Friday, December 14, 2018

Ezekiel Saw the Wheel by Rosemary Woodel

Ezekiel saw that wheel
Way up in the middle of the air
Ezekiel saw that wheel whirling
Way up in the middle of the air
Now the little wheel runs by faith
And the big wheel runs by the grace of God
And a wheel in a wheel whirling
Way up in the middle of the air
-Woody Guthrie

I’d been having trouble with visual acuity recently.  More trouble, is the truth of it.  It isn’t carelessness that causes me to take photographs that aren’t sharp.  “Tack sharp” as my photography teacher says.

July 19 and August 2 I saw Dr. I., the retinal ophthalmologist.  Normally I see him every three months.  I’d gone back again so soon because I had a new symptom I wanted him to check.   
I’d been in the hospital in late July for three days with a hemiplegic migraine.  Slightly before then and after, I noticed a wheel whirling in the middle of my field of vision in the left eye.   It was like a wheel spinning while the car is jacked up in the garage — it revolves but goes nowhere. 

 Dr. I. looked at his fancy photographs of the back of my eye and saw no change compared to previous photographs.  He therefore thought the wheel was the aura of an atypical migraine.  Not being a doctor, I didn’t disagree except in my head, because it was unlike any aura I’d ever had.  
 
 My migraine auras are active — bright and flashy and careening all over the dance floor of both eyes.  This shiny rotating disc was only in my left eye and remained straight in my field of vision.   As a photographer, it bothered me greatly that I couldn’t take a picture of it.

Meantime, my vision overall was causing problems in taking and processing sharp photographs.   (I was already used to not reading the printed page well.)  On August 20 Dr. D., my regular eye doctor, said both corneas were engaged in map-dot-fingerprint dystrophy.  It took me two weeks to memorize that.  Wrinkled corneas meant that seeing things in focus would be a challenge.  He said that down the road “they” could scrape them or iron them or somehow smooth them out but there was a long recovery time.  Meantime, I should put drops in my eye every hour.

But back to Ezekiel’s wheel.  Maybe I was better able to describe what I was seeing to Dr. D. than I had with the retinal guy because Dr. D. thought it was not an atypical migraine and suggested I see Dr. I. again, which I did in short order.  

For the first time since February 2017, my wet macular degeneration was active again.  This showed up in fancy photographs of my retina, not from my complaints about Ezekiel’s wheel.  
 
“So,” said Dr. I., “Your shiny wheel was a warning of things to come because this bleeding area was definitely not there earlier in the month.  It’s good Dr. D. urged you to return here.”  And so I had an injection in my eye.

Now the little wheel runs by faith
And the big wheel runs by the grace of God
And a wheel in a wheel whirling
Way up in the middle of the air

Soon after the injection, I saw black floaters that look like many flies in the dining room.  Wait, one of those four is a fly!  Now they’ve turned into crows.  I miss the little wheel, but all these creatures are entertaining.  

I will be changing the subject matter of what I photograph.  If I can no longer do macro photos of flowers, I can experiment with other subject matter.  A few days ago I took photos of shadows of sculptures at the UGA Museum of Art.  If they are a bit blurry, it doesn’t seem to matter so much.

Having had significant losses in my life, I make it a practice to encourage a Plan B.  Or a Dream B.  If I can’t do what I am accustomed to doing with my eyes and brain, what can I do with whatever still works?  A friend says this approach — resilience — is one of my strengths.  Oddly, I’ve noticed my photography is becoming more artistic as I experiment.  That is a very good thing.
~*~
Biography:  Rosemary Woodel is a photographer with diminishing vision and a writer with Traumatic Brain Injury (TBI).  At age 77, she is still adjusting to life in what she hopes are creative ways.

Friday, December 7, 2018

Viewing Frida Kahlo by Emily Rapp Black

CW:  Miscarriage

London (2018)

They come out in droves to see her in London: school groups in their crisp uniforms, sharing bags of sweet and salty snacks and looking bored; sunburned German tourists, one wearing a plastic mask of Donald Trump’s face; a woman in a black burka and black sneakers hurrying toward the museum steps. I’m nervous going in, although I know what to expect: Frida’s legs and casts; the corsets that held up the bones of her back; some of her best and most photographed articles of clothing that make up her quintessential “look.”

