Posted in Art, Creative Nonfiction, Illness/life-threatening illness

Illness ~ My Pencils Cured Me ~

Dear Writers and Readers,

Some thoughts from the lighter side of life, from my world of pencils.

Have you ever thought … No, you must have: “That how valuable pencils are?” The pencil point these days has become a flat surfaced button. Well for me the long slim sleek colorful object is a golden piece of eight, a priceless possession.

Ever since awareness of being alive touched my mind soul and spirit I found out that my closest friends and companions were materials for writing, coloring and drawing. Pencils of all kinds, not often new, but reduced in size, chewed a bit at the end. They would be small color pencils mostly because the larger ones were expensive. Another awareness!! Pencils made in USA which somehow always reflected yellow color and had a deep red eraser at the other end. Faber Castell HB 2 Drawing pencil … and then came Deer….Oh Dear , Oh Dear, Korean multi-colored, transparent! AH! What a thrill to see the lead inside. What is it that writes? What is it that creates those lovely patterns? What is it that traces the mystic mazes on the empty spaces?

And then….

Pencils in front of me
Pencils beside me
Pencils to the left of me
Pencils to the right of me
A pencil in my hand, all the time a diary within reach
I think I dream I talk I speak I write and I love to Teach;

Once illness made me still, I could not move my body I was so weak, but I could hold a pencil, and I had strength enough to slide it across the page while I was glued to the bed. I found out that a pencil would take less energy to write and what was written could be changed.

When there was no one near me, there was my pencil. It gave me security. It gave me courage. It kept my mind alive. I thought with it. I spoke to it and it spoke to me. It gave me ideas. It made me move on in time. As the days passed, my illness slowly faded away. The pencil under my pillow said, “I will be well,” and see now how I am? A little bit is used at a time and then refreshed, turned, twisted, forced and sharpened and shaped, ready to begin work again.

Slowly I play my part and fade away.  As I grow little I am then put away in a box I am now small and thin. I look around and I see at least four pencil containers. They are two each on my two writing tables. Yes! Two! The third table is for the computer. They all housing my pencils, which are braving the world with me.

So keep . . . 

  • more than one pencil container … preferably mugs since they look nice and have attractive pictures designs and quotes on them;
  • your pencils sharpened as a ready pencil saves time and ideas;
  • mixed color pencils in one container for inspiration and encourage;
  • pencils with erasers to help you focus your mind:  and
  • light and dark pencils to give variety of style and development of variegated thoughts.

My stories are many, as many as my pencils, I have a Teacher pencil and a Dreamworks LLC Aardman pencil. Have you ever heard of that one?

I am well now and have begun my travels from the USA to UK. That reminds me of the precious pencil from the UK, from the land of Robin Hood of Nottingham. I can see the green cap with the feather on it. Lovely! The other from England is shaped like a STOP sign at the end and is red and white in color, a reminder of Conservative Traditions, Rules and Regulations. It is a good sign. It keeps us disciplined.

So the journey continues, and I sing as I write, ‘My heart will go on, My pencil will go on…….on … more on pencils and pens to come.’

© 2020, Anjum Wasim Dar

ANJUM WASIM DAR (Poetic Oceans) is one of the newest members of “The BeZine” core team.
Anjum was born in Srinagar (Indian occupied Kashmir) in 1949. Her family opted for and migrated to Pakistan after the Partition of India and she was educated in St Anne’s Presentation Convent Rawalpindi where she passed the Matriculation Examination in 1964. Anjum ji was a Graduate with Distinction in English in 1968 from the Punjab University, which ended the four years of College with many academic prizes and the All Round Best Student Cup, but she found she had to make extra efforts for the Masters Degree in English Literature/American Studies from the Punjab University of Pakistan since she was at the time also a back-to-college mom with three school-age children.
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Her work required further studies, hence a Post Graduate Diploma in Teaching English as a Foreign Language (TEFL) from Allama Iqbal Open University Islamabad and a CPE, a proficiency certificate, from Cambridge University UK (LSE – Local Syndicate Examination – British Council) were added to  her professional qualifications.
 .
Anjum ji says she has always enjoyed writing poems, articles, and anecdotes and her written work found space in local magazines and newspapers. A real breakthrough came with the Internet when a poem submitted online was selected for the Bronze Medal Award and I was nominated as Poet of Merit 2000 USA. She accepted the Challenge of NANOWRIMO 2014 and Freedom is Not a Gift, A Dialogue of Memoirs, a novel form was the result. She was a winner, completing her 50,000 word draft in one month.
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Although a Teacher and a Teacher Trainer by Profession, she is a colored-pencil artist and also enjoys knitting and is currently trying to learn Tunisian Crochet.
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Memoir writing is her favorite form of creative expression.

 

Posted in poem

Illness ~ Mosquito’s Gift

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Oh what shall I say about this fever of mine
in the morning it’s normal, in the evening 99

The body shudders and shivers and quivers
sweat pours out like a rushing gushing river,

the liver and spleen get  painful and enlarged
with bitter quinine mixtures one is charged,

you may forget that the mosquito net will
block the tiny insect, day or night, it flies

from cool nooks, to suck human  blood in pure
delight as it swings, sings and dances in to bite,

weak and restless drained of strength  and ease
the body is pale, enlarged are the liver and spleen,

what gender mosquito may be the cause, culprit
is the female Anopheles, that brings this disease

even if tons and tons of DDT we spray, the insects
don’t die, they breed and  grow and stay and stay,

we may say, strange is the law of nature creator, but
insects, birds, animals wild and tame, have rights-

there is a strong purpose of the tiny insect, in history though
It killed the cruel one, flying in his nose, biting the great Pharoah-

to live breathe eat kill or die, face all troubles and strife
they are inhabitants of planet Earth, and have a right to life.

© 2020, Anjum Wasim Dar

 

Posted in disability/illness, Illness/life-threatening illness

Reasonable Expectations

When you meet a new doctor, you’re allowed only a few sentences to communicate everything about who you are, where you’ve come from, which details of your health history are the important ones, and to convince them that you can in fact be trusted to accurately represent your own health problems. That is, if you can get to a doctor in the first place. 

When I injured my sacrum in 2014, I didn’t see a doctor about it until more than a year into its slow healing. I didn’t have health insurance and I was pretty used to powering through health problems so I just dealt with it on my own. 

When I learned that my income was low enough that I would qualify for state-funded health care, it took me another whole year to overcome my anxiety about not understanding the healthcare system in order to apply, only to discover that there were no doctors in my city, not a single one, accepting new patients with my insurance. State-insurance cards by default included a spot for the name of the doctor who had been assigned to you. Mine was blank. 

I spent another few months overcoming my anxiety again in order to spend hours on the phone asking if anyone knew of a doctor who would still take me.

I found one and was told that her first new patient appointment was three months out but if I wanted, I could come in and wait and see if anyone canceled. It might be up to 4 hours of waiting and I might not be seen at all. The never-ending aching pain in the shape of a crescent on the left side of my lower back would not take four hours of sitting in waiting room chairs. I waited the three-months.

