About my friend, Wendy Alger, Fine Art Photographer

WENDY ALGER (b. 1972), Chicago, IL, U.S.A.

Fine Art Photography

“Photography. It’s like music … It’s like your favorite song, something you can listen to over and over and over again. You try to explain it to some and you can’t. That’s the feeling it gives me. It’s like traveling and you want to tell everyone how great it was … and I have that experience every time I pick up a camera.” Wendy Alger

My friend, Wendy Alger, is a talented photographer, now still active though legally blind. Wendy pursued the craft of photography as a hobby until another friend of hers suggested that she become a photographer. Wendy thought that sounded just right and a natural thing to do since both her parents were photography enthusiasts. Wendy’s dad supported her new goal and gave her one of his cameras and some lenses. And so the story begins …

At the time when this adventure started, Wendy owned an old ’68 Mustang. She’d drive around, listening to music. When something called out to her, she’d stop and take photographs. Thus Wendy began to learn what subjects appealed. “I photographed everything that felt right and compelled me to keep taking photographs.” Slowly, she discovered the artful photographer within and her own distinctive style. “I enrolled at the Academy of Art University in San Francisco and trained there, where I learned manual SLR. I also learned how to use a dark room.”

I am always surprised and delighted with the remarkable results Wendy manages despite the limitations of her sight due to retinitis pigmentosa. Quite a bit older than Wendy, I cut my own photo visionings using a Brownie and have not graduated much beyond that. My camera is digital, but it’s just a simple budget-wise P.H.D. (Push Here Dummy) camera.  Wendy, however, uses newer, better quality and more complex equipment than mine and tells me that these newer technologies facilitate the practice of her craft.  “I use a digital camera and I can check my pictures on the camera instead of in a dark room. Nowadays, my darkroom is a laptop, Photoshop and Photoshop Lightroom. This allows me to transform and print my images at home. I also use visual memory … I remember feeling to get through a photo session.”

Wendy’s long-term goal:

“To have my artwork displayed in the same building as Walker Evans in my lifetime – not after – during! My vision problems are not stopping me. I never even think about that. After I was diagnosed and as soon as I got the money I bought my digital camera.”

Here is a small gallery of Wendy’s recent work with a digital camera. The photo at the head of the post and the first one below are self-portraits. Wendy’s photographs are copyright protected. You can see more of her work HERE. She’s now in the process of updating her site.

– Jamie Dedes

© photographs, 2011 Wendy Rose Alger, All rights reserved

Photo on 2014-03-31 at 17.16 #3kif_0858-1JAMIE DEDES (The Poet by Day)~ I am a medically retired (disabled) elder and the mother of a married son. The graces of poetry, art, music, writing and reading continue to evolve as a sources of wonder and solace, as creative outlets, and as a part of my spiritual practice. My Facebook pages are: Jamie Dedes (Arts and Humanities) and Simply Living, Living Simply.

The photograph to your right, Portrait of a Photographer, which some will recognize as the photo I used for Wordless Wednesday, is a portrait of Wendy. I guess it might be more correct to say it’s a portrait of the camera not the photographer, though it was meant to capture the spirit in which Wendy works. I took the photograph some years ago when we spent an afternoon at Union Cemetery in Redwood City, Wendy pursuing art and me as chauffeur and tag-along doing the best I could. My own portrait here is a selfie captured using the photo feature on my MacBook. Happy interNational Photography Month.

Still Here: Blogging Against Disabilism

Lone-CyprusToday is Blogging Against Disabilism Day. Disabilism is a Gimp term for the ideology and practice of discriminating against people with disabilities. Discriminatory practices of all forms appear to be on the rise in North America. In the U.S., where all programs that protect minorities are under attack, there has been a growing chorus of calls for the dismantling of the Americans With Disabilities Act.

Contrary to much of the Disabilist propaganda, life remains very difficult for most people with disabilities. Much architectural infrastructure remains inaccessible, and the unemployment rate for persons with disabilities is double the rate of the non-disabled. It is likely most people with severe disabilities have given up looking for employment and are thus not counted amongst the unemployed.