The Victoria and Albert Museum is in South Kensington, an area of London where apartments cost in the millions of pounds, and the white buildings are so spotless in the late September sunshine that I’m reminded of the white buildings in Mojacar, Spain, where my friend Emily and I strolled around on a hot summer day six years before when my son Ronan was still alive, my daughter Charlie was not yet born, and I hadn’t yet met my husband Kent. My friend spent the entire day talking me out of a manic state, my first and only (and I hope the last). Later, after hours of walking, we smoked cigarettes and drank white wine on the beach while she rubbed aloe on my sunburned back and I cried. I loop my arm with hers now.

“I had no idea Frida was so popular,” I say, and I’m legitimately surprised. “I’ll bet half of these people didn’t know she was an amputee.”

“You’ve dressed like her,” Em says. It’s warm in the first exhibit hall, and we jostle against the other onlookers, all trying to get close to each photograph or painting or fragment of a framed, handwritten letter for a few long seconds.

Indeed, I have deliberately dressed like Frida, or perhaps in homage to her. It would be ridiculous for an American woman to wear a Tehuana dress, but I have disguised myself in my way, one of several forms of controlled presentation: a denim vintage dress (always vintage, the fabric holding someone else’s story that will never be known to me) with a ruffle on the bottom hem and a nipped waist; tights; mid-calf 80s dead stock white go-go boots; gold jewelry draped and layered around the neck and across the chest, understated elsewhere; dark lipstick; a single braid.

“This is my confident get-up,” I respond.

“It’s working,” she says, and smiles. My mother, 75, and my daughter, four, walk ahead of us, my mom trying to shush Charlie as she cries loudly, “I want to sit down. This is so boring. I don’t like this room.” My mom picks her up and begins strolling around with her, whispering in her ear. She giggles. I wonder what my Mom is saying to her.

The rooms are heaving with people, and Emily and I quickly separate. I’m starting to feel hot and awkward, as I often do in art museums, when the pace of viewing is so slow and people are thinking so hard it’s as if they create their own kind of heat. It’s a miracle that more people don’t faint. Walking slowly is the hardest kind of movement for me, and without the momentum of follow through that happens at a quicker clip, I limp noticeably, which makes me feel unmoored from my body. And that makes me nervous. I notice people’s stares; people are staring. I feel their eyes on me as I limp, then on the photographs of Frida. A hushed concentration hangs in the room - a palpable sense of people looking at things to try and understand them, or memorize them, or take them in.

I’m feeling impatient to see the legs and the corsets and the boots. That’s more my genre. I move into the second hall, but it’s so packed that I’m forced over to the left side, where I stumble into the man in front of me, who catches me as we exchange awkward apologies. When he steps away to reveal a photograph of Frida I’ve never seen, I feel like someone has power punched me in the chest. I literally think of the heavy bag I used to have in the back room of my house in New Mexico, and all the hours I spent beating the shit out of it. I feel like the bag.

I look around for Em - I don't want to stand alone in front of this photograph on the edge of tears – but I don’t see her. Charlie is sitting on the lap of one of the guards while my embarrassed mother tries to pry my jet-lagged, stubborn little girl from his arms. “I'm resting,” Charlie announces, but finally relents and sits next to him on the floor. “I’m just Charlie,” she tells the guard, who is smiling, and my mom, giving up, sits down next to her on the floor. She gives me a little wave.

She’s in traction, I mouth to my mother, but she can’t lip read that far away.

What? I see her whisper back, her eyebrows raised.

“Traction,” I say loudly, and a few people turn to look at me. My mom shrugs and shakes her head, clearly still confused.

Indeed, Frida is in traction in the photo, which is taken from the side, so you can see that her head is suspended in air, held up and back by the pulley system behind her, the canvas taut against her forehead. Her amputated leg is raised up in a white cast and her hair is long and dark and flowing over the white cotton hospital gown. First, I am flooded with the memory of how it feels to be held like that, in suspense, literally, and how painful and awkward it is. The ache in the neck muscles. The blood from the amputated leg rushing down, that feeling that someone is trying to push knowledge into your head through the bone of your forehead with the bone of their hand. How slowly sweat moves through canvas burlap.