Black and white soft focus photo of a class stethoscope sitting on a muslin sheet. Photo courtesy of Hush Naidoo, Unsplash

By the time my appointment arrived, I had already done plenty of my own research on the many mystery health issues I was juggling. I told my new doctor that I thought I had Ehler’s Danlos Syndrome, a hypermobility disorder that can affect the connective tissue in your entire body. 

I told her about reading a book on EDS and placing 32 sticky notes among the pages, one for each symptom that I recognized in myself. I told her about my sacral injury that didn’t get better despite everyone telling me it would. I told her about manipulating my body and discovering that my feet and ankles collapse when I put weight on them and that my whole legs turn inward when I stand, and when I re-read the book, I saw a picture of someone with feet, ankles, and legs that looked just like mine do. I told her about how my friends make fun of me for the massive quantities of salt I put on my food, and how the book said that the recommended treatment for EDS related cardiovascular problems was increased salt intake. I told her about getting fillings as a teenager and squirming away as they drilled on my very much not numb teeth and reading in the book that people with EDS metabolize lidocaine faster than average and generally consider trips to the dentist as torture. I gave her my laundry list of places that I had pain, starting at the top of my body with ice pick headaches and ending with my feet that burned and stabbed when I stood on them at work for hours.

After listening to my pitch, the doctor had me stand up and poked and prodded me in my hips and legs, occasionally asking, “does this hurt?” I was wearing thick jeans over leggings so I barely felt anything. “Do you run?” she asked. I thought she was joking but when I saw she wasn’t, I just said, “No, I can’t.” She looked confused. She asked if I did this hip stretch like so and I said, “No, I can’t.” I attempted the stretch and showed her my very limited range of motion. She looked even more confused.

With little to no discussion of the source of my pain, she prescribed me a muscle relaxant and started to end the appointment. My heart sank. A muscle relaxant would not stop my joints from being unstable or help my sacrum get better any faster. It might even make me worse.

To her credit, the doctor noticed: “It seems like you’re disappointed. Was there something else you wanted to talk about?” I nodded and told her I had hoped for a more active and solution-seeking approach. I had been symptom managing for months. I wanted to finally get to the bottom of my health problems.

My therapist had warned me that I should prepare myself for push-back on my self-diagnosis. Doctors rarely take kindly to patients diagnosing themselves. I was prepared for disagreement, prepared for less interesting theories, prepared for testing and investigation before confirmation. 

What I didn’t expect was dismissal.

At the beginning of the appointment, I had been asked to rate my pain on a scale from 1-10, with 10 being the most pain I could possibly imagine. I had given a 1 for my wrist and a 3 for my hip. My doctor asked me what improvement I was expecting from level 1 pain in my wrist? “You need to have reasonable expectations about your goals here,” she said. “As you get older, your body is not going to work perfectly anymore. It’s never going to work like it did when you were fourteen. Things just… break down over time. That’s just how things are.”

Her words blurred and ran together, doubt flooded my brain and seeped under my eyelids. The pain scale isn’t designed to represent the range of pain levels and different types of pain that are common in a chronic condition, and she hadn’t asked me for the highs and lows of the week, she had asked me my pain level on a low-key low-impact day. Of course my numbers didn’t reflect an ongoing severe problem. My numbers only reflected how I happened to be feeling at that moment in time. 

But I was so overwhelmed by self-doubt that none of that clarity came to me. Was my life falling apart from normal amounts of pain that are a natural result of getting older? At 26 years old, was pain in every one of my joints considered normal? 

The medical practitioners that know me see me week after week describing the mountains I’m hurdling and almost never see me cry. When I do, they know right away that I’ve been pushed past my limits and that I am Not Okay.

But this doctor didn’t know that. The tears started coming and they wouldn’t stop, my voice breaking and trembling. 

Was it normal to experience a crushing sense of loss because I had to stop dancing, to protect my hip alignment, and I was never able to start again? What about the way my hand would seize and contract when I tried to play guitar for even a few minutes, and my inconsolable grief when it hit me that my wrist, just like my sacrum, was not going to get better anytime soon? Was it normal that I had an elaborate schedule –breakfast, hour long pain management routine, sit for 30 minutes, stand up for 15 minutes, sit for 30, stand for 15, repeat until too tired to stand– that I developed so that I could get things done and not end my day at 5pm crying from pain? What about the long hours that I stood at work, my sacrum throbbing, my feet and legs and arms and wrists aching, counting down the minutes and trying not to let the pain show on my face as I used my precious resources to cheerfully ask yet another customer if they wanted a bag today? Was that just a simple side effect of getting older? What about every tiny risk assessment, every conscious muscle engagement, every task that I said no to, every absolutely required self-care to-do added to my daily list, that had been my everyday reality for more than a year? 

Black and white photo of a woman’s bare back. She is hunched over, emphasizing the knobs of her spine. Photo courtesy of Jairo Alzate, Unsplash

She tilted her head sympathetically and said, “Have you been feeling depressed?” A passage from an article I read flickered through my brain: on average, women have to report significantly higher pain levels than men do before they are prescribed pain medication, and that instead, women were more likely to have their pain categorized as a mental illness. I remembered this briefly before saying, “I do have a history with episodes of depression but I have not been feeling like I am in one, no.”

The doctor proceeded to write me a prescription for an anti-depressant that she said also can help with pain. I blinked, confused. Hadn’t I just said that I wasn’t experiencing depression? I protested weakly that this didn’t make sense but she said, “You want to be active and try something? Well, let’s try something. Let’s try this!”

Tears were still falling down my face but I nodded, my brain still filled with white noise as she walked out of the room. Did she believe me that I was in pain? Did she hear the ways it was impairing my daily function? Is it reasonable to expect this level of physical difficulty at age 26? Did she listen to me at all?

I shakily walked out of the exam room, down the hall, and ducked into the bathroom. I put my face in my hands and cried silently, trying desperately to get a grip on myself. But I couldn’t. I was broken into a million tiny shards and there were too many to pick up in 10 minutes. I washed my face as best as I could and headed to the receptionist to make another appointment.  Their earliest slot was in five weeks. 

They asked me to fill out a feedback form about how well they had helped me today. I declined.


I cried as I walked to the bus stop. I cried as I bussed home. I cried as I walked up the stairs to my apartment and I cried as I walked in the door. This low-level crying was all I could do to keep from collapsing into uncontrollable sobs. Only when I reached my boyfriend’s arms did I let it all out. I told him everything and then I called several of my best friends and I told them the story again. I didn’t really stop crying for several hours, hoping each re-tellings would relieve the sensation that the foundation of my Self had cracked. At some point, I vaguely realized that the appointment had been traumatic and that I now had a new trauma to heal from on top of my already longer than average list.

In the weeks that followed, I learned that my friends with chronic illness, chronic pain and disabilities have all been traumatized by doctors visits; practitioners doubting them, assuming mental illness and sending them to psychotherapists, ignoring their files and giving them medication they were allergic to, delaying crucial treatments due to incorrect diagnoses, invasive procedures without consent, over and over and over again. They had long lists of experiences like mine. This was just my first one.