The 90’s were, throughout the Western World, a time of disability activism. In the U.S., many of the activists were Polio survivors. At the time, the everyday world was, far much of the disabled community, simply inaccessible. If one used a wheelchair, one simply could not get on a bus! (The playwright and disability theorist, Kaite O’Reilly recently discussed both the disability civil rights movement in the U.K. and the workings of Disabilism in a marvelous lecture. I encourage you to watch.)

Until our civil rights movement, people with disabilities were largely invisible. When I am in a wheelchair in a crowded space, say a museum, I remain invisible, as people literally trip over me. When I am in India, I am a very visible anomaly: a professional person navigating the world on crutches. (An Indian colleague recently told me that disability cannot be discussed at the moment in India. It is too hot a topic.) Most disabled people in India stay home.

Back in the early 90’s Bill T. Jones, the MacArthur Award winning choreographer, created a piece entitled, Still Here.  The dance gives expression to the lived experience of persons with life threatening conditions, including disabilities. It created a furor! In 1997, Bill Moyers interviewed Bill T. Jones about Still Here. It is one of my favorite hours of t.v.. Not long ago I wrote a post about Still Here and its continued resonance for Native people and folks with Disability. The sad thing is that there are a great many people in North America who would like us Gimps and Natives to be gone, or to at least stay home and out of the way.

Beyond the idea of Disability as label or stigma, is Disability as lived experience. I have spent much of the past few months addressing Polio related issues. Working with a Polio knowledgeable therapist has helped me revisit the illness and its aftermath, understand some of the new challenges I, and other Polios, face, and acknowledge some of the losses associated with Polio. The therapist has given me information to read and poked sore areas of my psyche with skill and kindness.

I am deeply appreciative of the resources, kindness, and training she, and other Polio clinicians have showered on me. I am also grateful to all those who helped me understand the ways the trauma of Polio, and the able-bodied gaze, have shaped my thinking and life. At times. I find myself both relieved and filled with sadness and grief; there are so many losses.

There was a time when I was able, a before and after Polio, although that was many decades ago. My therapist likes to remind me that those without disabling conditions are temporarily abled; disability is always possible. Perhaps that possibility keeps many anxious and avoidant of persons who are clearly disabled. One may pass but probably one cannot hide from one’s disability or from the losses it brings to life. Nor can one hide from Disability itself; Disability stalks everyone.

Oddly, I have the sense of Polio as present and immediate, even in a world where it is thought, like winter’s snow, to have melted away almost to extinction. Polio is a virus, a piece of RNA that infects cells, reproduces itself in enormous quantities, and leaves the cells weakened or dead. It can present as little more than a stomach upset, or leave a person paralyzed or dead.Whether we acknowledge it or not, Polio remains an active presence in our world, especially in the lives of survivors and their families.

As I write, a flock of geese flies over, headed north, and the radio news announces a polio outbreak in Afghanistan in which at least 25 persons have been made ill. I have been rereading Anne Finger’s Elegy for A Disease, and the book lies open on the sofa. It is both a personal and a social history of the disease, an illness with a long history of influencing human lives. I have the sense Polio is sitting with me as I write and ponder, an alive, thoughtful presence, vibrant and well in spite of our efforts to eradicate it. Polio doesn’t seem to be going anywhere.

We Gimps are Still Here as well. We, too, are not going anywhere.

– Michael Watson, Ph.D.

IMPORTANT NOTE: In acknowledging of this day, its importance, and of the challenges disability bring to the lives of the disabled and their families, we are opening Mister Linky for you to share links with us and with readers to your own posts on disability or to a post you’ve read that has moved you to a greater understanding. These do not have to be recent posts. As an alternative, please feel free to leave a link in the comments section.

© 2013, essay (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

Trauma, Story, and Healing

Evening-Sky

He sat on the sofa, pulled deeply into himself, almost disappearing before my eyes, as he told me about his dad’s violence. I wondered whether he knew I was in the room with him. “I feel terribly fragmented; I don’t know who I am,” he explained. “I can’t remember ever being like everyone else; they seem so at home in themselves.”