Frida is painting. There’s a sketchpad in her lap, and a brush in her hand. This is what makes me want to weep. She makes as pain unmakes her. And she has just lost her leg. I am overcome with compassion for her – not pity – and also compassion for myself, which is hard to come by. To my right, encased in glass, are the corsets that propped up the bones in her back after the accident, and for the rest of her life. My own early casts and back braces were made of the same rough cotton material that stained easily and that looked like something you’d buy at the rope and saddle store.  Frida’s amputation was in 1953; mine was in 1978.  I don’t remember the braces in the Casa Azul; I don't remember the straps hanging from their shells were the same straps I remember pissing on, tying on, shitting on, washing in the sink with bleach, carefully scrubbing out the coins of blood from my period.

I hear a conversation behind me:

It’s so sad, so tragic. 

Isn’t it just terrible, the pain she was in?  

Oh, these awful…devices. But it inspired her to paint. 

Yes, it made her an artist. All the pain.

Mmmmmm.

I limp away, desperate to yell at these two middle-aged women who are having a lovely afternoon at the special exhibit at the V&A. I don’t. But they’re wrong.

Critics and fans, and just the average person who knows Frida from a tote bag or a refrigerator magnet, has inherited this narrative that pain was her muse. It’s what inspired her to paint, this narrative preaches, whether it was the wreckage of her love affair with Diego, or her chronic and constant pain, or losing part of a leg. Art has been codified as her ‘therapy.’” It’s so ridiculous I want to cry or scream, something. Instead, I keep walking.

Going half-made in Spain was not about being visited by a muse; it was a visitation by madness. Screaming out the window of a farmhouse, afraid to kill random bugs on the windowsill as the spirit of my dying boy might be trapped inside. Pretending to be Kafka, then pretending to be his lover, then pretending to sleep, then wanting to be dead. Wandering along dusty streets, my uneven footsteps lit by the bright moon breaking through, every so often, of the muted haze of a late summer Spanish sky.

Other art historians have broken Frida’s paintings into categories of those representing real pain and imagined pain. There is no way to calculate what represents more pain: the red leg with its winged painted foot in the glass, or Frida’s neck suspended in air. Which of her 30 medical procedures was the most difficult? Which of her four failed pregnancies hit her the hardest? Yes, she painted in bed. Create or die. That’s very different from “being inspired.”

Oh, those critics who make the architectural column of her spine a phallic symbol, who imagine the “penetrating thrust” of the pole through her pelvis and she must never have enjoyed sex. The pole got there first and she was ruined, crippled goods. They haven’t seen her legs, her winged feet, her corset decorated and shining. This wasn’t the art of inspired sentiment. It is the art of survival. But only if you see it that way. Otherwise, it all devolves into the typical narrative: the brave, pathetic woman who never had children, whose body was crippled, whose life was ruined.

Some critics and art historians have accused Frida of paying too much attention to her illnesses; some have debated the veracity of her pain, as if they were the architects of the scale. She was accused of allowing her illnesses to displace her maternal drive, and it was a fault, not a triumph, that she gave herself over to the masculine ambition of being a painter.

A diseased woman is a suspicious woman. A grieving mother is a suspicious mother unless she is a virgin and consecrated into the realm of religions impossibility.  It’s as if the idea – and especially the image – of a disabled woman in the world floats. It is there; no, it’s there; and there, or maybe there.

Another wall of portraits I hadn’t seen before: Frida naked from the waist up. Three black and white stills of her gazing at the camera while holding alternatively a mirror, a brush, an adornment for her hair. Her breasts are small and spherical and soft-looking. Her shoulders look sculpted and strong below the angle of her jawline. Wow, I hear someone say behind me, so close to me it’s as if they’re whispering in my ear. She’s actually beautiful. I never thought of her as beautiful. His wife pulls him along and the same pair of ladies stands next to me again. Such a pity she never had children. They would have been beautiful. And now I let tears blur my vision until people move past me and I hear Charlie saying, “Mommy! I’m so bored and I want to eat a cookie at the coffee store.” I pick her up and give her tired face a kiss. Behind us, encased in glass, the corset Frida cut a round hole inside as a way to show her miscarriages, to wear the losses against her, with her, around her, just as any mother would do.
~*~

