ARE YOU TAKING MONDAY OFF? (PROGRESS REPORT)

The Green Sofa 1903, Sir John Lavery.
"Lying on the sofa is your job right now!" my mom said to me. (Can I wear that as my work uniform?)

"Are you taking Monday off?" the salad greens farmer asked me at the market Saturday. I'm one of his regular customers, and he was just being friendly. I was momentarily flummoxed, however.

"No, I don't really get days off," I said with a laugh. Changing the subject is always a good tactic in these situations. "What about you?" I asked. Interestingly, my farmer friend said he was going to relax on Memorial Day. (Instead of waking up at 4 a.m. to pick the arugula, which he's mentioned in other conversations.)

I remember when I was at my most sick. I would drag myself to a level one yoga class, where I would join in the stretching and child's poses, then lie on the floor and breathe while my classmates moved on to more strenuous things, such as the parts of yoga that involved standing up.

Every now and then these vertically gifted people would talk in happy tones about an upcoming three-day weekend. "What are you going to do on your day off?" they would ask each other. These were conversations I opted out of.

Sometimes, though, when Memorial Day or President's Day rolled around, I would imagine what I'd say to people if the universe would also grant me a day off. "It'll be great!" I'd say. "I'll get up and go for a run first thing. I'll eat whole wheat toast for breakfast, then I'll write for a few hours. I'll go the grocery store and buy my own food, cook dinner, and wash the dishes. And I'll eat a piece of chocolate cake, and then I'll sleep all night long."

Now, I do all of these things on a regular basis--except for the toast and cake. I almost take it for granted that I can do them. And I still don't get the day off. Back when I was my sickest, I assumed that if ever in the future I could run for three miles, or spend two hours dancing, I would be cured. I would be living a completely normal adult life.

Reality turned out to be far more complex. I can run and dance, but each day I make huge compromises with Lyme disease. Currently, I get up and seven and act like a quasi normal person until about ten thirty, when I need to rest again for at least forty minutes. I always need to take a nap after lunch. On any given day, I still don't know if the energy to go running will be there, although most days it is.

In a previous post I wrote about how my hormonal and endocrine systems are underactive. (This translates to issues with energy regulation, and all those female things like getting my period) This could be the result of the Lyme itself, of the physical stress from Lyme treatment, or a side effect of all the medicine I used to take. When my Dr. Marty Ross explained all this to me, I decided to try a few months of acupuncture and rest(-ishness) to see if these systems come back on their own, instead of immediately jumping into thyroid pills and estrogen and other hormanal replacement.

So that could be why I need all these naps, and why my energy isn't all that reliable. On the bad days, I remind myself that I chose this harder route for a good reason. In the long run, I'd like to be taking as few pharmaceuticals as possible. Within a few months, one way or the other, this aspect of my recovery should come to a resolution. In other words, I'm expecting that in the future things will be a little better. In other words, it's been six years since my Lyme diagnosis, and I'm still making progress.

DANCING vs. TENNIS

Fred and Ginger!

My mom is upset about the study of activities that prevent dementia. She wants the research to show that tennis is just as effective as dancing. Instead, the results contain a line that reads “tennis and golf…0%” meaning zero percent of the elderly people tracked received benefits from those activities.

But the fine print says there weren’t enough participants doing these activities to be able to measure what their effects were. This was a real-world study of elderly people in Queens, starting in the 1980s. Apparently, tennis and golf just weren’t that popular, but dancing was.

 
So who’s to say that tennis, with its split-second decision making, its improvisational aspects, isn’t also good for the brain? I sincerely hope so, since both my parents are devoted to the sport.

 

**

This morning my father came home after tennis in a bad mood. “I couldn’t get my f**ing first serve in!” he said.

I, on the other hand, had gone tango dancing last night, and could feel the happiness from dancing still in my body.

“Thank god,” I thought to myself, “I get my exercise in a way that isn’t a zero-sum game.”