One of my teachers, a Psychoanalytically oriented clinician, always said the real problem is the second trauma. Her view was the first trauma one encounters sets the stage for PTSD and related problems; the second trauma triggers the cascade. Repeated traumas in childhood physically alter the function of the developing brain, leaving one more vulnerable to new trauma. Even if only one trauma occurs in early childhood the person may remain susceptible to PTSD via a second trauma as an adult.

Read more

PTSD and the Healing Journey

Evening-WoodsThe other night I had dinner with friends. After a traditional ceremonial meal, we watched Skins. I have read about the film, heard others talk about, and planned to watch it, for a long while. The film follows a few months in the life of a tribal police officer on a fictional reservation much like Pine Ridge, and weaves together myth and contemporary experience, violence and healing. Early in the story we are reminded that although humans like to think they are in charge, the spirits shape everything.

Earlier that day I had sat in a local bakery with a couple of medicine women, discussing a Medicine Wheel ceremony we are to hold next month as part of a conference honoring aging. As we come from different traditions and teachings it seemed important to all get on the same page. It turned out we were already in agreement, so the planning went smoothly.

Later, as I thought about the film and my delightful hour at the bakery I decided PTSD (Post Traumatic Stress Disorder) might well live in the North, the place of night and winter. Fortunately, the North is the home of the Ancestors and the place we seek vision; in winter there is little haze and one can see clearly for a long way. The North is often a place where the spirits seem more immediate and accessible.

As the police officer in Skins discovers, healing from PTSD takes patience and courage, and may involve the workings of mythic beings. When we seek a healing for PTSD, we can request guidance from both our unconscious and the spirit world, asking them to give us manageable amounts of information regarding our traumatic experiences, and to aid us find new, more life nurturing, meaning in those experiences. Healing PTSD may become a vision quest, very like going alone to ask the ancestors and spirits to aid us and our communities, to bring us a vision we may live by.

Of course, we are not truly alone. Whether we are challenging the domination of PTSD in our lives, or praying for a vision, there are others, human and spirit, supporting us. We are blessed by the knowledge and caring of those who walk with, and pray for, us, and we benefit from their experience and companionship. Still, they cannot  make the journey for us; we must each walk the healing road for ourselves.

As we walk sun-wise around the Medicine Wheel we discover that when we stand in the North the path before us faces East. East  is the place of birth and rebirth, the home of insight and understanding. It is also the place, in the view of many Indigenous cultures of the Northeastern U.S., where we pass into the spirit world. Sometimes facing long-held trauma brings us an intense fear of death; indeed, the  journey from the North to the East is fraught with both danger and promise.

When we go alone to seek  a vision, or begin the journey of healing from PTSD, we benefit from telling our families and friends, asking them to pray for us, help us prepare, and honor our return. For many, requesting support when healing from PTSD seems shaming; often asking for aid requires as much courage as does confronting PTSD itself. Yet healing seldom happens in a vacuum; we each need the support of others in our lives and on our healing journeys. Let us honor the courage of those who ask for our aid.

Healing PTSD, like any vision quest, is not for the faint of heart.  On the journey we need courage, perseverance, and compassion for ourselves and others. It is a good journey, holding the promise of healing, renewal, and vision, for Self, family, friends, and community.

– Michael Watson, Ph.D.

© 2013, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

The Olympics, Polio, and the Medicine Wheel, Part Two

community-seatingThe Olympics have come to a close; the Paralympics follow. Saturday evening Jennie and I watched a Gimp DVD. She is planning to show it to her Expressive Therapies class, along with some material from Bill T. Jones. Its been a while since we last saw Gimp in performance so revisiting their work was a revelation.

The Paralympics is a much-needed, if under-reported competition for athletes who happen to be disabled. The Gimp Project is a collective of dancers, able-bodied and disabled. The Paralypics is a contest; Gimp is a collaboration exploring the world of disability experience.  The first seeks perfection, the latter revels in the beauty of imperfection. The Paralympics pursue inclusion, abet separate and unequal; Gimp tells stories, often casting light on the processes that marginalize and exclude.