Biography:  Emily Rapp Black is the author of Poster Child: A Memoir; The Still Point of the Turning World, which was a New York Times bestseller and a finalist for the PEN USA Award; Sanctuary, forthcoming from Random House in 2020; and Cartography for Cripples, forthcoming from the New York Review of Books in 2020. A former Fulbright scholar, Guggenheim Fellow, and James Michener Fellow in fiction and poetry at UT-Austin, she is the recipient of the Rona Jaffe Writers Award; the Winter Fellowship at the Fine Arts Work Center; the Wachtmeister Award in Nonfiction; and fellowships at Yaddo, Jentel, and Fundacion Valparaiso in Spain. Her work has appeared in Vogue; O, the Oprah Magazine; Redbook; the Sun; The New York Times; The Boston Globe; The Los Angeles Times, and in many other publications and anthologies, including The Best Creative Nonfiction. She is Associate Professor of Creative Writing at UC-Riverside, where she also teaches in the School of Medicine. She lives with her family in Southern California, and she and her husband, writer and editor Kent Black, own and operate a book editing and manuscript consulting business. Visit her at www.emilyrappblack.com and https://blueprintmanuscriptconsulting.wordpress.com.

Friday, November 30, 2018

How I'm Still Here by Duane L. Herrmann

Content Warning:  Abuse and Suicidal Thoughts 
Image:  A black and white photo of a little boy wearing a dark shirt with light details.  He has a slight smile.  He is against a plain, white background like an old yearbook photo.
I am dyslexic with ADD and, now PTSD.  The latter I specify as “Domestic” PTSD.  It is not the result of a battlefield experience, except the battlefield was the home in which I grew up.  By the age of two my mother made it clear to me that my existence had ruined her life.  I wanted to end my existence then, but couldn’t figure out how to do that.  By age eleven, I had learned several ways.  I narrowed them down to the least painful and the most assured of success.

I thought it would be ideal to simply go to sleep and never wake up.  I had no way to obtain sleeping pills, so my next thought was gas.  Our house was heated by propane from a tank in the back yard.  The tank was much smaller than the house and our stove was in a very large, open space.  I could not imagine there was enough gas in that tank to fill the entire house.  So, I stayed alive.

I was convinced, by her constant screaming and hyper criticism over minor things (such as the way I shut my lips, swallowed, walked, and even slept), and others such as being forbidden to talk, think independently, or be angry, and all the work I did was wrong, that my mother wanted to erase me.  I mentally and emotionally fought to stay alive.

In school, I could not learn to read.  The letters were confusing and I couldn’t tell the difference between words like:  "on" and "no", "was" and "saw".  The summer after second grade, I walked a mile to the end of our road where a retired school teacher lived.  She taught me phonics.  I thought she was crazy as she held up flash cards with squiggles on them and made outlandish noises with her mouth.  Even more outrageous, she wanted me to make those same sounds to match the squiggles.  I eventually succeeded.  Two years later, in the fifth grade, I read fifty books.  I’ve not stopped.

I’ve wanted to write stories for as long as I can remember.  There was no one for me to play with except my mother, and many times she preferred to read the newspaper.  I wanted to be as important to her as the newspaper.  I began to make stories when I was three or four, but I couldn’t write any down until after I learned to read.  Of course, also during all this time, I was working.

My mother put me to work when I was two and a half and she didn’t want to bother feeding my baby sister.  She gave me that job.  Soon I ran away from home for the first time – nearly half a mile across the pasture that separated our house from Granma’s.  I continued that until well after I’d left home for college.

When my sister could eat solid food, my mother insisted that I help her dress herself.  That remained one of my jobs until I left home for college.  In between, I was given responsibility for all other household jobs.  As more babies were born, I had to care for them, too:  feeding them, changing diapers, etc.  By the summer I was 13, I was left at home with the responsibility to take care of the house, garden and farmyard animals, my two little brothers, and meals for our father, while our mother went out of town for summer school.  It was the happiest, most peaceful summer of my life.  When she came home, Dad put me on a tractor to help him farm.  We farmed several hundred acres of our own plus a few other farms until he was killed several years later.