This article was originally published on yoppvoice.com as “26” on March 25th, 2017.

Kella Hanna-Wayne

KELLA HANNA-WAYNE(Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in Disability, disability/illness

Interview with Secular Sexuality on Sex and Disability

A few months ago, Vi La Bianca, a previous guest writer for my blog Yopp, invited me to be on her YouTube show Secular Sexuality, a show that looks at every angle of sexuality that you can think of, with an emphasis on noticing how mainstream US culture has shaped our opinions and practices around sex. I was invited specifically to discuss the intersection between sex and disability, which is a topic many people are deeply uncomfortable with. 

I wanted to share and recommend this episode because, in addition to offering a lot of very useful advice to fellow disabled people and their partners about how to engage with sex and dating, a large portion of the show is devoted to discussing important issues that disabled people face in general. 

This is not the first time I’ve been invited to an interview of this kind, and while my interviewers tend to be highly knowledgeable about activism and social justice, it always takes them by surprise just how much is happening within the disability activist community that they don’t know about. Disability rights are a severely neglected branch of social activism, even among some of the best and most thoughtful mainstream activists. 

So, if you’re looking to get a glimpse into this world of issues as well as a lot of information specifically about sex/dating and disability, I highly recommend watching this really fun and educational episode! The video is one hour and thirty-six minutes long, including two live callers who share their experiences of how disability affects their sex lives. Not Safe for Work themes and language are also covered. 

Here’s a brief summary of the topics we cover: 

General discussion of disability

  • the language used to discuss disability
  • a new modern framing of disabled people (covered in my recent article)
  • how we can improve the amount of access available to disabled people
  • ADA violations and the lack of input from the disabled community on accessible design
  • the intersection of being a woman in addition to being disabled/chronically ill
  • the hurdles of navigating the medical system (primarily regarding the US)
  • disability representation is fiction and media

Disability and dating/sexuality

  • the difficulties of dating while disabled
  • the issue of disclosure (”coming out”) as disabled
  • cultural resistance to the idea of disabled people having sex
  • the fetishization of disabled people
  • exploring your sexuality as a disabled person
  • communicating with your partner about how your disability will impact your sex life
  • putting your needs and physical safety first

You can watch the episode, for free, below. Enjoy!

If you are viewing this post from an email subscription, you may have to link through to the site to view this video.


Kella Hanna-Wayne

KELLA HANNA-WAYNE (Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in disability/illness

Three Poems by Assamese Poet Guna Moran, Translation Courtesy of Bibekananda Choudhury

Courtesy of Jan Kopřiva, Unsplash

SNAKE

I frisson on seeing a snake

As if the long venomous tongue jutting out
Would bite me lethally
Instantly on seeing

But the number of death
Bitten by long pointed tongues
As thousand time less
Than the number killed by
Blunt tongues

Failure far exceeds the achievements
The fear of losing in achievement
is not there in failure

As the fact
How heartbreaking s the sorrow
Of losing after having
Compared to
Not having at all
Is vivid in memory of the snake
It juts out its long forked tongue
So that none can settle at a desolate corner of its heart

The tongue is the impenetrable sentinel
Of the inner world of the snake
Visitor takes to its heels
On seeing the guard
But snake do not chase to bite anyone

Actually
All the snakes are innocent
We are indeed
Panicky

SLEEP

Sleep is bliss
Death is bliss too

The first one is not permanent like the second
But the transitory is favoured to the permanent

Fatigue after gratification
Sleep after fatigue
Gratification possible following sleep
Gratification impossible after death
That is the reason
The second one is everyone’s favourite

We are basically punters
Punters need more sleep

ILLNESS

Now

She cooks meals
I devour

She washes the clothes
I put on

She is responsible for
Fetching the children
To and fro from school

She is responsible for
Receiving guests and relatives

Marriage and functions
Meetings and discussions
Are her responsibility

She is like a bobbin
Since waking up
Till retiring to bed at night

I just give a call at time
She appears in a whiff

That I fell in love one day
I forget altogether

© 2020, Guna Moran; Translation Bibekananda Choudhury

GUNA MORAN is an Assamese poet and critic. His poems and literary pieces are published in national and international magazines, journals, webzines, newspapers and anthologies such as –
(i) Tuck magazine (ii) Merak (iii) Spillword (iv) Setu (v)Story Mirror (vi) Glomag (vii) Poem Hunter
(viii) The Sentinel (ix) The Hills Times (x) Litinfinte (xi) Best Poetry (xii)Academy of the Heart and Mind (xiii) The Creation times (xiv)Infinite sky (xv) International Anthology of Poems on Autism (xvi) International Anthology on Water (Waco Fest Anthology 2019) (xvii) International anthology on TIME (xviii) THE VASE : 12th Guntur International Poetry Fest Anthology 2019. (xix) POETICA : The Inner Circle Writer’s Group Poetry Anthology 2019 (xx) Nocturne (poetry of the Night, An Anthology). (xxi) Phantasmagoria Magazine.Apart from this, his poems have been translated into Italian and French, Bangla language also.

BIBEKANANDA CHOUDHURY, an electrical engineer by profession working with the State Government of Assam has completed his Masters from BITS-Pilani. He has also earned a diploma in French language from Gauhati University. He has got published works (both original and translated) in Assamese, Bengali & English in popular periodicals and newspapers. His translated poems have been published in ‘Indian Literature’, the bi-monthly journal of sahitya akademy. ‘Suryakatha’, the Bengali adaptation done by him of the is being taught in the undergraduate Courses of Banglore University and Post graduate Courses of Gauhati University. A collection of 101 folk tales from the foothillsof Patkai translated by him has also been taken up by publication by Gauhati University. He is presently the editor-in-chief of Dimorian Review a multidisciplinary web journal.

Posted in Illness/life-threatening illness, Poems/Poetry

Cancerland

Out with the old, in with the new could

apply if refers to surgery to remove

urinary bladders all studded with tumors

that don’t respond to chemotherapy

administered intravesically through thick

catheters oy ugh inserted in penises.

 

With this dim prospect of employing such

a big procedure which’d fashion

a bit of large colon into a fresh sterile sac,

one realizes how much we have

now bonded with previously unnoticed

unloved taken-for-granted organs.

 

Well-wishers offer hope old receptacles

and us, after many happy years

together, reconcile relations, start to work

out existing problems — or if not

in cards dealt, resolve to divorce benignly

before move on to new partners.

© 2020,

GERARD SARNAT is a poet, physician, executive, academic and social activist. Gerry is an MD who’s built and staffed homeless and prison clinics as well as a Stanford professor and healthcare CEO. Currently Gerry is devoting energy/ resources to work with internationally known and recognized leaders addressing global warming.