There is a remarkable invisibility surrounding these processes, although many activists, academics, and artists have sought to illumine them. It matters little whether these forces  exclude persons on the basis of ethnicity, race, disability, or other difference, the effect is consistent. The systems are pervasive and largely invisible; they are also profoundly human.

The Medicine Wheel holds all of human experience, offering us a view of life as a whole. There is a place on the Wheel for everything that can be encountered, even a space for our collective fear of otherness and contagion. The Wheel reminds us that we will each encounter all that is, whether directly or through the experiences of others. Our fates are inexorably woven together; the fate of each is that of all.

As we meditate on the Wheel we are encouraged to consider that while they seem real, both safety and isolation are illusory, transitory states. The last few months I have found myself wandering the wilderness that is part of the Post Polio experience. Recent health concerns continue to bring up ancient unresolved feelings, along with worries about the future. I have been repeatedly thrown back to the fear and pain of the acute illness and post-illness recovery, and the social isolation imposed on me as a Polio. I am also reminded the effects of the virus continues to impact my life and thus the lives of those I hold dear.

I’ve been exploring the experience of Post Polio through the wisdom of the Wheel. For me, now, Post Polio lies in the North, the place of aging, teaching, and eventually, making preparations to return to the Spirit World. (The North is also the place of preparation for rebirth!) The journey is complicated as I find myself trying to make sense of my nearly lifelong disability from a place on the Wheel where it is also my task to embrace a declining body.

Part of the task is to acknowledge my fear of erasure. We live in an epoch in which Polio was eradicated; we are, for most purposes, a Post-Polio world. I was taught I had survived the virus and should get on with life, ignoring, as much as possible, the devastation to my body and psyche. Yet the path of forgetting and ignoring is fraught with difficulties; the way of assimilation or “passing” is thorny. The normative prescription offers the possibility of inclusion, yet to follow that road is to participate in a collective act of erasure, to become invisible, and thus lose Self.

Every human being comes to a place where s/he is vulnerable; each of us eventually faces the treat of erasure and the powerful emotions that accompany that threat. In a culture addicted to perfection, and dismissive of difference and need, such moments carry added fear and shame. How odd such an essentially human experience is marginalized, leaving so many to face the North filled with loneliness and dread.

As a society we increasingly relegate the task of accompanying folks on the journey through the North to the health care profession and the clergy. As a result, we have marginalized the insight and wisdom that may accompany disability, experiences of trauma, and aging.  In doing so we create great suffering for the very young we profess to idolize, for we deny them context. How are they, in the face of ceaseless messages about the centrality of competition and perfection, to know they are all loveable, all sacred, beautiful, and desirable in their humanness and imperfections?

Our collective focus on perfection sells products and drives our economy, yet blinds us to the fate of our neighbors and the world. Our deeply held collective desire for safety encourages us to abandon our elders, young people, and children, threatens our very being as a species, and steals our Souls. Still, as prophesy insists, we have options. We can risk relearning the wisdom of the elders, symbolized by the Medicine Wheel, accept the complexity and terror of being human, and journey together into a Sixth World. There are, if we make it so, seats for all at the table.

– Michael Watson, Ph.D.

© 2013, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

The Olympics, Polio, and the Medicine Wheel, Part One

Snowy-MorningEditor’s Note: This is the first of a two-part piece on Perfectionism originally posted on Dreaming the World. Part II will post here tomorrow.

I am an elder, and as such I am given the task of teaching and supporting the young. On the Medicine Wheel of this lifetime I am in the Northwest, the place of honoring the challenges of my life, understanding them as best as I am able, and sharing what I have learned with others. Perhaps you will share your thoughts about the experiences I share below; I would greatly value that.

We, along with many others, spent a good deal of time during the past two weeks watching the Olympics. Over time we noticed, especially from NBC’s coverage, that the commentators seem to believe winning and perfection were all important. This is a sad thing. One does not have to watch much before one becomes aware the announcers are ceaselessly pointing out errors and failures. Rather than empathy for the competitors, one is barraged with demands for perfection and minute details about failure to achieve such.  There is very little celebration of the athletes who fail to meet the announcers’ or judges’ criteria.