This isn’t to say dancing can’t get competitive. We’re human beings, after all.

 
“Yoga isn’t competitive!” someone in one of my yoga classes once said. My teacher laughed really hard at that. “You want to make a bet?” she asked.

 

Yoga gets competitive.

Writing gets competitive.

Cooking, that most nurturing of arts, is now very competitive (at least on TV).

Fixing the economy has turned into us vs. them.

Probably, somewhere out there, meditation gets competitive.

And dancing can be competitive (“Dancing with the Stars,” anyone?)

Recently I read, from one of the those happiness researchers who got written up in the New York Times, that people who don’t compare themselves to others are much happier.

By comparison, they are happier. I am now instantly comparing myself to these people who are happier than me. Who are these magical people, with a magical knack for not comparing?

As humans, we compare. I've even at times caught myself thinking something along the lines of, "Oh, I wish I had that other person's illness. She's got it better than me!" And how ridiculous is that?

 

And dancing, too, gets shoved into a competitive box. We create official competitions, and even when there’s no competition for miles around, dancers are constantly, unofficially, measuring ourselves against each other. We just can’t help it.

The movement of dance, however—what you’re doing moment to moment, whether there are judges watching or not—those movements are inherently cooperative. This is particularly true for partner dances. In tennis and other games, each and every movement is about winning or losing. What is good for one player is always bad for the other. (The words partner and opponent say it all.)

 In dancing, all your intentions are about coordinating with the music and with your partner. You have to react quickly, you have to improvise, and this is what makes it difficult. Each movement, however, is about building on what the other does to make something harmonious and beautiful. My theory is that, dementia or not, this is why dancing makes you so very happy. How can you not feel that spirit in your body and mind?

 

FINDING WISDOM IN A DIVORCE-HELP BOOK

Woman Reading, by Aubrey Beardsley

Is it OK to be finding wisdom in a divorce self-help book, if the person you’re “divorcing,” is the one who told you to buy the book?

I broke up with The Poet just as I was finishing the last draft of my memoir. I was in fact editing the section where I meet The Poet and am so happy to be with him and have his support during my Lyme diagnosis and the first years of my treatment.

It was really painful to be polishing up those pages, and many times I longed to throw the manuscript out the window. I just wanted to be done with it and move on to other writing. All that other writing, which had nothing to do with my relationship—I was sure those projects would be fun.

Then I finished. I was free to start up all those happy projects.

Only it felt impossible to start. It wondered why I was writing all these short stories, and how I’d been so enthusiastic about them before. I wondered how I’d had the grit to keep sending them out to lit magazines only to have the kindest rejections come back. Pre-break-up, rejections had only inspired me to send my story out to more places. Post-break-up, those rejections deflated me.

More than ever, breaking up with The Poet felt like stepping into an emptiness. And that emptiness surrounded my writing in particular.

For all our other troubles, when it came to writing, The Poet had been my cheerleader. He had always believed I was really good. I’ll admit, it was kind of in the way your mom believes you’re a good writer. Our styles and approaches to writing were as divergent as possible. The Poet has a short attention span, I have a long one. (Maybe part of our ultimate incompatibility?) He kept index cards in his back pocket and wrote the wry, disjointed, cryptic lines of his poetry as they came to him, one by one, at random times in the week. He would write things and post them on facebook the same day. When he edited, it was always with the help of other people.

I, on the other hand, sit down for hours, writing out paragraph after paragraph, and spend just as many hours editing alone before I show anything to anyone.

The Poet didn’t read my twenty-five or forty page stories. He’d read the first half and say he loved them. He also read all of the ones that were three or six pages, and pronounced them brilliant.

Strangely, it didn’t matter to me that he never saw every sentence I wrote. That he’d read my short pieces and listened with all his attention and enthusiasm when I talked about writing was enough. He believed in me enough to cheer on the longer stories, to assure me publishing is a numbers game, and therefore I should keep submitting my work. He gave me an invaluable writing guide, on how to crank out the first draft of a novel (in my case memoir), which got me to pound out the first draft of my book. He encouraged me every day while I wrote that first draft.