All this time, school was a sanctuary.  No one screamed at me there, and teachers were grateful that I sat quietly in my seat.  I was nearly the youngest in the class, I didn’t act childish, I couldn’t talk to the other kids (I had been forbidden to talk when I was four), I was simply content to sit.  I struggled to do the work.  Teachers over and over said, I wasn’t trying hard enough.  They had no idea how hard I tried.  No one knew what dyslexia was, nor ADD.  No one knew what a Hell my home life was (more than once I was forced to swallow my vomit and I received a concussion for not washing dishes fast enough).  No one had any idea how many distractions there were in the classroom to claim my attention.  School was a daily, hourly academic and social struggle.  I passed the eighth grade only “provisionally.”

In high school I had two episodes where I lost connection to the physical world.  Walls in my high school moved and changed colors.  I could barely manage to go from class to class.  It took all of my effort to get dressed in the mornings, especially difficult was tying my shoelaces.  One day after I got off the school bus, I collapsed in the circle of pine trees in our front yard.  They whispered me to sleep.  When I woke up, buildings were solid and stable once again.  The next time I began to feel disconnected, I deliberately took a nap in the center of those trees and came back.

That summer, my father was killed and my mother emotionally collapsed inward like a black hole.  The pressure was off me.  The farm equipment was sold and I managed to negotiate my senior year, then left home as decently soon as I could.

I didn’t know I was dyslexic until decades later when my aunt discovered she was, then recognized the signs in my son and myself.  He and I both also have ADD.  I didn’t know about the PTSD until the son of a friend was diagnosed with an anxiety disorder.  I was shocked.  Didn’t everyone feel this way?  Apparently not.  Doesn’t everyone’s childhood crowd into their daily life so much so that you are still there and the screaming is still going on?  I guess not.  I thought everyone had to close their eyes while reading to let the letters sort themselves into words.  Nope.

In spite of all this, my urge to write, and my determination to write, have been so strong that I have continued my efforts.  I still can’t spell some certain words, but I have several word books (with certain words underlined) which I keep within reach at all times.  I have continued to try.  I have more failures than successes, but the successes add up.  I now have so much published that I am amazed.  I have a list.  It began with six small publications.  That list is now nearly twenty pages long!!!  Without the list I could not remember what I’ve done.  When I look through it, I am amazed each time!

I haven’t counted the number of items I have published, I did for a while.  Now I only count books, languages and countries.  It amazes me every time.

My  mother died a year ago.  In her last week, as her body rapidly failed, she twice reached her hand out to touch and hold my hand.  That was more affection than she’d ever shown to me.  It was the first time I knew that she cared for me.  When she was bedfast and unable to function, I was able to step aside from my pain and see the life she suffered.  It was generational, starting with the too-early death of her great grandmother.  Loss and pain kept falling on each next generation.  I was simply born into her pain.  Understanding that has helped ease my pain and I am learning new things about myself.

Don’t give up!!!  Don’t let other people stop you!  Keep at it.  You can do it!!!
~*~
Biography:  Duane L. Herrmann, internationally published, award-winning poet and historian, has held a variety of teaching and other positions, now  retired. His history and poetry have won awards and are translated into several languages.  His sci-fi novel:  Escape from Earth, has just been published.  His full-length collections of poetry are:  Prairies of Possibilities, Ichnographical:173, and Praise the King of Glory.  His poetry has received the Robert Hayden Poetry Fellowship, inclusion in American Poets of the 1990s, the Map of Kansas Literature (website), Kansas Poets Trail and  others.  His history, By Thy Strengthening Grace, received the Ferguson  Kansas History Book Award in 2007. Collections of short stories and historical articles, and dual language collection of poems, are forthcoming. These accomplishments defy his traumatic childhood embellished by dyslexia, ADD and, now, PTSD.

Friday, November 23, 2018

#HomeboundPhotography Interview with Dov Zeller

How did you become interested in photography?

My mother was a photographer. Not professionally. She was, for a while, a professional visual artist, though. She went to Pratt in the ‘60s and she did etchings, water color, sculpture, all kinds of stuff. And her photographs are wonderful. (I’m pretty sure she developed her own photos, too.)

I don’t know when I was first interested in becoming a photographer, but ever since I can remember I admired other people’s photography. I had a friend in college who was a photographer and developed his own images and I was in awe of the artistry, science, and craft-personship involved. But I found the technical sides of photography, dealing with aperture and shutter speed, etc., daunting. Even changing out film (of analog cameras) was overwhelming to me. So I shied away from taking photos for the most part.