Sarnat won the Poetry in the Arts First Place Award plus the Dorfman Prize and was nominated for Pushcarts plus Best of the Net Awards. Gerry is published in academic-related journals including University of Chicago, Stanford, Oberlin, Brown, Columbia, Virginia Commonwealth, Arkansas, Harvard, Johns Hopkins, Wesleyan, Slippery Rock, Appalachian State, Grinnell, American Jewish University, Sichuan University, University of Edinburgh and University of Canberra. Gerry’s writing has also appeared widely including recently in such U.S. outlets as GargoyleMain Street Rag, New Delta ReviewMiPOesias, poetica, American Journal Of Poetry, Poetry Quarterly, Poetry Circle, Every Day Poems, Clementine, Tiferet, Foliate Oak, Failed Haiku, New Verse News, Blue Mountain ReviewDanse Macabre, Canary EcoFiction Southeast, Military Experience and the Arts, Poets And War, Cliterature,  Qommunicate, Texas Review, Brooklyn ReviewSan Francisco MagazineThe Los Angeles Review and The New York Times. Pieces have also been accepted by Chinese, Bangladeshi, Hong Kongese, Singaporian, Canadian, English, Irish, Scotch, Australian, New Zealander, Australasian Writers Association, Zimbabwean, French, German, Indian, Israeli, Romanian, Swedish, Moscovian and Fijian among other international publications. Mount Analogue selected KADDISH FOR THE COUNTRY for pamphlet distribution nationwide on Inauguration Day 2017. Amber Of Memory was chosen for the 50th Harvard reunion Dylan symposium. He’s also authored the collections Homeless Chronicles (2010), Disputes (2012), 17s (2014), and Melting the Ice King (2016). Gerry’s been married since 1969 with three kids, five grandsons with a sixth on the way and looking forward to future granddaughters.

Posted in Disability, disability/illness

They called it a Punishment for the Unknown Sins, Some called it ‘Madness’. Today it is called ‘Developmental Disability’ and my life was destined to be a part of it’…

Courtesy of Sandy Millar, Unsplash

He came into this world with an innocent spirit  but with a physical condition, recognized as ‘Development Disability’. At that time  it was commonly called ‘Mental Retardation’, which meant anyone suffering from it  would be having difficulties in certain areas of life, especially in “language, mobility, learning, self-help, and independent living”.

A helpless human being born in this world with an innocent soul, oblivious to life’s reality, unaware of its purpose, totally unconscious of self but for the fulfillment of the  basic need for food and strangely, of extreme sensitivity to music. The tunes that caught his fancy would excite him to the point of screaming that gradually melted into crying and, after long hours, would end by fatigue and sleep.

Everyone at home loved music. Father had quite a collection of 75 rpm records and a stylish Grundig record player which would be attached to the radio. Almost every evening there would be a half-hour music session before dinner was served.

My earliest memories are of joyful moments when he was born. Good looking, with dark eyes, long eyelashes, adorable face specially when it broke into a smile, but something was very odd about him. I could not understand just what at that time. Two years old but hardly able to sit: “when will he play with us? Why doesn’t he speak ?” The only answers were “with time dear” and “in due time, he will.”  We would run off and get busy with our own games and books, accepting the quietly given explanation.

When he was five, he began to sit, but still no speech, nor play, nor self awareness. He would sit on the tricycle but could not pedal or ride. With time he learned to stand and one day took a few steps. Soon with the support of the wall he began to walk. Still no speech. Fits of laughter began to occur and would end up in screams. Lying on the floor nothing would stop the screaming untill time brought an end to them.

He never knew he had a name. He was not conscious of t parents, siblings, or anyone else. He had no idea of day or night. When he started walking he was not aware of the way to go. Once unnoticed he walked out of the gate and onto the road, he was almost run over by a passing vehicle. He was hit and the fall broke two of his ribs. It was a painful time for him. From then on he had to be strictly monitored and often in a bolted room.

With passing years the truth of his never getting well and normal was accepted. He would never be able to converse or take care of himself. He needed constant vigilant care for falls or injuries, for safety against electric wires and shocks, for all sorts of dangers. There was no end to care as he was alive in a world of his own. Parents did all they could. No medicine would work.

Hunger is a strong instinct. He would reach out and hold the arm tightly of anyone close to him at that moment and would push that person towards the door of the room.I t was a clear indication that he was asking for food, but he had to be fed. He could not hold a spoon or a cup, nor a biscuit nor a piece of bread. Sometimes the morsel would get stuck in the throat because it was not properly chewed. Panic would result. Fortunately the first aid of patting on the back would work.

He was not aware of the dangers of injury. Once, in a fit of laughter he clutched the electric extension wire on the floor and let out a loud scream, by the time the connection was cut his hand was burned, the flesh cut and bleeding. The wound healed but the hand could not be normal again. The need for constant vigilance kept the whole family alert. The risk of leaving him alone even for a few seconds was profound and life threatening. One aspect in his personality was that he was a docile human being. Nonviolent.

A newly established state had very little  health care or disability support centers for special-needs children or adults. Tariq ,as he was named would live in his own home, which for the family became a guarded place. Fear concern and worry prevailed, only prayer would bring some solace and strength to the heart. One can never fully understand nor find any answers. The truth is with the One Power Almighty.

Disability of all sorts needs constant care comfort patience respect and love. May Allah the Most Gracious and Most Merciful save and protect his people on this beautiful Earth and May all be blessed with the best of health and happiness.

© 2020, Anjum Wasim Dar

Posted in Illness/life-threatening illness, Poems/Poetry

Antibiotic Blues

Courtesy of Anton Darius, Unsplash

I’m bulbling, bumbling like a dumb blond(e) from the Golden Age of Hollywood
without the figure
or the yellow locks,
a himbo who isn’t very beau.
How can a petite podwery, poerdy, poderwy-
POWDERY damn it
wite, white pill-or is it the pinkish-bluish capsule with the cryptic digits-
besiege a brain and morph it
into mash, or is it mush, to match
the collywobbles in the gut during
eight days of frustrating pharma fog thicker
than a full-frat, full-fat Frappuccino?
Science squashes my IQ as I misplace my cell phone, followed by the TV remote, keys and
bank card and my, um…I forget.
As if hijacked by the shakiness of a heat haze, I stumble to the ice machine but
come back with nothing.
Dates and deadlines become meaningingless in a malfunctioning memory bank, and
I fix and refix phrases like “extra much” that sounded Shakespearean when I typed them.
Mercurial emotions mock me like the menacing Space Invaders of my childhood as
innocuously constructive criticism rips up any remnants of calm.
Someone’s profiting from my prescriptions while I’m vantiqued, vanquished by the salvos of adverse effects.

© 2020, Adrian Stonaker

Originally publish in U-Rights Magazine, December 2019.

Crisscrossing North America as a language professional, Pushcart Prize and Best of the Net nominee Adrian Slonaker is fond of opals, owls and fire noodles. Adrian’s work has been published in WINK: Writers in the Know, Ariel Chart, The Pangolin Review and others.

Posted in disability/illness, Poems/Poetry

Two poems by Alana Saltz

Field Trip

For you, Ms. Frizzle, I would fold
my fingers around the curves of my stomach, dig
my nails into the flesh, rip
it open so you can go right in.

Take your big-eyed bus full of curious children
and explore my mysterious body.

Watch organs lighting up a little too bright.
Red blood cells drifting lonely
like they’ve lost their best friends.
Scattered inflammations and infections hiding
in muscle and tissue.

