clear. Although at times she felt he did not entirely understand the extent of her suffering, she cherished the Groovy Squire’s unfailing kindness and affection.

Cleo gets a flea bath

And—oh yes, the dog Cleopatra had a bad case of the fleas. The Squire helped out. 

At the end of Part 1, the Squire has told the Princess he wants to be her partner, to be with her in the good times (hiking and camping) and the bad (fleas). The Princess is touched, but also skeptical, due to the following backstory:

NUANCES OF THE BACK STORY, INCLUDING LIVING ARRANGEMENTS

Not long after the Groovy Squire and Chronic Princess met, she asked him what he was hoping for in a relationship—not with her specifically, which would have been far too forward at that early stage, but in general. They had met Speed Dating instead of Internet Dating, so there had not been any long questionnaire of boxes to check, such as: 

• casual 
• leisurely
• head-long-up-in-flames
• friends plus activities
• secondary
• tertiary 
• not-open-but-not-closed  
• short-term
• long-term until something goes wrong
• long-term-in-separate-houses-but-owning-the-same-cat
• long-term-eventually-living-together

Such lists being found on most online dating websites. The Princess, having a practical streak, wanted to be sure she and Squire were at least hoping for same thing, romance-wise. The Squire said he hoped to eventually find a long-term-living-together-committed relationship, with no desire for cats and with no additional children (the Squire was older than the Princess and his children were grown, the Princess could not have any children due to the Spell). The Princess told the Squire she was looking for the same thing, so this was good.

their feet

Flowers in the Tower's garden

Not too long after, in the Summer of 2015, the Squire told the Princess he loved her, and she, overcome with emotion, told him she loved him too. In the Fall of 2015, the Squire began dropping hints to her, such as ‘I’d like to live in your neighborhood, it seems like such a nice place to be,’ and, “it would be so wonderful to live at your house, and if I did, I could help you more with your trees and your garden.” 

He had looked into buying an old-run down palace around the corner from the Princess, as an investment, the type of palace that needs remodeling (as was all the rage in the neighborhood, as previously mentioned).

When the Princess asked, “Well, what if, in the worst case, things don’t work out between us, would you want to own a palace so close by?”

The type of old house in the Princess's
neighborhood the Squire almost bought,
but didn't. 

The Squire said, “I’m not worried about that at all.”

But the real-estate prices in Princess’s neighborhood were now ridiculous (the Princess’s taxes were going up and up) and so the Squire hadn’t bought the fixer-upper palace after all, and he had seemed disappointed.  

That December, the Princess’s roommate, the Lady Christiana, was thinking of finding her own place, and so the Princess, asked the Squire if he would like to live with her once Lady C moved out. 

The Squire at first said he needed to think it over. Soon, he told the Princess would like to live with her eventually, but he couldn’t yet, because his work required him to stay in his own little palace, where he also had his office, and where soon he would add apartments to the building, as an investment. (Yes, if you hadn’t noticed, the Squire was also caught up in the real estate craze.) He needed to be on hand to supervise construction, he explained. The Princess, having remodeled her own Tower, knew it was invaluable to have someone living on site, because inevitably problems and questions came up, and they came up at odd hours.

hmmmmmmmmm

Not to mention that in the days before and after the Squire told her this, he showered her with affection, more than he ever had, and so the Princess did not doubt that he continued to love her. The Princess told the Squire she understood about his not moving in. She also thought to herself that until the Squire moved in with her, his talk about having a commitment or a life with her, a long-term, living-together relationship—well, it was only talk and she tried not get too swept up in it. 

She saw that the Squire was someone who clearly felt very romantically towards her on one hand, but also moved slowly on these questions. Although it had been many years ago, he had been through a bad divorce, the Princess knew. And so his hesitancy was understandable. People have mixed emotions, especially when it comes to romantic love. We want things, and yet we feel hesitant. There is hope and there is baggage. Baggage takes time, the Princess thought. She wasn't in a rush.