As time went on I continued to be interested in photography and in my thirties I began researching and considering the various ways different photographers described the “elements” of photography. (Lines, shapes, patterns, texture, depth of field, perspective, etc.) I was drawn to a wide array of photos but was particularly fascinated by photographs that made artistic use of depth of field. I didn’t fully understand what depth of field was other than some blurry bits and some in focus bits. I just wanted to take photos in which depth of field was a thing. It took me years to really get a deeper understanding of depth of field and the relationship between aperture size and perspective and depth of field.

How is taking photos as a spoonie different from taking photos before you became one?

I was deeply interested in photography before I became a spoonie, but never felt comfortable investing money in a camera. In my mid-thirties I bought a little point and shoot (before that I only used disposable cameras. Ugh.) and I really enjoyed taking photos with it. I took photos of my pup. Of the ocean, I took close-ups of flowers in an attempt to summon the depth of field I was longing to incorporate into photos. Around this time I also got really into plant identification, and that led to an interest in botanical photography. The more I got into that, the more I wanted a camera that would afford more nuanced compositions—more detail, more control.

Funny to think of how, at that time, I had no idea what caused parts of images to be in focus or out of focus. Now I understand it a bit better. When the aperture is smaller the light that hits the sensor is more focused. With less light bouncing around, more of the image is in focus. As the aperture gets bigger and there is more light bouncing around, you have a broader “circle of confusion,” i.e. more stuff out of focus. But it's not all about aperture. Perspective and distances from and between objects also play a big part.

I’m really into science and love learning about this stuff and it's thanks to my friend and mentor Jae, a wonderful human and photographer, that I started to learn more about the science and technology involved in photography (Jae is a scientist, visual artist, dancer, political thinker and activist.) I love hearing them talk about light--movement, reflection, refraction, etc.

But, I was talking about how my photography has changed since I’ve been sick. Well, for one thing, after being sick and homebound for two years, I took the plunge and bought an exchangeable lens DSLR camera. I’m so glad I finally invested in a camera. Learning about photography and taking photos has brought me so much joy. It has enriched my life in ways I can’t even begin to communicate, though I will try. Not only do I get to enjoy learning new skills, but photography has given me a way to explore my limited surroundings and appreciate to the fullest the little ecosystem in which I am living. I love learning. I love finding value and beauty in my confined space.

Over the last few years, I’ve gotten really into macro photography, which gives me more “subject matter” to attend to. Just this morning I was outside taking photos of tiny green flies that were hanging out on the hosta leaves. I am astonished at their beauty and the fantastic technology of their physiology. The colors, iridescence, aerodynamics, and armor. Just, wow. Before I got sick, I had no way to know that I would some day be gushing over the wonder of flies.

I still come up against a lot of challenges. With lighting and finding ways to take a shot that captures the beauty or strangeness or essence of a moment. Or finding a new angle on something I’ve photographed a hundred times. But I appreciate these challenges. It is part of what allows me to keep growing as a photographer despite my limited mobility.

Also, as a homebound person, because subject matter is so limited, I am fascinated by lenses and love to use different lenses to see the world, or at least a particular image, differently. I'm also intrigued by bokeh. Good bokeh is sooooo good. (Bokeh is "visual quality of out of focus areas.")

Has photography helped you connect with the “outside world”?

Yes! In many ways photography has been an instrument of connection with others. Well, for one thing, researching and looking at photographs has been a form of travel for me. And I’ve connected with other photographers who want to talk shop, or just share work. I’m on Twitter and I post photos quite a bit and I love to check out the work of other photographers. And this is the point at which I should mention, I created a hashtag for anyone else who is homebound and who is interested in using it!!! #homeboundphotography. Other hashtags for spoonies/disabled folx to consider using, #spooniephotography #spoonieart #disabledphotographer. And if you create your own photography-related hashtag feel free to @ me on Twitter at @DovZeller

What's a challenge you've had as a spoonie photographer?

Finding subject matter I think has been my biggest challenge. And also learning how to navigate lighting.

What's your favorite thing about taking photos as a spoonie?

Learning. Seeing things more closely and from different angles. Growing to have more appreciation for my surroundings and for spaces I come in contact with. I look at the world differently. I like looking for things of beauty/complexity in the most seemingly mundane places.