Explain to the children that these are things
that make me hurt
but not enough for anyone to see.

And when people don’t see something,
they don’t do anything.

Teach them that lesson.
It will always apply.

This poem first appeared in Philosophical Idiot and in Alana’s chapbook, The Uncertainty of Light

Halt

I’m enthralled as I watch an actor scribble symptoms
in notebooks and cry when the pain is too strong
and see doctors who seem to know a little too much
about what’s happening, but it’s okay.

I’ll keep watching.
I can’t be that picky.

I ignore all the cues that this will end
the same way as all the other TV
reflections of me, the fun house mirrors
that only show sickness as a distorted, shortened
one-way road.

There was no other ending.
He’s only got one place to go.

His actor family
weeps over his departure
at just the right time
in the series.

His death is art.
My life goes unseen.

This poem first appeared in AlienPub and in Alana’s chapbook, The Uncertainty of Light

ALANA SALTZ (alanasaltz.com) is the editor-in-chief of Blanket Sea, an arts and literary magazine showcasing work by chronically ill, mentally ill, and disabled creators. Her poems have appeared in Occulum, Five:2:One, YesPoetry, Moonchild Magazine, LadyLibertyLit, and more. She’s the author of the poetry chapbook, The Uncertainty of Light. You can visit her website at alanasaltz.com and follow her on Twitter, Facebook, and Instagram @alanasaltz.

Posted in Disability, disability/illness, Environment/Deep Ecology/Climate Change, environmental injustice

Cruel Legacy, Environmental Injustice and the Growing Incidence of Interstitial Lung Disease

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Thanks to the support of my world-class son and a stellar medical team, I’ve lived for about two decades past my original medically predicted expiration date. Every year or so I feel compelled to get on my soap box –  though the topic is off-theme for my poetry site, The Poet by Day – about lung disease, its increasing prevalence, and its debilitating effects. This post was originally written in 2016 for The Poet by Day. At that time, I needed oxygen for activity only and carried a small tank or two in a backpack as above.  As expected, over time the disease progressed and years of insufficient oxygen resulted in other complications: pulmonary hypertension and right-sided heart-failure. These are further complicated by a rare blood cancer (not curable but managed). These complications result in my being home-bound and often bed-bound for days.

I am now on high-flow oxygen (15 liters) 24/7 and am attached to two linked stationary oxygen concentrators at home and have large portable tanks for doctor visits and to get around the senior housing facility that is my home. These are moved around with specially-designed carts.  My son must come with me to doctor appointments because it takes four tanks per trip, which is too much for me to handle on my own.



At the time in our history when we started to see nature as something apart from us, when we gave up our shamanic instincts and in our hubris separated them from our growing science, when we devolved from stewardship and one-with to ownership and power-over, we set ourselves up for a world of multifaceted pain and disruption. One result in modern times is environmentally induced disease caused by xenobiotic substances that result in cancers, autoimmune disorders, and interstitial lung diseases (ILDs).

My concern here – as a powerful and noteworthy example of the impact of industrial pollutants and of wars and other violence to the earth and its inhabitants – is interstitial lung disease. I have hypersensitivity pneumonitis, an ILD that can be caused by smoking. I am a lifelong non-smoker. Everyone – EVERYONE – is at risk of ILD, smokers or not, and so are other animals. We know that in the United States and England alone, the numbers suffering from ILD are growing. No matter where  in the world we live and what we do for work, we all need to recognize and acknowledge this as part of the complex package of environmental injustices.

Our lungs are the only organs that are exposed and immediately vulnerable to industrial pollutants and inhaled chemicals, dust and other particulate matter in the air. One study tells us, “Lung cancer is the number one cause of cancer-related deaths in humans worldwide. Environmental factors play an important role in the epidemiology of these cancers.”

Consider the two hundred ILDs: These are diseases that affect the tissue and space around the air sacs (alveoli) of the lungs resulting in scaring (fibrosis). We – and other animals – can’t breath through scar tissue, which is not permeable. Hence the exchange of carbon dioxide and oxygen is inhibited. The result is a slow, horrifying and painful death by suffocation. This is mitigated for people like me who have access to healthcare, supplemental oxygen and medications like prednisone and mycophenolate mofetil and, when the time comes, palliative care and ultimately hospice. People living in poverty, in war-torn areas or working at risky occupations in third-world countries, get no such relief and no palliative care is available to them in the final stages. This is unimaginably cruel.

While the most common interstitial lung diseases are considered idiopathic, they can result from exposure to certain chemicals– including medications – and from secondhand smoke and occupational exposure to agents such as asbestos, silica, and coal dust. They may also evolve from an autoimmune reaction (hypersensitivity pneumonitis) to agents in the environment, some of which might be naturally occurring and benign for many people.

Forbes Magazine cites lung disease as one of the continuing legacies of 9/11, the result of “toxic collections of airplane fuel, asbestos, fiberglass, metal, plastic, garbage, waste materials, fecal material, human remains and who knows what else.” In reading this description, one can’t help but think also of the people of Syria and other regions of war and conflict. It is not uncommon for soldiers returning from war to report newly developed respiratory disorders.

Industry, war and conflict, greed and denial, all combine to put the very ground we live on at risk, the air we breath, and the precious functioning of our lungs … We rightly worry about and advocate for issues of deforestation, pollution, hunger, dislocation, destruction of property and other issues of environmental injustice. Not the least of our motivations, concerns and advocacy must be for the sake of our lungs. It’s a fight for the very breath that enlivens us.

© 2016, words and photograph, Jamie Dedes  

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Posted in disability/illness, Poems/Poetry

Four poems by Antonia Alexandra Klimenko

Song of the Mad

It wouldn’t be so bad
if I lost it in one place
at least I’d know where to find it!
But Noooo…
I have to lose it here!
I have to lose it there!
And just when I find it there
I‘ve lost it again here!!

People wonder why
I never answer my own door
I wonder if they can hear me
breathing from under my covers?

Sometimes I hear myself
calling from another room
Or it could be that other guy
who blames everything on me
Of course it’s never his fault
Nothing ever is!

You see
Nothing is enough for him!
First he impersonates me and steals my best lines
Now he covers his ears with mine
and complains that I don’t sing
with the right inflection!!

As if
he’s the only one
who has to listen to me at night !

Song of the Deaf

What can I say
that you haven’t already heard
before me?
I feel left out

Everyone else has two sides
but when I turn around to face the other way
I still point in the same direction!
Sometimes people talk behind my back
right in front of me!

Of course I must expect that
I try to anticipate everything
otherwise I fall behind
and I have nothing to fall back on!
That is why
my world is suspended in animation–
I use my hands to balance silence
the way stars hold up the sky

A cloud can fall back on the sky
but I must climb deeper
into God’s Ear!
Only…where does the sky begin?
I’d give anything you know
just to hear the color blue

Song of the Blind

It bothers me that my eyes are broken
and God will not fix them

Each morning I watch and listen for Him
and wonder through which doorway of my senses
He will choose to enter next

Each day He and I together
make and remake the bed–
make and remake the world

Mostly it is the same
And that is both my comfort and my fear

I have heard that once someone is truly loved
she is never the same
You cannot imagine how I long for change!
You cannot imagine how I long for certainty!
I can only imagine

I never quite know which
I will stumble into next:
Death that l o n g night
or
Life that l o n g day!