Baggage slows you down!

The Lady Christiana, on the other hand, decided not to move out after all, which made the Princess happy, since the Princess was a big fan of the Lady Christiana’s and they got along well. So the question of whether the Squire lived with the Princess was postponed. Months and more months passed, the Squire came to visit often enough that the Princess felt very close to him. Everything was at a good balance, sleeping-arrangements-wise. At some point, the Princess knew, when the Lady Christiana would be ready to move out for real, the question of the Squire living in the Tower would come up again, and she might have to apply pressure. But for now, she tucked her skepticism into a corner.

One day that fall, after the air around the Tower had cleared, and the fleas were killed and the Princess was feeling happy and strong again, the Squire, who had been away a with his daughter for a few days, came back to Seattle. Although it was late and he had been driving for a long time, he came straight to the Princess’s Tower and told her he felt the Tower was his home, and this made the Princess happy.

 

The Tower from the back yard

COUNTING OUT SPARKLY BLESSINGS

And so, despite all her troubles that year, the Princess took comfort from a few things: that she still had her writing and her dancing, and her friends, and the Squire was proving to be such a kind, affectionate, caring boyfriend. She still felt very lucky. If the Groovy Squire had some small flaws, such as not quite getting how very devoted the Princess was to her writing and forgetting details about what she was writing and when (although she told him these things often), such as never remembering that the Princess always went to Samba dance on Monday nights, such as not quite understanding the darkest side of the Spell even though the Princess had attempted often to explain—well, she thought on the whole these were small things. She had her own flaws, she knew, and he was more than patient with them. No one is ever perfect.

ON THE SUBJECT OF MOJO AND WHAT IT MEANS TO BE A PRINCESS

         

Fall on the Princess's block

   Early fall turned to late fall. The leaves were golden and red, and the Princess seemed to have put the Neurological Episodes behind her. She no longer needed the extra magic pills, she felt less dizzy, and more herself. You might say she had found her mojo again. Now it just so happened that an opportunity came for her to use some that mojo.

(This was a good plan. Mojo, if you don’t use it, will shrivel and die, but if you do use it, it will grow.)

Her friend Amanda, who ran the center for Syrian refugees, was visiting Seattle, and had asked if the Princess could help her connect to people. The Princess decided to give a party for Amanda, to help her raise funds and make connections. It was true that the party would temporarily tire the Princess out, but she was also concerned about refugees, and the general political climate (it was October of 2016, and there was an Ogre stomping around the country. Although no one imagined that Ogre could become President, the vile things the Ogre said at a furious rate, including about refugees, horrified the Princess).

“Yes, I will be tired for two or three days after the party, but what does that matter, compared to what good it will do?" the Princess thought. 

Refugees needing help, photo from CRP refugee center

For all that the Princess struggled with the Spell, she also knew, in the big picture, that she was a Princess, meaning she was lucky enough to have the magical pills and potions she needed to fend off the Spell, and to eat the magical foods that made her feel well, not to mention the fact that she had a roof over head and lived in a largely peaceful country. Many other people in the world, whether under Spells or not, were not nearly so privileged. Who was she to decide not to give a fundraising party because she might be tired for three whole days?

The Princess threw the party, she made flyers and sent emails and spent time of social media promoting the party. There was a bigger turnout than the Princess had hoped, and Amanda gave an inspiring talk, leaving everyone feeling good for a change, instead of annoyed at the Ogre who was stomping his way around the country. 

The Squire had been, as usual, wonderfully helpful, perhaps more helpful than he had ever been. When the night was over, they counted the donations and gave them to Amanda, and said goodbye to their friend. Then the Squire took the Princess in his arms and said more things to her about how much he loved her, and she also felt how much she loved him, too. She felt very grateful for him.

            The Princess went to bed late, then didn’t sleep well. That Nasty Old Spell, that kept her from sleeping from time to time. Not a big deal. She got up the next morning, tired as was to be expected. As she took Cleo on her morning walk, she saw there was a painter outside the house next door, preparing to paint. 