I’ve noticed that your photography has a wonderfully observational, contemplative quality about it, as if the richness of elapsed time were somehow etched into the still images. I’m wondering if, and how, becoming and being a spoonie might alter your artistic eye, or perhaps deepen it in some way? 

Definitely being a spoonie has made me something of a time-lapse photographer. A kind of documentarian of the mundane, minute and seemingly uninteresting. For example, early this summer I documented the peonies from bulb to bloom to full-flower to dying flowers to really dead flowers (still taking some images of those.) And I catalogue the wildflowers in the little front yard as they come and go. This morning I found night-flowering campion on the lawn. I’ve not seen campion on this lawn before and I haven’t seen it since I used to walk along the bike path (which I haven’t done in over four years now because of illness.) It was wonderful to see this old friend and I took photos of it at dawn before it closed for the day and then as it was closing and then after it closed. I love that this plant opens at night and closes in the morning.

Has your photographic process changed since becoming a spoonie, either mechanically, spiritually, or emotionally? 

Absolutely. All of the above. And I love that you bring up the spiritual aspect of photography. Judaism is a religion in which a lot of rituals revolve around time. My connection to my Jewish spirituality, before I got disabling ME, had to do with singing, observing Shabbat (in my way), separating “sacred” from “mundane” time. Observing holidays. These are all things I can no longer do and my connection to Judaism has changed a lot and in many ways diminished. But spirituality, for me, is also more broadly about contemplation, celebration, acknowledgment, and gratitude. And photography helps me engage in these things. Keeps me connected to the “natural world” though I am so often indoors. Allows me to contemplate and appreciate light, darkness, interesting shapes/patterns, all the flora and fauna that surround me. So between that, and acquiring better photography equipment, and my subsequent growing relationship with macro photography, and the ways I rely on photography to help keep me: intimate with greenery, grounded, feeling “productive”…I would say that counts as a mechanically, spiritually, and emotionally changed.

What do you notice and prioritize in your photos that a non-spoonie might not, and why? 


I notice all the little insects and wildflowers in the tiny front yard. I take pictures of the neighborhood cat Pixie who visits me a lot when I take photos outside. I document sunrises, and sunsets occasionally (though I am usually too tired by the afternoon to take photos.) I take portraits of friends when I can. I wonder sometimes, if I was not so mobility-limited, would I do more landscape and street photography? The truth is, I can only go out for “fun” (non-appointment-related) excursions once every couple of months usually and I almost always choose to go places where I can take photographs of plant life. (Botanical gardens, for example.) That said, on one of these excursions my friend took me for a little drive and I got to take a few “landscape” type photos of a red barn and it was pretty exhilarating.

Why are you drawn to dawn and pre-dawn shoots? What is the appeal of early morning for you as a photographer? 

Well, I wake up about 3AM on a good day. (On the worst days, I go to sleep at ten or eleven and wake up at 1AM and can’t fall back to sleep. But, there are a lot of better days when I go to bed at 7 or 8 and sleep in until 3.) And though I don’t enjoy waking up so early, it’s wonderful to get to see the sun rise. And to notice the vast variations in sky-scape. Though I still don’t fully understand why the colors and cloud formations happen as they do, I appreciate the beauty, and just keeping track, in my small ways, of the patterns and revolutions and angles of light. I tend to be disappointed by a cloudless morning sky these days, because it usually means a boring sunrise.

For more on Dov's photography (and spoonie photography in general) please click here and here
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Biography:  Before getting full-blown CFS/ME, Dov Zeller struggled to sit still and often read while walking (in between swimming, biking, and yoga). Now he is an intrepid recliner. Though sick with a devastating chronic illness, he is determined to appreciate the ecosystems he comes into contact with. As it turns out, even a small world is full of endless complexity. He enjoys reading, writing, visiting with friends, listening to audiobooks and classical guitar, and observing birds who drop by the window feeder. Zeller lives in Western Massachusetts, where he moved in order to complete an MFA in fiction at UMass Amherst. He has also lived in San Francisco and Oakland, California, and Brooklyn, NY, and he grew up in eastern Pennsylvania. He has two novels coming out this year.

Friday, November 16, 2018

DESCENT Livestream, #TheHomebodiescollective, Etc.

Tonight, there will be a livestream of a multimedia dance duet titled DESCENT. It stars disabled dancers Alice Sheppard and Laurel Lawson.  The show begins at 7:30 EST.  You only need to create a livestream account if you wish to comment.  Click here to find out more.