Dear Lord
I am without sight
I am not without vision
Please find me

Song of the Homeless

How long must I go on
pushing my life before me?
My feet are bare and swollen—
they do not know me anymore
And I haven’t yet enough hands
to keep me warm
nor make a pillow for my head

Maybe I’ll grow new fingers tomorrow
so they too can stick out
like a sore thumb

I suppose you think
I can find a better place to hide
than in the poverty of my skin

Do you think I like
carrying my heart around with me
in a basket?

You do not care
that I have forgotten the words
to the songs I am singing
And I am running out of songs

How could you know first-hand
that it is not my death I fear…
only that I should learn of it
second-hand

© 2020, Antonia Alexandra Klimenko

A former San Francisco Poetry Slam Champion, Antonia Alexandra Klimenko is widely published. Her work has appeared in (among others) XXI Century World Literature (in which she represents France) and Maintenant : Journal of Contemporary Dada Writing and Art archived at the Smithsonian Institution in Washington, D.C. and New York’s Museum of Modern Art. She is the recipient of two grants: one from Poets in Need, of which Michael (100 Thousand Poets for Change) Rothenberg is a co-founder; the second—the 2018 Generosity Award bestowed on her by Kathleen Spivack and Josheph Murray for her outstanding service to international writers through SpokenWord Paris where she is Writer/ Poet in Residence

Posted in disability/illness, Poems/Poetry

Feeling Good Was Good Enough For Me

When being sick was all you knew
Sweet Jesus, the doc last week asked
“When was the last time you felt good,”
Me and Bobby McGee and I saw black
Roses. Could not thread my way to good.
Life a Harlem-globetrotter procession of sham
Dunks and wheezes. Born RH negative all my
Blood exchanged. Lord have mercy then
Coughing times in bed over and over again.
I hadda find good feeling cuz i was an other early
Outcast over and over. Put the music on
And I would play the piano
Rocking to peace my outcast soul.

Sickness made me hold on to my
Strange and play it on an Aeolian harp
To woo the good places and make me me.
Thank you Kris Kristofferson,
Good enough for a life to live,
To share with you the secrets
Of my soul on the edges
Of strong all along. Be a pearl
On my own making the
Good happen. Jiving Janis.
Feeling good was good enough for me.

© 2020, Linda Chown

LINDA E. CHOWN grew up in Berkeley, Ca. in the days of action. Civil Rights arrests at Sheraton Palace and Auto Row.  BA UC Berkeley Intellectual History; MA Creative Writing SFSU; PHd Comparative Literature University of Washington. Four books of poetry. Many poems published on line at Numero Cinq, Empty Mirror, The Bezine, Dura, Poet Head and others. Many articles on Oliver Sachs, Doris Lessing, Virginia Woolf, and many others. Twenty years in Spain with friends who lived through the worst of Franco. I was in Spain (Granada, Conil and Cádiz) during Franco’s rule, there the day of his death when people took to the streets in celebration. Interviewed nine major Spanish Women Novelists, including Ana María Matute and Carmen Laforet and Carmen Martín Gaite. Linda’s Amazon Page is HERE.

Posted in General Interest, Illness/life-threatening illness, Writing

ELDER POWER: Growing Strong in Broken Places

Courtesy of Philippe Leone, Unsplash

“Authors, like coins, grow dear as they grow old; It is the rust we value, not the gold.” – Alexander Pope


I come to this place of Elder Power through a cascade of chronic catastrophic illnesses and disabilities, which – like life – are ultimately fatal.  Some have encouraged me to write from a clinical perspective. It would seem, however, that the clinical lessons have less significance than the life lessons. It is the life lessons that give us the strength to keep going, that are the true value to be shared, and that make us elders. To me “elder” implies more than “senior” or “senior citizen,” which I see as demographic terms for people who have reached retirement age. A senior is someone who has merely put in time, while elder is about attitude and state of mind. Elder implies one who is accomplished, who has learned a few things along the way.

As a poet, writer, and content editor, it is the life lessons, not the clinical ones, which inspire and inform my work. I have learned, for example, that all humans are in process and therefore imperfect; and that, no matter what our differences are, the most important thing is to remain open to communication and to accept and release our own follies and those of others. I have learned that neither illness nor threat of death preclude joy. I have learned that people who are joyful rarely do harm to themselves or others. I have learned that fear of death has to be directly addressed and then firmly put aside in favor of the business of living. As the saying goes: “It’s not over until it’s over.” Until then, we have responsibilities to others and ourselves. The only real difference between someone who has a life- threatening illness and someone who doesn’t is that the former is no longer in denial.

“If people bring so much courage to this world, “ wrote Hemingway in A Farewell to Arms, “the world has to kill them to break them. The world beaks everyone, and afterward, many are strong at the broken places. But those that will not break, it kills. It kills the very good and the very brave and the very gentle impartially. If you are none of these it will kill you too but there will be no special hurry.”

I am not good, or brave, or particularly gentle. I do not – and never have – suffered fools kindly. Sometimes I let it all get me down. I descend into fear. I am impatient with process, with taking meds and going for seemingly endless tests and doctors’ appointments. Maybe that’s why I’ve outlived my original medically-predicted expiration date by over eighteen years. My mother used to say, “Only the good die young.” My best quality may be that under my protective shell of intractability, I actually am willing to be broken and reformed. I suppose only time will tell if I have grown “strong at the broken places.”

So, here I stand, twenty-odd years into it, hugging my 70s at the dawn of a bright new day in a body that is now dramatically disabled and quite a bit older. It’s still a good morning and a good body. I recognize I once dealt with a worse handicap than my current disabilities. That handicap is commonly referred to as “youth.” I survived. Maturity on the other hand is a true boon, a gift to savor and enjoy with layers of luxurious nuance I had not anticipated. I do not long for my youth. I love my graying hair. I love my wrinkles and the loose skin on my neck. I love the mild deformity of my feet. These things remind me that I am still here after all. It’s unlikely that I’ll dye my hair, though I have. I will not get chemical injections or cosmetic surgery. I will not use rejuvenating grooming products that have been tested on defenseless animals. I am inspired by civil-rights-era African-Americans who sported Afros, said essentially “this is who we are and what we look like,” and chanted “black is beautiful.” I am graying. I am wrinkled. It’s all lovely and lyrical and makes me smile. It’s about ripeness, not rottenness. It’s honesty: what you see is what you get. Aging is beautiful. With maturity, one finds character refined and perspective broadened, energy expands and compassion flowers. The experience of joy comes more easily.