It would make the Princess feel terrible

She was sure to have another Neurological Episode if she stayed in her house. 

The Princess rushed to her car and drove away to the Co-op, where she bought an apple to eat for breakfast, and did her work in the seating area. The air there was cleaner, but it was difficult to close her eyes and rest when she needed to (it’s hard to rest sitting at an outdoor table). When she saw her friends and roommates that afternoon, everyone was talking about the Ogre, who had bragged about assaulting women. All the women the Princess knew, including herself, were very shaken.

She went through her day having a series of mishaps, such as her battery dying. Things that are small, but when you are tired can make you even more tired.

THE GIANT QUESTION

Meanwhile, the Princess was worried about what was becoming a Giant Question: could she keep living in the Tower, if living there was no longer restful, if living there made the Spell get Nastier? She had poured money and energy into remodeling the Tower and making it healthy, including a special HVAC system, and sealing the basement foundation to prevent mold; she has spent extra money on special paint and floor sealants that wouldn’t make her sick, and still she had become very weak during the remodeling, back in 2013.

Now she worried that, given the Evil Sorcerer, the construction in her neighborhood, although better these past few weeks, could go on and on for years. She had not crystal ball to show her if this were so. She longed for a crystal ball. 

The Problem with Air in Seattle, vs Flowers
in the Tower's Backyard. What to do?

But she told herself not to worry, as she walked back to the Tower (leaving her car in the spot where the battery had died). In time she would figure things out. Not to mention the Squire was always helpful in this area.

The next day, saw to her relief her neighbor had finished painting, and she set about dealing with the car battery and doing all the chores that she had neglected while she was planning the party. She was still tired from the Party, but not as profoundly tired as before. Then she called her mother, who lived in Washington, DC.

Her Parents' palace in DC (the middle palace on the block)

The Princess’s mother was very dear to her, as she had helped her through the worst years of the Spell, and the palace where her parents lived always meant home to the Princess in the deepest sense of the word. The Princess had lived there for years when she was trapped entirely by the Nasty Spell, and she still went back to recover her strength, in order to keep fighting the Spell day and night as she must. Her parents, it almost goes without saying, never brought any Toxic Chemicals into their palace.

MORE ABOUT HER HOME IN DC

Logistically speaking—given the aforementioned Giant Question about the Tower, and the fact that the Squire was about to start construction on his own residence—well, it all came down to this: her parents’ palace in DC was one place left in the world where the Princess could go and know she would not grow weaker from the Spell and not have Neurological Episodes. Yes, she would have to get on airplane, and that was always exhausting, but she could go there if she needed to.

 It just so happened however, that in that phone call, two days after the party, the Princess’s mother had some news. She and the Princess’s father would soon be moving out of their palace in Washington. They would give it over to the Princess’s brother, and so keep the palace in the family, her mother said. The Princess’s brother and his wife had two wonderful children; everyone knew they needed more spaced and would make good use the palace.

And this was all well and fine, but can you blame the Princess when she immediately thought: Will there be anywhere in the world left that is safe for me? Where will I live if I am entirely trapped by the Spell again? Too upset to keep talking, she told her mother she needed to hang up the phone. She hung up. 

She felt as lost as she had ever felt in her life.

The Squire called. 

WHAT’S UP WITH THESE PHONE CALLS?

Now the Princess was not in the habit of blurting her raw emotions out to Squire. Perhaps it was because she had been alone for so many years, and having lived under the Spell for years, she could be very stoic. 

Could she open up to him?

Perhaps it was also because the Princess had some of her own baggage, making it hard to show her emotions. But we have seen how little by little she had opened up to the Squire, and how slowly she had come to trust him. 

So the Princess told her boyfriend how lost she felt. She was in tears, he seemed to listen, but then he said a series of things that made the Princess realize he did not understand at all. Such as, if the Princess couldn’t stay with her parents anymore, she could always get a on a plane and fly instead to Hawaii—although this of course involved a very long flight and staying in a hotel or other such place guaranteed to make the Princess sick.

