Out of This

I could not love, or look up to, a sister more than I do my cousin Amy. Aside from her intelligence, her immense sense of kindness and sense of the ridiculous, her love of books, cats, and baseball, she knows how to rappel down a cliff. A cliff. That she has climbed. With her fingers and toes. Her idea of fun is wilderness hiking and camping, even in the snow, even in Death Valley. Bugs, bears, trail mix, more bugs, being totally cool with pooping in the woods, all that. If there’s a guy where she lives in Berkeley, CA who hosts strangers for nude hot-tubbing in his backyard, she will have the key code. Yes, she took me.

Amy is also a Creative. Ballet/violin youth, art history at Stanford, house full of bohemian beauty, window boxes, art books and color. She is an amazing nature photographer.

But this description is the saddest thing in my life. For over a decade, Amy has been one of the Millions Missing, a person with ME/CFIDS. Most of that first paragraph isn’t true anymore: she can’t do those things. Or travel. Or see friends. Or leave the house a lot of days. Or be upright sometimes.

Here is how the #ME Action web site describes this illness that steals lives:

“Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

In many parts of the world, it is commonly called Chronic Fatigue Syndrome.

There is no unified definition or diagnostic criteria for ME. Common symptoms include significant physical or mental fatigue, post-exertional malaise (a perverse response to normal exertion), debilitating pain, sleep dysfunction, cognitive dysfunction, neurological impairment, sensory sensitivity and severe immune dysfunction. The majority of ME patients also have…tachycardia.”

There is also no treatment, no cure, and almost no research. Now you know. Here is Amy’s picture in words of people with ME, posted for World Awareness Day, May 25:

Maybe you know, or used to know, someone with ME. We are the former coworkers who pushed ourselves to work for months or years, taking shorter and shorter days until one day we just disappeared from work and from your lives. We’re the friends you used to see several times a year whom you now haven’t seen in three or four years. We’re the people you always saw around the places you hang out, doing the activities you do, and now occasionally think, “Hmm, I wonder what happened to them.” Maybe we’re someone you see from time-to-time who looks and acts as you’d expect us to and you assume our appearance and behavior is what we’re like every day. What’s hard to imagine is that for most of us, if we’re even able, going out is a rare event or something we’re forced to do for an important errand or appointment. Then we go home, lie down and do little else during our waking hours for days or weeks except maybe stare at a screen, go online, read if we’re lucky, and do a bit of necessary housework. Most of that time we feel like we’ve run a marathon for which we haven’t trained, while suffering from mono, motion sickness, altitude sickness and a hangover. And nothing makes that sick feeling go away. Here I am in the place I spend 18-20 hours a day, not well enough to attend the SF protest.

Creating and curating a beautiful habitat, and taking pictures when she can, is Survival for her, not just Art. She is home almost all day, almost every day. To have beautiful colors, flowers, cards, objects, and prints to look at is how Amy keeps some pleasure and meaning in the space and time that used to be her life. Some of us are Creative Part-Timers because chronic conditions dictate our truth. But she is a True Artist, making some beauty out of this.

Here is my poem based on the signs she posted on Facebook for World Awareness Day:


I’m missing

my friends, family, work.

Community. Movement

and sweat, sunny days,

and feeling “good tired.”

I’m missing

my cognitive abilities, good memory,

sleep cycle, vocabulary, and focus. Parks,

beaches, classrooms, museums, stores, restaurants, theaters, theatres, walking, and hiking trails.

My normal breath

and heartrate.

I’m missing.


I, too, wanted to try to make beauty out of this. With all my heart I want her Out of This.








Saying Neigh


When I was little, I liked Bobbie Had a Nickel by Frieda Friedman, a picture book that follows Bobbie’s thoughts on what to buy with his five cents. A toy? A bubble pipe? In the end, he chooses a carousel ride rather than a thing. Thus the naturalization of the positive capitalist construct expressed by the assumed empowerment paradigm inherent in material possession is challenged, and, indeed, somewhat overturned. Blimey. The academic’s gotten out. I have asked everyone please to keep that gate closed. Wait a minute…c’mere. C’mere…okay, safely back inside. Anyway. Many artists know all about deciding what to do with the one actual nickel in their pockets, and for the CPT, there is also deciding about the small coin of time you have to spend on your Creativity. I don’t always have/find/make the time I need to unroll the whole red carpet for an idea, or to let what’s sitting in my bowl rise slowly while I wait to roll it out at the exact right moment. (Two metaphors, both using “roll”. Woo.)

I feel the same five-cents-only pinch when I try to make time to experience other people’s Art. Part of me pants to explore new things as I come across them. Another Part of me, the wiser bit, smiles like the Buddha, knowing that it’s necessary to say No. There is nothing wrong, is there, with pursuing a couple of passions in depth while leaving other worthy things alone. Except for how that can feel, of course. But there it really always is: all the Books not read, all the Art not experienced, swarming around us like bees with sharp backsides. We have to limit ourselves. But these limits—call them renunciations when they sting enough— help us honor what choreographer Twyla Tharp calls our “Creative DNA,” that which we truly Are and Need to be Doing in the time we have. Knowing that doesn’t make it easy. Readers and art lovers have FOMO all their own, and it can be raw.