As survivors, we owe it to those who have gone on to live in gratitude for this gift of a long life. How ungrateful and what an insult it is to them for us to bemoan our maturity and yearn for our youth as we so often do. What an incredible waste of time and energy such yearning is. Many don’t survive childhood in their impoverished and war-torn areas. Some others don’t survive childhood due to congenital or other diseases. My sister died by her own hand when she was twenty-seven. I have a wonderful, talented, smart friend in her mid-thirties who will pass within three months from this writing. Like you, I have relatives and friends who didn’t make it to fifty, much less sixty or seventy. All things considered, aging is a gift not a curse.

“People worldwide are living longer. Today, for the first time in history, most people can expect to live into their sixties and beyond. By 2050, the world’s population aged 60 years and older is expected to total 2 billion, up from 900 million in 2015. Today, 125 million people are aged 80 years or older. By 2050, there will be almost this many (120 million) living in China alone, and 434 million people in this age group worldwide. By 2050, 80% of all older people will live in low- and middle-income countries.” World Health Organization MORE

Some of our power comes from our sheer numbers. According to the World Health Organization, 900 million of us were aged sixty or more in 2015 and as of 2018 125 million of us were aged over eighty.  We represent a huge political constituency, a lucrative market, and an enormous fount of energy, experience, and expertise. If that isn’t power in this modern world, what is? What a force for peace we could be.

Some of our power comes from consciousness. We are awake now. We have learned how to live in the moment and how to live joyfully, hugely. That alone is a lesson to share. Some of our power comes from more time and focus. Many of us are retired or semi- retired or on disability, or soon will be. Implicit in that is the time to keep abreast of issues in our communities, countries, and our world. We can take the time and make the effort to get accurate information, to analyze carefully, and to share appropriately; that is, in a well considered, non-inflammatory, non-sensational manner. We can act with grit and grace.

Let the elders among us be the Global Movement of Strength in Broken Places. Let those of us who have this gift of long life seize on it and ply our elder power individually and in concert. Let’s live with joy, do good, and have fun. Most of all let us be generous with our love. Soon enough, when the time is ripe, our bodies will become earth once more. Our spirits will travel on but the river of mortal life will continue to flow. Our children will see us reflected in the eyes of their children. Our grandchildren will strain to hear our voices in rustling leaves and breezes that whisper to them in the night. They will seek us out in moonlight and the warmth of the sun, in the roar of the oceans and the gentle meandering of a lazy brook. They will find us in the hearts of the lives we’ve touched with concern and compassion.

© 2020, Jamie Dedes

Originally published in 2009 in the now defunct California Woman and updated for The BeZine blog series on illness and disability.

Posted in disability/illness, General Interest

Our February Blog Series on Illness and Disability begins tomorrow; Why “disabled” not “differently abled”

Courtesy of Tiago Moisés under CC0 Public Domain license via PublicDomainPictures.net

“My disability exists not because I use a wheelchair, but because the broader environment isn’t accessible.” Stella Young, was an Australian comedian, journalist and disability rights activist. She was born with osteogenesis imperfecta and used a wheelchair for most of her life. When she was fourteen she audited the accessibility of the main street businesses of her hometown.



Throughout the month of February 2020 The BeZine blog is featuring a range of material on illness and disability in concert with Kella Hanna-Wayne’s YOPP!, a social justice blog dedicated to civil rights education, elevating voices of marginalized people and reducing oppression. Our intention in doing this is to give voice to those with illness and disabilities, to raise awareness of the issues and outcomes, and to offer workable alternatives for those who have to manage in environments that are not conducive to inclusion.

We’ve already had some question with regard to terminology: disabled v. differently abled.  We respect each contributor’s chosen terminology, which will be reflected in their posts.

Kella and I are disabled and we both prefer that term over differently-abled. Here are my reasons:

  1. There are things I – like many others – am absolutely unable to do. Period. End of story.
  2. “Differently abled” is inherently meaningless in this context. All human beings are differently abled. Some are better at music, for example, and others are better at accounting.
  3. Almost everyone has some degree of disability, especially as aging progresses.  If you wear glasses, you are disabled and, depending on your occupation or interests, you might be unable to function without glasses.
  4. A reference to anyone as a “differently-abled” individual, is a cruel euphemism.  In my own case, for example, it diminishes the reality of my 24/7 life, which involves being on high-flow oxygen, being unable to lift anything heavy, being restricted to certain living conditions, often being restricted to bed, dealing with chronic bleeding due to a rare blood cancer, and living with extreme fatigue.
  5. “Differently abled” implies a norm that does not exist. There is no one way to feel, to communicate, to educate oneself, or to ponder and create art. The implication is that anything that deviates from the fantasy norm is less than ideal, possibly even somehow wrong.
  6. “Disabled” is not a disparagement. It’s truth. It’s accurate. Implicit is an acknowledgement that there are productivity and quality-of-life challenges that have everything to do with social, political, and cultural assumptions and structures and nothing to do with any one person’s atypical body or mind.
  7. Finally, “differently-abled” is a stigmata that ignores the kinds of accommodations (including some  life-changing technologies) that could be made available to help those many with atypical bodies and minds to lead fuller, richer lives and to contribute their energy and talent to help others and their communities.

This is the short story, the down and dirty of it.  Input is welcome from readers and we hope that you will enjoy and benefit from contributors’ posts throughout the month. We are still open for submissions to the February blog-post series on illness and disability and for submissions to the March 15 issue of the Zine, themed “Waging Peace.”  Submissions should be emailed to bardogroup@gmail.com.

In the spirit of love (respect) and community
and on behalf of The Bardo Group Beguines,
Jamie Dedes
The BeZine, Managing Editor

Posted in poem, poetry

Sick Leave

when everything good leaves my body

my loves, my likes, my have done/s, my will do/s

when my arms are limp, my mind full of a buzzing and humming

 

when my friends are whisked away into the whirlwind of their lives

and I am the only inactive thing

I am left with your voice chipping away at my mind

 

it’s as if I had been wearing all my accomplishments like a robe

holding them close to my body 

covering the inadequacy underneath

 

when my body grinds to a halt 

and I am stripped of every ounce of my value

underneath it all, you are still here

red and raw on my naked skin

 

when the pain of my throbbing joints flood me 

my whole self circling around and around

I try to imagine that the grey aches and sharp flashes

are something beautiful

 

tonight I ask myself

what does my pain look like?

I shut my eyes and see the night sky filled with stars

 

I am the black expanse of unending nothingness

my pain appears as a million balls of light 

 

the shape of me is only visible 

by following the path of my pain

© 2020, Kella Hanna-Wayne

KELLA HANNA-WAYNE (Yopp), one of our newest Zine team members and a partner in our upcoming February series on illness and disability, is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in Disability, Essay, Michael Watson

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.

Posted in Disability, Essay, General Interest, memoir, Mental Health, Michael Watson

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.

Posted in Jamie Dedes, Perspectives on Cancer, Uncategorized

PERSPECTIVES ON CANCER #33: Writing Your Self, Transforming Personal Material

WRITING YOUR SELF

Book Review

by

Jamie Dedes

We feel this book review puts a fine close on our series, Perspectives in Cancer. Writing as a healing art, whether as a purely personal exercise or for publication, is powerful. One of the authors of Writing Your Self, Myra Schneider, learned that with her much appreciated work,Writing My Way Though Cancer. That effort informs much of Writing Your Self.