This hits home on two fronts. The first is cultural. I was raised to appreciate the efforts of all. Winning is fun, but should not shame others. Nor should anyone be left behind after the games are over. Further, perfection was considered suspect. One was advised to build imperfection into one’s art and welcome it in one’s life. After all, we are not the Creator although we are aspects of His/Her creation. Only the Creator can be perfect, and it is likely even S/He makes mistakes; as we are reflective of the Creator this suggests that even mistakes can be good and holy. The unbridled pursuit of perfection endangers the individual and the culture, the community and the ecosystem.

The second part is I am a survivor of Bulbar Polio. My phsysiatrist says I am “a walking quad”; rather than disparaging, this is a simple statement of truth. I have severe neurological injuries; Polio destroyed motor neurons all over my body. My arms and hands have considerably diminished capacity; my legs and feet lack strength and mobility; breathing can be a challenge. I am not perfect by the dominant culture’s standards.

Add to this my Native American heritage and the soup becomes thick indeed. I once heard a man, who understandably thought he was with other Europeans, say something like,  “There is nothing more pathetic than a disabled Indian.”  What are we to do with that? Indeed, what are we to do with NBC’s virtual silence on the topic of the Para-Olympics?

Herein lies the difficulty. One one hand I was encouraged to accept  and honor imperfections. On the other, as a Polio survivor I was taught to do my level best to pass as normal, to overcome limitations, and to forget my illness and its  aftermath. Additionally, as a child in a Native family that was actively passing, I was taught to be invisible, a lesson that surely applied to Polio as well.

It is a profound challenge to resist the limiting messages of our families and the dehumanizing ones of the dominant culture. I have done my best, yet I have also spent much of my life seeking to achieve others’ views of perfection, even though not even normalcy was not an option.This has been painful.

I don’t know whether you have ever thought about the Wounded Healer.  In Traditional cultures ill youngsters are often expected, should they recover, to become healers. I use the term “recovery” loosely. Youngsters who face and survive catastrophic illness may not have the same physical capacities as their normative friends. Yet their illness may also give them abilities and insights not readily available to others. When the child is ill the healers do their best to aid. They also seek to discern the nature of the illness; often such illness are understood to be calls from the spirits, initiations into the realm of healers. When there is a spirit call, training in the healing arts accompanies recovery. The illness frequently leaves a footprint in the life and work of the survivor; he or she becomes a wounded healer, knowledgeable about many of the territories and challenges that accompany illness.

This is a different model than the academic learning focus of the West. Of course, the two paths are not mutually exclusive. Indeed, they may intersect, even overlap at times. Both address the needs of the body. Some Western trained healers have adopted the Indigenous understanding that the soul and psyche must also be attended to.  (Milton Erickson, although not to my knowledge Indian, comes to mind as someone who walked both roads well.)

I have come to this point on the Medicine Wheel by living my life from within this severely injured body. This is a sharp contrast to the physically perfection of elite Olympic athletes, or the health and wealth gurus we see on PBS and on innumerable infomercials. The television sages convey the message to us that illness, poverty, loneliness, and all other forms of suffering are moral failures. They do not speak this directly, rather they hold up their carefully managed perfection as a mirror to our human frailties. They offer advice, even salvation; for a fee we can be just like them. But I, and many others, cannot.  The very lifestyles they espouse harm us, and endanger our precious planetary ecosystem and all that lives therein. Where, I wonder is their wisdom and compassion?

We approach the Spring, the East in the Abenaki view of the Medicine Wheel, the place of rebirth and awakening. I am curious how my changing understanding of this beloved, traumatized body will blossom in the coming year.  I wonder whether our culture can set aside the deeply held values of independence, competition, and perfectionism that shaped the  our country (the very ones espoused by those television commentators). Can we own our imperfections, and acknowledge the harm we have inflicted on ourselves and so many others, inside and outside our country? Can we embrace those who suffer illness, poverty, displacement, abuse, or isolation?

As we follow the journey of the sun into the East, we are invited to begin again, to open our eyes and practice compassion and understanding. May we  find the courage to do so.

– Michael Watson, Ph.D.