Exactly what the Princess couldn't do

He also suggested she find a new Medical Witch. Didn’t the Squire know she had spent eight years searching for the Medical Witch she now had? She knew she'd told him that. Hadn’t she also told him this type of magic was extremely complicated and specialized? Did he expect her to spend years searching for a new Witch, going through the trials and errors of magic (i.e. getting trapped in the Spell again and then beating it back) all in order see if whatever new Witch she found was any good? 

But at least he understood she was upset and he was trying help. She told him this, and said she needed to rest. She hung up.

As we have said, the Princess had often noticed how forgetful the Squire could be about certain things, and she had accepted it, but now as she made her magical dinner of kale salad and organic sprouts, she thought:

“If the Squire is going to be my one True Love, it is my responsibility to ask him to pay more attention, especially when the subject is important to me. The Squire is such a good person, I’m sure if I talk to him gently, and tell him more clearly how important it is to me to feel understood, he’ll listen and understand me better.”

She sent the Squire a text message, saying she wanted to talk to clear up the misunderstandings. She included lots of heart emojis to reassure the Squire (he liked heart emojis).  💖💗💞👫💕💟

He texted back that he wanted very much to talk and he would come to her Tower the next evening to talk. 

AN EMOTIONAL RISK

The next evening, the Princess and the Squire sat down at her kitchen table, and she explained to him, very gently, things she knew she had explained before, but always only in short bursts, because the Squire (being more visually creative and less verbal than the Princess) was not one for long, detailed stories. But now the Princess must face the topic head-on, as nervous as it made her. 

She explained, and he listened, and it seemed that all those times before when the Princess had explained her symptoms and her illness to the Squire had somehow, mysteriously, scarcely happened at all. At least, for the Squire they had turned into a haze. He said things about her illness and that made her think he hadn’t every been paying too much attention. This was unsettling, to say the least, but the Princess pressed on, while remaining as kind and gentle as possible.

She sometimes felt this way, due to
the Nasty Spell
('El sueno de la razon produce
monstruos' by Goya)

She needed, once and for all, to tell the Squire how very terrible her Neurological Episodes were, so he wouldn’t keep saying things to her like, “just hop on a plane and go to Hawaii,” or “maybe you could remodel another house.”

She explained in detail everything she felt, the strange and disturbing things that happened in her body and her brain. She felt extremely vulnerable, telling the Squire what it really felt like to be inside a Neurological Episode, how frightening and disorienting it was.

She had to connect back to those sensations a bit as she explained them, and her fear spilled over into the unwelcome thought that the Squire might tell her she was crazy. She felt as though she had climbed out to the very end of a tree limb, and was now balancing up in the air, on her tippy toes, on a very slender branch. 

'Small Tree in Late Autumn' by Egon Schiele

Still, the Squire seemed confused.

Not knowing what else to say, the Princess acknowledged the Spell had grown stronger from when they had started out, when they met at Speed Dating. She had been healthier then, but now, against her will, she was in some ways worse, and her life was more limited, for example travelling, which had been limited before, was now going to be even more limited for her. She said she was sorry about that.

WHAT HAPPENED NEXT?

All that needed to happen, all that Princess hoped and expected would happen, was that the Squire would take her in his arms, and tell her he loved her and that he was upset by how painful things had been for her that summer, now that he understood more thoroughly was she had gone through. He would say something reassuring, and that he since he cared so much for her, the last thing he wanted was for her to risk her health by doing things that might make her worse. And then the Princess would thank him, and move on to making plans about the Squire’s birthday, which was a couple days away.

That was all that needed to happen.

'Autumn Sun and Trees' by Egon Schiele

  

But that was not the way it went. Instead the Squire said:

“I just want you to know that I have far too many doubts about your illness for me to ever consider having a long-term relationship with you.” 