Even as other parts of our relationship deteriorated, the connection we had as writers stayed strong. Then suddenly I was without it. I was the one who decided to leave him, but that emptiness—wow. I walked straight into it, voluntarily, and I’d had no idea what I was doing.

I don’t regret the break up, but I regret I’m not with him to celebrate how well his new book is doing. It doesn’t help that I am staying in DC with my parents. This gives me logistical and moral support while I’m getting through this last phase of my health issues, but it means I’ve left all my Seattle writing connections behind.

 So I have this book, called Rebuilding When Your Relationship Ends. The Poet sent me an email recommending it to me. (Yes, I know—the self-help book that comes from my ex. Well, breaking up with someone you’ve lived with for seven years isn’t a straight shot.) From it I am learning how you have to find strength in yourself instead of relying on that cheering your partner used to do for you. You have to reach out to other people for support, build other intimacies. That might sound obvious, but I am an introvert, so this doesn’t come naturally to me. According to the book, this process will make me whole again.

I don’t know how whole I’ll end up, but I’ve found a Meet-Up group for writers here in DC. It was a good first step. And I’ve gotten back in touch with Seattle writers through email. I still miss The Poet’s particular enthusiasm, his funny, shazam-like intelligence. The emptiness is still there, but when I sit down to write, it feels a smidge less hopeless. Once I get myself typing out sentences and paragraphs again, the emptiness steps back, and sometimes I stop to notice that I’m happy! The trick, as in so many other things, is getting going.

HURRAH FOR DANCING!

A friend shared this on facebook, and just the week before someone mentioned this study to me while I was swing dancing.
 

 

Here are the thoughts of a dance teacher and dance historian at Stanford on the study.

http://socialdance.stanford.edu/syllabi/smarter

If you are very sick, moving around at all is difficult. But if you're getting treatment, things will get better. Once you can, play some music and dance! Even just a tiny bit. It will make you happy.

THE WISE MOTHER OF THE CONVALESCENT

Me: I was going to work on my memoir marketing letter, but (grumble grumble) I'm a little tired. I think I'll lie on the couch for half an hour first.

My Mom: Yes! Go lie down! Remember, N., that's is your job right now! Lying on the couch is your top priority.

Thanks, Mom. I couldn't have said it better.

The Convalescent, James Jacques Joseph Tissot 1896

I spent the next 90 minutes on the sofa, getting up just in time to dash off to tango class.

POWERFUL, FLOWERFUL SALAD

A salad of parsley, carrots, bell peppers, pansies, and marigolds. (Vinaigrette is olive oil, red wine, salt, and pepper.)

It's been a long cold spring here in DC, which means the pansies are still in full strength. Yum!

You can eat many of things in your back yard that might not look like food! Here's a list of edible flowers, from an old cookbook, The New Basics by Julee Rosso and Sheila Lukins. (I still love this cookbook, partly for its beautiful illustrations. It was printed in 1989, by the authors of The Silver Palate. When I was a kid, this was the trendy cookbook my mom and all her friends were using!)

EDIBLE FLOWERS

Anise Hyssop
Arugula
Borage
Calendula (this stuff grows in Seattle practically like a weed!)
Chamomile
Chive (if your herbs grow flowers, you can eat them, too!)
Chrysanthemum
Daisies
Dandelion (bitter!)
Day lilies
Geranium
Hollyhocks
Honeysuckle
Lavender
Marigolds
Mustard flowers
Nasturtium (one of my favorites)
Pansies
Rose petals
Squash blossom
Violas and Violets

THE CONTRARY CONVALESCENT

The Convalescent, Gwen John 1924

I love this painting by Gwen John, called "The Convalescent." It is so peaceful! It is also a world away from how I've been feeling about my own convalescence, i.e. since I stopped my Lyme medication on April 5th.