© 2014, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

drawing the world back into ourselves … celebrating Lung Leavin’ Day

Heather Von St. James is an eight-year survivor of mesothelioma – a rare cancer caused by asbestos exposure. She initiated Lung Leavin’ Day to encourge people to face their fears, whatever those fears might be. Together she and Jamie Dedes share some of their experiences with and victories over Interstitial Lung Disease (ILD) and encourage you care for yourself.

THE POET BY DAY

“Breathing involves a continual oscillation between exhaling and inhaling, offering ourselves to the world at one moment and drawing the world into ourselves at the next…” David Abram, Becoming Animal: An Earthly Cosmology

469px-Lungs_diagram_detailed.svgBreath: So necessary to the maintenance of life and so often a metaphor for life and spirit. Every year around this time, I take advantage of my blog to change the subject and write about diseases that harm the mechanism of breath, our lungs. I don’t do this to draw attention to myself. I do it to draw attention to the lung disease. I want people to be aware because Interstitial Lung Disease (ILD) can go undiagnosed or misdiagnosed and unattended for too long adding even more devastation to what is frankly horrific.

This year I was contacted by Heather Von St. James who wrote to me saying, ” I am an 8-year survivor of mesothelioma – a rare…

View original post 638 more words

Stepping out of devastation: “Level Up” with Vienna Teng, featuring b-boy Tommy Guns-Ly of ILL-Abilities

Our thanks to Laurel D. for sharing Vienna Teng’s video with us …

This crowd-funded (Kickstarter) video by the remarkable singer and song-writer Vienna Teng was released in December. The song Level Up is featured in her album Aims which was released last September. In this video, Ms. Teng moves through four scenes of devastation including one featuring b-boy Tommy Guns-Ly, dancer, bone cancer survivor and amputee. Tommy Guns-ly is part of the ILL-Abilities crew.

“Originally created in 2007 with the idea of being a “Super Crew” of disabled dancers, it is now becoming a global movement helping to spread the message: No Excuses, No Limits. ILL-Abilities’ mission is to redefine society’s view of disability, promote empowerment, and encourage limitless possibilities through motivational entertainment.”
Source: Breakin Convention.

“I am unstoppable.” Tommy Guns-Ly

luminous – short prose

She sat there, with the precious stillness of a Tanagra, frozen beneath the cascade of magnolia petals – and all that sunrise was able to do was to jewel her aura with fiery reflexes, as if she was Amaterasu herself, borrowing for a while the limits of flesh with the sole purpose of proving the beauty of her infinity. I was unable to move, unable to make a sound, and for a moment I thought I would see her suddenly float and fly away, her body soaked with light and my eyes drained of all will to blink. Even her voice sounded as if woven from glints, when it stretched towards my senses like an invisible limb:

– The sun doesn’t always rise with the same brilliance. There are dawns when, for various reasons (all, or almost all of them of a scientific nature, of course) what you see growing above the line of the horizon is not that imposing disk of glowing majesty, but a shy red roundel, mat and exuding insecurity, as if it were born untimely from sky’s bleeding wombs. But if you stay there long enough and stare at it, you will witness the victory of plasma over atmosphere and soon the cells from your retina will be burned, as punishment for daring to assist at the visual metamorphosis of our closest star, as if your gaze would have somehow stained that moment of vulnerability…

She paused for a second – a long, ethereal, suspended on the tip of her gaze second – and then she continued:

Sparrow_on_snowy_branch– I’ve watched such sunrises more than just once from the window of my room. There were times when I saw the sky being flooded with raw sunlight and then suddenly a sparrow with eyes of onyx would come and sit on a branch of the elm tree growing right next to that window. It looked at me cautious, first with an eye, then with the other, and then it would suddenly release from that tiny throat a sample of happiness and freedom, as if to demonstrate me that joy can be found even in the simplest of things. It was that sparrow that taught me how to feel free, beyond the wheels of this chair, and not a sunrise goes by without me hoping you’d find your own sparrow, my son…

© 2013 Liliana Negoi

The photo attached was taken by Lewis Collard,

IMG_7667LILIANA NEGOI  (Endless Journey and in Romanian curcubee în alb şi negru) ~ is a member of our core team on Into the Bardo. She is the author of three published volumes of poetry in English, which is not her mother tongue but one that she came to love especially because of writing: Sands and Shadows, Footsteps on the San – tanka collection and The Hidden Well.  The last one can also be heard in audio version, read by the author herself on her SoundCloud site HERE.  Many of her creations, both poetry and prose, have been published in various literary magazines.