Riding a carousel was meaningful back then. My parents took me to Roger Williams Park in Rhode Island many Sunday afternoons, where I loved to pick my colorful horse and happily go around. OK, sometimes more than one horse…they were all pretty, you know.  Naturally I was a Bobbie fan. As I am now a fan of the 18th century, literature, and theater. And poetry, Modernist art, Bohemian style. And good nature writing about the shore and good spiritual writing. And I literally have no time for it all, never mind the rest of the fascinating world. More or less. Sometimes I worry that’s close-minded, my Ego demanding to see itself reflected in the art I engage with. There’s enough truth in that worry to make sure I stretch mindfully and take a spin outside the comfort zone. But at the same time, doesn’t any Creative, especially a CPT, need to acknowledge the bright horse in the mad swirl she recognizes as her own, and, as the song says, ride that painted pony?

I admire people whose passionate pursuits aren’t peppered underfoot with gravelly bits of the roads not taken. I suspect they understand that the Rest of the Art is for someone else to connect with. We love the world together; it only works as a group effort. That’s not a bad thing to realize in trying to spend your nickel well on your own art and other people’s.




The notebook in which I drafted this post has two items several pages back, on each side of a sheet. One is the full quotation from Bernard Malamud that I excerpted in my previous post on Routines. It’s worth sharing, with thanks again to author Mason Currey, for this last post in the trilogy on this topic:

There’s no one way—there’s too much drivel about this subject. You’re who you are…You write by sitting down and writing. There’s no particular time or place—you suit yourself, your nature. How one works, assuming he’s disciplined, doesn’t matter. If he or she is not disciplined, no sympathetic magic will help. The trick is to make time—not steal it—and produce…Eventually everyone learns his or her own best way. The real mystery to crack is you.

On the back of that sheet is a single, spontaneous observation that pleases me weeks later: “When, exactly, did I do all this writing?” Despite being mindful about positive habits, I’m as perplexed as when I wrote it.

Do you agree there’s discipline and there’s discipline? I refuse to bow my head in shame next week when I have 60 research papers to grade. Some people Must work the same way at their Art every day, and many people do, but some CPT lives require lots of negotiation. I refuse to use the label “undisciplined” instead of “human.” Maybe some days next week I will edit two lines, or write one sentence, or Contemplate my Art. The right thing for me is to be as steadfast as it is actually possible to be, and that takes enough honesty and discipline right there. If I write two words one day and hundreds the same day a week later, I’m both Writing and accepting a Universe I don’t control.

I’m focused on the distinction Malamud notes between making time and stealing it. CPTs don’t steal time from other things to Do Art? I do. Rather, I thought I did until I realized, for real, that priorities can be shifted. By me. The stamp that says “Important” fits my hand, and no one else will pick it up if I don’t. Do we Treat our art as if it’s as Important as we say it is? Everyone breathe. I don’t always, although that importance is as clear as the sky to me. But it’s fairly illegible to a lot of the culture that assigns value in the world out there. It can be hard to take action, every day or ever. There are patterns in life that steer us, people and things needing us, there are temptations, and there is fatigue. And even joy.

We can read about Good Habits for business, happiness, art, yoga, relationships. But no amount of advice reduces the sharpness of Malamud’s word “crack.” Crack. Sustained effort on a walnut? The sudden violence of thunder or a dropped mug of coffee? We have to figure that verb out. And then…be responsible for what happens. Yeah. Whether that’s a smooth wheel or a daily grind for a CPT, crack=change. Cracks open and reshape. Of course I won’t leave out Leonard Cohen! What do you take me for?

Forget your perfect offering/There is a crack in everything/That’s how the light gets in.

Perhaps the crack is already there, and we just have to let go and acknowledge we already know How. And just…

I’ve always had a relationship with my Art, but I’ll be more honest than I’m comfortable being; this is the first time in my life that I’ve Had to Write. Trying to do it every day as a practice has made me need to do it every day, even when I don’t do it. I know: Duh. In some ways, I feel I’ve lost my time management skills because everything on my schedule has to fit differently now. It often feels a little strange and vaguely bad when I write, as if I shoplifted. It was only a small item, but I stole something. Make time, make time, make time…How? Renounce. Admit what is less important. Admit it has to be. Struggle with that. Struggle with your familiar, kindly, awful habits. Get the right job that supports you and your Art. Or not. Make peace with all that while you make time. Then make brilliant Art. So easy, isn’t it?

If you’re also trying to figure out a changing CPT life, here’s the best advice a lot of different folks have given me:

Commit, really, but in the real world. The first time you don’t “do art for one hour every single day” in your full CPT life, you will have failed. Who needs that? Let yourself, they told me, learn what is possible, and then Show the hell Up for That. The habit will take over, for better or worse, sooner than you think. You’ll want to. You’ll need to. Cracks can be beautiful, but they are not pretty.

Don’t always do it alone. Whether you need accountability, feedback, support, or spirit food, get some from other people. Move into a café table with a friend. Take a class. Share a ritual. Hold hands by the edge: cracks can be deep.

And now…back to Twyla Tharp. Last time! For now. Tharp gets up early every day for a long work-out; she’s a dancer, and that’s part of her Work and her Art. But it’s not her Ritual. Here is where she woke me up. Her Ritual is to rise, put on work-out clothes, go to the street, and get a taxi to the gym. Just that. As she writes, “…the ritual is the cab. The moment I tell the driver where to go, I have completed the ritual.” So I listened to her, and I no longer walk for an hour many mornings. I just get up at 5:15, drink water, drink coffee, listen to NPR, and put on my walking gear and shoes. Then it is already happening, and the walk takes no effort at all. To my surprise. If I don’t do these things, it’s not happening. Okay. I no longer try to meditate; I just sit in my space on my cushion, set a timer, and ring a bell. And I don’t write. I just go to my chair in the morning and open a notebook and pick up a pen. That’s all I make myself do. But apparently, that’s exactly when I did all that writing.

What is true for You?