And then he looked at her with an easy-going smile. The Princess must have looked dumbfounded, because he too, for one moment, looked confused. Then he said:

“In the past, other women I’ve dated have gotten the wrong idea, that I wanted to be with them long-term, and I don’t want to do that with you.”

The Princess felt the limb she was standing tippy-toe on snap, and then the ground below her spinning and dropping away, in a way that was almost more unsettling than if she had met the ground with a painful crash. 

The Princess felt like she was floating and the ground was spinning away
(painting by Leonora Carrington)

He spoke to her in the strangest of tones, as if he and the Princess were choosing between pleasant things: it was up to the Princess to choose between being under the Spell or not being under it, while the Squire, for his part, would choose—or had already chosen, it wasn’t quite clear—between whether he wanted to be with Princess or not. But whatever choice each one made, it would all be very pleasant all around. As if they were deciding between Vikram or Hatha yoga, a tango or a waltz.

And now he was saying, “I couldn’t imagine having a future with you, because of your illness.”

He looked at her with a pleasant smile, as if expecting her to discuss very kindly with him his decision not to be with her, given that her illness was complicated, was possibly getting worse, and would probably never go away.

As she looked into the Groovy Squire’s gee-wiz eyes, she felt endlessly, unnervingly suspended in air. She tried to shake away this feeling, that there was nothing solid to stand on, the thought of her parents’ palace in DC flitted into her mind, for an instant, making her want to laugh, but then the room seemed to rock a little bit, the way it had when she’d once been in an earthquake.

She focused back on the Squire, on the fact that the Squire had actually said what he had said. But now he was saying more, an extensive list of all the complicated things about Princess’s illness—

YES, WE JUST READ THE WORD "ILLNESS" 

The beautiful, terrible Lyme bacteria

That word has slipped into the story, even a few paragraphs back. So let’s pause here, and acknowledge what the Nasty Spell was. It was not something in a fairy tale. It was a bacteria, a tenacious illness called Lyme Disease, that was very good at taking up residence in every corner of people’s bodies, and particularly at burrowing its way into their nervous systems and yes, even into their brains, where medicine did not easily reach, where it caused all sorts troubling symptoms, such as panic attacks. 

The bacteria was not the Princess’s friend, and yet it was in some ways her most intimate relationship, another creature living inside her body night and day.

It was an illness she would probably have, in some shape or form, for the rest of her life. If she stopped taking all her complicated medicine, her symptoms were immediate, and severe. And on top of it was her Chemical Sensitivity, which worked in tandem with Lyme, making things just that much more complicated.

None of it was by choice. If ever there were any choice about it, obviously the Princess would choose not to be sick. This is part of the very definition of sickness. It’s not fun, and you don’t choose it.

But the Squire did not seem to understand that at all. Which brings us back to our story, the Princess and Groovy Squire, having their talk. The Squire was saying:

“The magical food! The medicine around the clock! All the things you can’t do! All of it so complicated!” 

(His sentiment seemed to be, ‘complicated for me.’ He was not concerned about her, he had expressed no concern for her in all of this. Not about the Neurological Episodes or how worried she might be, not about how she might feel about what he was saying now. Not a word.)

Then he said:

“I know the real reason I didn’t move in with you was because of your illness. It didn’t have to do with my work,” he said. “I realize I could have moved into the Tower if I wanted, but I didn’t because of your illness.”

To this the Princess said nothing, only stared, dumbfounded. It had occurred to the Princess she had misheard him the first time, and that he had misspoken the second time. By now, however, she had found her feet, and was walking around the kitchen, starting to put this and that away, to help calm herself, while she listened, trying to understand. But she failed to finish even the little tasks in the kitchen, because they felt impossible.

He was now saying, “But I like coming over to spend the night with you a few days a week, the way I do now…the way things are right now—well, can’t we just keep it that way for now?” And quite confusingly, in all of this, he threw in, “But I love you.”