Escape from the Nursing Home

“Your mother has escaped from the facility,” said the nurse on the phone.

file9591250747852I was still in Sacramento. I had just thrown my suitcase into the trunk of my car, and I had wanted to call the nursing home to check on my mom and her progress in physical therapy, one last time before I left for San Diego.

“Escaped? What do you mean, escaped?”

“Nobody knows where she is, sir.”

“How is that possible?”

“It looks like she just got out of her wheelchair and walked straight out the front door, past the front desk, when the receptionist was away. We’ve called the police,” the nurse assured me.

“What did you tell them? To look for an eighty-year-old woman in a hospital gown, pushing an I.V. pole?”

“They’ll find her, Mr. Young.”

“She was supposed to go home tomorrow.”

“I guess she couldn’t wait that long.” The nurse laughed. When my silence conveyed that this wasn’t funny, she said, “Don’t worry, sir. Residents escape from here all the time. We almost always get them back.”

“She has aphasia. Do you know what that is? She can’t speak clearly, because of her stroke. She can’t tell anybody who she is or where she lives. What if she gets hit by a car?”

“We’re not liable, Mr. Young.”

“What?”

“Your father signed our waiver form, which releases us from liability for bed sores, falls, and unauthorized self-release from our facility. It’s a condition of admittance.”

“This is unbelievable. I was just about to drive down to San Diego to help my dad bring her home and start caring for her.”

“You’re aware that she’s going to need twenty-four-hour supervision in your home, aren’t you? Otherwise she might start walking around, fall down, or even try to escape from your house in the middle of the night.”

“If your entire nursing staff can’t supervise her, how in the world are my father and me supposed to do it?”

She lowered her voice. “I took care of my own mother at home for ten years, sir. I thought I was going to go completely out of my mind.”

I drove toward San Diego with my heart dropping through my chest and stomach. I had never known this much stress in all my life, not knowing where my mother was or what was happening to her. Or what would happen once we found her and brought her home. A perpetual state of emergency was becoming the most powerful reality of my life. I didn’t yet understand that accepting a continuing sense of uncertainty would become my greatest source of strength.

When I called the nursing home from two hundred miles down the road, they had found my mom. She had never made it out of the parking lot. She was walking between the cars and the SUVs, too short to be seen, until a driver just avoided striking her.

When I reached San Diego it was dark, but I went directly to the nursing home. As I hurried into my mother’s room, she glanced up at me from bed and, with the lucidity that aphasiacs exhibit when they’re surprised, she said, “Oh, it’s my son. Let’s go home now.”

I bent over to kiss her on the temple. “Mom, how are you feeling?”
“Window face,” she said, “hotel hotel hotel—and oil.” For the rest of the visit, as I tried talking to her, she replied with her enthusiastic, broken aphasia.

Sharing the room was an elderly man with a group of Mexican women sitting around his bed. My mother is Mexican, but I don’t look Mexican, so they felt free to talk about my mom in Spanish:

“That poor old woman is crazy.”

“She said she has a boat waiting for her outside. She has Alzheimer’s.”

“She ran away today. They ought to lock her up in a closet. She’ll try to walk across the freeway.”

“It’s a shame. I’m glad we don’t have that in our family.”

“It’s hereditary. Her whole family will turn out that way someday, including all of her children and grandchildren.”

Rage blackened my mind so quickly that, for a moment, I was dizzy. Although I’d never heard the word aphasia before my mom’s stroke, I was now outraged for the rights of all the aphasic people of the world, for their right to express their needs, for their right to be understood, for their right not to be falsely labeled.