 #TheHomebodiesCollective is a new hashtag for people who are at least somewhat housebound or bedbound to connect and share.  There is a conversation for artists and writers (click here) where people can talk shop, find someone to collaborate with, and more.

The next #CripLit Twitter Chat will occur on Sunday at 7:00 PM (EST).  The topic will be Mental Health and Writing.  More information can be found by clicking here.
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A couple notes:

After today's post, guest posts will run automatically on each Friday until everything I have scheduled appears.  There might be a few weeks in December or January where nothing updates.  Or a guest editor may temporarily come on.  It depends.

Also, this blog is slowly starting to expand to include more forms of art on a regular basis (beyond literature).  This space will always be for writers.  But, opening it to other arts is something I see as a natural progression.  I welcome your feedback as always.

Friday, November 9, 2018

Representation in Jacqueline Carey's Starless (Spoilers)

Khai is a blooded, young warrior assigned at birth to be the soul-twin and protector (The Shadow) to princess Zariya.  There has never been a princess assigned a Shadow.  And these two are keys in a prophecy to save the world from a dark and terrible god.

The premise is fairly simple and quite familiar, but the execution isn't just highly enjoyable, it is more than the description promises.

Not the least of which is because of Zariya.  A fierce sixteen-year-old princess, Zariya is the king's favorite child, and is a cripple.  She faces gods, travels seas, and stares down death.  She does it on horseback, in slings, and through the use of her dual canes.  She has a couple moments of self-pity because there are promises of a cure that never materializes, but she navigates the world with a sharp mind and an elemental gift.  And she is physically desired (although nothing explicit or "devotee-like").

I held my breath every time the book spoke of a "cure".  I was positive this would be a book that forced it onto our heroine.  Too many books make the snide claim that crips can't save the world.  Well, not this one!  Sure, Zariya is just one part in the prophecy, but she plays a big one and does it well.

Khai is a Shadow unlike any before.  Born in a girl's body, Khai is made an honorary boy for the purposes of training, though Khai isn't told about their birth sex until nearing puberty.  Ultimately, Khai realizes they are both male and female.  They are one of the best fighters in the world and are loyal.

While I didn't always enjoy the way the world around Khai tried to force them into a female role, I'm sure it rings true to certain people.  The story is told through Khai's perspective.

The world is also populated with humans and mythical beings in a myriad of colors.  Zariya and Khai both have brown skin.

Of course, representation means nothing if it isn't done well.  It becomes intensely diminished if the story isn't entertaining.  Good thing I found Starless a compelling and worthwhile read.


Thursday, November 1, 2018

Our Next Possible Project and Other Considerations

As I ready myself for surgery, I think a lot about this space.  Will I have enough content to keep it going?  Does it even matter if I put this space on hold for three months?  What's next?

I need submissions to keep the blog going in my absence.  Please submit.  Interview a fellow writing cripple.  Send your art and describe your process.  Write a book review.  Tell us what ableist trends you see in publishing.  Wax poetic about your favorite neurodivergent journalists.  The cut-off date for submissions will have to be November 15th.

I often toy with opening the blog to flash fiction and poetry.  I'm hesitant because I don't want this to become a literary magazine, though I think an occasional piece would be a lovely change.  What does everyone think?
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2019 will mark the launch of our Youtube channel, some type of online writers' retreat, or classes on demand (feedback and thoughts are needed).  There will be no cost (ever) to utilize or participate in anything connected to H.U.P.  Because I live on SSI, I know how difficult it is to afford events and education to further one's craft.  Because I live on SSI, I can't afford elaborate websites or to pay instructors and contributors what they're worth.  I also can't apply for grants or do crowdfunding.

I spend a decent chunk of time trying to find ways around the "money issue" for everything I want to give this community.  I rely on volunteers and those who don't mind giving their labor away for a three-dollar pittance.  All I can say to everyone who helps with this space is:  Thank you.  Thank you for every word you've written for me, for each ounce of energy you've spent towards the vision I have for us all.
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Around a month after I come back, we will be taking mentor applications for our program!  If you are (or know) a disabled/neurodivergent writer who would fit as a mentor, keep early February in mind.  There will be at least one mentor needed for promising teens.