According to Merriam Webster Online, convalescence means the 'gradual recovery of health and strength after disease.'

I do not want to have anything to do with gradual.

'Gradual' is in fact the one word in this definition I would like to do away with! I’m OK with taking a nap and getting plenty of sleep. I’m OK with a few leisurely walks, and time spent reading. But I also want to be running with my dog Cleopatra, going dancing four nights a week, and spending several hours a day writing. I don’t just want these things. I’m desperate for them now. If not now, then in a week.

Yesterday I had an appointment with my naturopath, Nesreen Medina. She told me I wasn’t going to get my way. Coming off my Lyme meds and the crazy amount of supportive medicine I was on is a process that will take easily three months.

‘Think of everything you were taking. That’s a big adjustment for your body to make,” she said. “It’s huge!” Meanwhile, Nesreen said, things will feel like a pendulum, swinging back and forth until I find my center.

There’s no way around it. It will take that long for my endocrine and hormonal systems to get their groove back; that long until I see where I land.

Meanwhile, I can count on erratic energy, and more hours than I’d like on the couch. I can count on not making it to every dance class, and not writing as much as I'd like. 

This wasn’t what I wanted to hear, but ultimately it’s good to hear it. It quiets my spinning worries about why I’m not feel better yet. And it means I can come up with some good strategies for getting through the next few months.

Basically, it comes down to patience. Something I need to teach myself over and over. Just when I think I've got the hang of patience, things change up again and I’m smack in the middle of impatience.

 

Patience means accepting reality, and adjusting to what’s going on right now. If there’s one thing I’ve learned at my ripe old age, it's this: once you embrace reality, everything opens up, and change is possible.

 

NAP 22

The Lyme support group meets today. It is good to go to the Lyme support group. Only due to Lyme Disease, I can't go to the Lyme support group. Although I may no longer have Lyme Disease, my body is still recovering from having had Lyme Disease.

Which means I need to take a nap every day. And the Lyme support group meets at nap time.

"Flaming June" Frederick Leighton 1895

WRITERS WITH DOGS (AND SOMETIMES WITH ILLNESSES)

Virginia Woolf with her cocker spaniel Pinka

 
Recorded books have been a life line throughout my illness, from the eight dark years without a diagnosis, through to my current transition off antibiotics.

 I just finished listening to a good book, called Shaggy Muses, by Maureen Adams. It’s about five women writers and their dogs: Elizabeth Barrett Browning, Emily Bronte, Emily Dickinson, Edith Wharton, and Virginia Woolf.

 
Although I love my dog and consider myself a writer, I was wary of this book. Writing about dogs has the potential for turning into drivel! Maureen Adams avoided this, using the angle of dog ownership to create concise, engaging biographies of each writer. Each biography was just long enough, without being too long. (Happily, these were no five-volume chronicles of Winston Churchill’s life.)

Edith Wharton liked lap dogs.

I was also struck by how many of these writers lived within limitations, due to physical or mental illness. Nonetheless, they managed successful careers as writers, and during times when writing as a woman meant swimming against strong social currents.
 

 

Cleopatra keeping me company!

CHRONIC FATIGUE SYNDROME and LYME DISEASE

From 1999 to 2007 doctors told me I had Chronic Fatigue Syndrome, or that I had food allergies, or that I had a psychological problem.

My family doctor ran a test for Lyme disease that came back negative. I didn't know that test was wildly inaccurate. She didn't either. She implied I'd made my illness up, and told me if I exercised a little more every day I would get better. That bad advice haunted me for years.

I'd been a cross country runner and a rugby player. But now every time I tried to walk a few blocks, I ended up in bed for days.

"A sick girl" by Mikhail Nesterov 1928

In 2007, a doctor who was knowledgeable about Lyme testing and Lyme disease diagnosed me with the illness. Once I started antibiotic treatment, everything changed.