Yes, my mother’s ability to process and produce language had been compromised, but she knew exactly what she was trying to say, and she could understand most of what other people were saying. She was not a crazy person, nor did she have Alzheimer’s, nor was she “demented.”

I waited until the women had left and then I kissed my mother again and told her not to worry about anything people said. She nodded with relief. “In oil, in oil. It is their face, it is their windows.”

Her spirit—the same spirit that had led her to escape from a nursing home that she did not like—was intact.
The next morning, my father and I came to take her home. Together, we cared for her for four months, until my dad had a stroke and was paralyzed on the right side. Now I had two infirm seniors on my hands.

I cared for my mom for 45 months, until she passed away in May, 2012. I continue to care for my dad every day. I’ve been a caregiver in my parents’ home for 61 months now. I’m proud that my parents have been able to live in dignity and freedom in their own home, without being institutionalized. This is the most important, rewarding, and illuminating work that I have ever done.

Any person with a compassionate heart can learn to be a caregiver. This means that you can do it too.

– Robert Clark Young

© 2013, article and portrait (below), Robert Clark Young, All rights reserved
Photo credit ~ courtesy of morgueFile

RCYoungROBERT CLARK YOUNG ~ is a guest writer on Into the Bardo. He has worked as a caregiver in his parents’ home since 2008. “Escape from the Nursing Home” is excerpted from his book, THE SURVIVOR: How to Deal With Your Aging Parents, While Enriching Your Own Life. The book seeks a publisher.  Robert’s other books are One of the Guys and Thank You for Keeping Me Sober. Visit his eldercare website  HERE. His Amazon page is HERE.

Editorial Note (Jamie Dedes): In addition to being a caretaker, Robert is an accomplished novelist, writer, and editor. I first “met” Robert several years ago when he was the creative nonfiction editor for an online literary magazine. In submitting his bio to us, he was understated about his mission, which is an important one.  He notes on Amazon:

“According to AARP, 61% of family care providers are women, with the typical caregiver being a 46-year-old female who is caring for one or both parents. Of the 39% of caregivers who are men, a majority are husbands of senior women, rather than sons. This gender imbalance in eldercare is one of the things we need to work to change.

“I’m unusual in being a male caregiver. One of the goals of this book is to help people understand that men can–and should–become nurturers.

“But my greatest wish is that this book will become a vital lifeline to everyone who, overnight, must face what first appears to be the devastating challenge of eldercare–a challenge that opens the way to unexpected growth and fulfillment for the caregiver. There is nothing to fear in eldercare. There is only joy, growth, and love.”

Accesibility and the Dharma or The Pitfalls of Cherry Floors

Vermont Zen CenterA few weeks ago we attended the 25th Anniversary Celebration at the our local zen center. The day was splendid, and the ceremonies moving.

I have had a rather rocky relationship with the Zen Center due to issues of accessibility. Sometimes the Center has been very accommodating, other times attending functions there has been a challenge. Visits go best when I remember to bring my own slippers. Unfortunately, on the day of the Anniversary Celebration my slippers were at the office and I forgot to stop and pick them up.

The Zen Center has beautiful, very slippery, cherry floors, and I do best there when I can keep my brace and shoes on. For the celebration the staff of the center provided surgical slippers to those of us who need to keep shoes on. Unfortunately, the surgical slippers proved to be very slippery, and I had difficulty keeping my balance even with crutches. After the formal ceremony we left the Center building to attend a Taiko performance outside. When others returned to the building to listen to a storytelling performance I chose to remain safely outside.

During lunch I spoke about accessibility issues with some of the Zen Center staff. The gist of the conversation was that the Zen Center policy places protecting the cherry floors above providing accessibility for disabled visitors and members. It also became clear the policy is a source of discomfort within the center.

Since the celebration I’ve been wondering about the tension between the lack of access at the center for us folks with mobility issues, and the Buddha’s insistence on making the Dharma and Sangha available to all. I also wonder how it could be that in a structure so lovingly designed and built there could be so little attention to accessibility.

Very much like the monks in one of my favorite zen stories, I’ve crossed that river but seem unable to put this one down.

Michael Watson, Ph.D.

© 2013, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.