To all this the Princess said nothing, or next to nothing, she was in too much shock. She managed to say, “I can’t be in the same room with you anymore.”

The Squire looked surprised.

“Are you asking me to leave?” he asked.

The Princess said No. Telling someone to leave a place he had come to think of as a home, she knew, was a very big deal, a drastic thing. She was not ready to say that to him. 

Perhaps her heart had not caught up to reality yet.

“No, I’m not asking you to go,” she said. 

It was she supposed, a way to give him a second, or fifth, chance. “You don’t need to leave,” she said, “But I’m going into my bedroom so I’m not in the same room with you.” (She noticed how what had once been ‘the bedroom,’ where the two of them slept several nights a week, had now turned into ‘my bedroom.’)

As the Princess turned to go to her bedroom, she said, in her utterly confused state, “Well, I thought you were happy with me. You’d said all along you were happy. But if you want someone to travel around the world with you, I can’t do that.”

“Wow, you make what I want sound so superficial,” the Squire said. The Princess shrugged. She was too confused to sort out what was superficial and what wasn’t. She went into the other room.

After a few minutes the Squire knocked on the door of her bedroom, and told the Princess he had decided to leave. He would call her the next day, he said, if that were OK with her. He didn’t ask her if she was OK, or express any concern for her, or express any remorse. The Princess nodded. She wasn’t able to think straight yet. She turned away. She heard the front door close.

In a daze, she got up and did the rest of the Hundred Magical Things she needed to do before bed. All of it so long and complicated, as a Hundred Magical Things inevitably are, and tonight, she seemed to do them all in slow motion. At last she got in bed and lay down.

The Princess's bedroom 

As you may have guessed, she didn’t sleep. She lay awake, counting her breath, doing the meditative exercises she had practiced over many years, knowing this might be as close as she would get to sleep that night. She told herself she had to accept reality. Even if he had misspoken entirely--well, even that line of thinking didn't get her very far. He had hit her hard exactly where she was most vulnerable, with no word of concern for her, and then he had left.

She knew from experience that just because one or two, or up to ten bad things had happened to her in her life or in the past few months—and she’d tried to bare them out with patience and as much humor as she could muster—it didn’t mean another bad thing couldn’t happen. 

In time the morning came.

The Squire texted her about 10 a.m. and asked if he could come over to talk to her that evening, after he was finished with his work day—just a simple little text, no alarm bells or regrets, no phone call, no rushing back to her with immediate urgency now that he had realized how terribly he had misspoken the night before.

She replied that he could not come over. By the time she had brushed her teeth that morning, she had already come to her decision. 

It was the decision that all the different ways of looking at her situation invariably lead her to, the way all the twigs and limbs and branches of a tree, when traced backwards, return to the same trunk. 

Just to be sure she wasn’t rushing her decision, she spoke on the phone with her mother and her friend the Duchess of Ravenna, and talked about it with the Lady Christiana. All she had to do now was carry her decision out. 

She called the Squire at the end of the day, when he would be available, and said: “This is the break-up phone call. It would be more respectful to do it in person, but you don’t deserve that. I never want to see your face again.”

She then unleashed a torrent of fury—logical, eloquent fury, such as a Princess who happens to be the daughter of two lawyers is capable of, and might, in certain well-deserved circumstances, unleash.

To her surprise, the Squire seemed genuinely surprised. She didn’t know if this was bad or good. In the end, it didn’t matter. 

Drawing by Kiki Smith

PLEASE LEARN ABOUT AMANDA'S ORGANIZATION FOR REFUGEES AND CONSIDER MAKING A DONATION:

https://www.collateralrepairproject.org/

HAS THE PRINCESS FOUND TRUE LOVE? PART 1

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!

NOT TO MENTION

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!)

A NIGHT OUT

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.

A SWEETHEART OF A MAN

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.

A DELICATE BALANCE

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.

A COMPLICATED YEAR

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?

IS THE PRINCESS 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.

ON WITH THE STORY

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.

THE NECROMANCER

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....