This review was originally published at Musing by Moonlight.

Four of Myra’s poems were published earlier in this series.

We wrote the book because we believe that personal writing is very potent both for the writer and the reader, because some of the greatest literature is rooted in personal material. Myra Schneider in an interview HERE.

The subtitle of this book about writing is “transforming personal material.”  I think it is implicitly also about personal transformation. It always seems to me that writing and reading about life is a healing activity, a way to live hugely, and a way to empower ourselves and others. If we can do it well enough to engage others, whether our purpose is to leave a record behind for family, to set the record straight, or simply to share and entertain, the experience is rewarding. Writing is a powerful healing path.

Writing Your Self is the most comprehensive book of its type that I’ve yet to read, and I’ve read many. It is organized in two parts:

  • Part I: Here the focus is on life experiences, the exploration of those human experiences that are universal. These include childhood, self-conceptions, relationships, displacement, physical and mental illness and disability, and abuse.
  • Part II: Here the focus is on writing techniques, recognizing material that is unfinished, working on refinements, and developing work projects.

Writing Your Self is rich with examples from known and unknown writers including the authors. By example as well as explanation the authors reinforce what we all intuitively understand to be true: that telling stories preserves identity and clarifies the human condition. It helps us understand what it means to be human. The experience of working through the book was something like a rite of passage.

I very much can see the use of this book by individuals training themselves and by teachers of adult learners who wish to write memoir, poetry, fiction, or creative non-fiction. It would be useful in hospital therapeutic writing programs or in writing programs for active seniors.

Memories, both recent and distant, tell us who we are and so play a crucial role in our experience of life…

You may have memories which you want to plunge into or you may have material like a diary or letters which summon them up. There are other ways though of triggering memories. We offer a series of suggestions. Chapter 13, Accessing memories, secret letters, monologues and dialogues, visualizations.

I think Chapter 13 alone is worth the price of admission. I work a lot off of childhood memories and even the event that happened two minutes ago comes back to me with dreamlike qualities when I sit to write. I have not thought of the things I do naturally as triggers, but indeed they are. It was quite interesting to see these natural aids laid-out and organized on the page to read: objects and place as starting points, physical sensation as triggers, people in memory, and predominant feelings. The section on secret letters – that is, letters that you write someone and never send – was particularly interesting. I’ve only done this twice in my life, but I know some folks who do it all the time. I’m sure it is a common practice and would make a fine jumping-off point for some and a satisfactory exercise – complete in itself – for others. The authors go on to monologues and dialogues, which certainly everyone spins in their heads.  They discuss visualization. Hey, if you can see it, you can write it.

I’m an experienced writer and I enjoyed the book and the exercises and learned a few new things, got a few new ideas. If you are inexperienced or stuck midway in a transition from one form of writing to another, you’ll benefit from the exercises, ideas, and instruction in Writing Your Self: Transforming Personal Experience. This one’s a definite thumbs-up.

Myra Schneider  is a British poet, a poetry and writing tutor, and author of the acclaimed book: Writing My Way Through Cancer. Your can visit her HERE.

John Killick was a teacher for 30 years, in further, adult and prison education, but has written all his life. His work includes both prose works and poetry. You can visit him HERE.

© essay, Jamie Dedes, 2011 all rights reserved

Copyrighted cover art, fair use.

♥ ♥ ♥ ♥

Jamie Dedes ~ Jamie is a former freelance feature writer and columnist whose topic specialties were employment, vocational training, and business. She finds the blessing of medical retirement to be more time to indulge in her poetry, creative nonfiction, and fiction. She has two novels in progress, one in final edits, and is pulling together a poetry collection. Her primary playground is Musing by Moonlight. She is the founder and editor/administrator of Into the Bardo. Jamie’s mother was diagnosed with cancer the first time at thirty-six. She went three rounds with breast cancer, one with thyroid cancer, and died at seventy-six of breast and colon cancer.

Posted in Guest Writer, Perspectives on Cancer, Poems/Poetry

PERSPECTIVES ON CANCER #30: When Cancer Strikes

WHEN CANCER STRIKES

by

Dan Roberson

It was both
a blessing and a curse,

Her chestnut
hair was often tangled or worse,

There were
times Laura hated her hair,

Conditioners,
detanglers, moisturizers,

Sometimes made
her wish it wasn’t there,

 ·

It had been
that way as far back as memory could get,

Uncontrollable
when dry, hard to manage when wet,

Laura’s
curly hair was admired often, she’d confess,

But it was
often a distraction as a frizzy mess,

There weren’t
many options on how to fix her hair,

She worried when
the wind made it fly here and there,

Often Laura
looked out of control and people would rudely stare,

 ·

Looking
calm, peaceful, and beautiful was her goal,

Forgotten were
the comments about her beauty as a whole,

Intelligence
and her abilities made her special in all she did,

But under
hats, tied up in tight braids, her curly hair she hid,

 ·

Laura was a
businesswoman, ambitious in every way,

Determined to
be a success before she turned old and gray,

Laura was
also wife and mother with two children on her mind,

Time for
them or even for herself, was very hard to find,

 ·

Her husband
sent her flowers every month to let her know,

That he would be waiting for her if she decided to take life slow,

Her life was filled from dawn till night, with one job to the next,

Rarely did
she spend quality time with Joe, and both were too tired for sex,

Vacations
were quick and far away, with pictures to prove she was there,

But wherever
she went and whatever she did, she covered up her hair,

 ·

Questions
from a young M.D. on her routine annual exam,

Made her mad
when he said, “We need further tests for you, Ma’am,”

She went
through the tests mainly to prove him wrong,

Much to her
chagrin blood was drawn, it didn’t take them long,

Laura balked
at first when new appointments were made,

But soon she
was on her way and memories of the visit began to fade,

 ·

Later that week several phone calls at work interrupted
her day,

“We want you
to come in, not tomorrow, perhaps yesterday,”

“What’s so important?”
she wondered as she brushed tangles from her hair,

“I’ve always
been so healthy, so why should I care?”

That night
Laura brushed her hair ninety-nine times or more,

With each
tug she commented, “Curly hair is such a chore,”

 ·

But Laura
was restless, the upcoming visit was eating at her,

And at her
next appointment she decided she would concur,

“You have
cancer,” he said quietly, “we should treat it aggressively,”

“I don’t
have time for cancer!” she shouted, “or even time for me,”

“We need to
treat it with chemotherapy,” he stated, “as soon as we can,”

“If we want
to win this war, we have to make a plan,”

“Doctor, I’m
too busy for this, I’ll do chemo in the spring,”

“Then they’ll
bury you deep while you sleep, the chemo won’t mean a thing,”

 ·

The nurse
read a list of changes that Laura might expect,

Foods to
eat, nausea, loss of hair, there was little time to reflect,

She could
deal with changes in her diet, so why did she care,

Yet on her
way home one thought returned, she would lose her hair,

 ·

What would
she do about work, would everyone lose respect?

And what
about her children and her Joe, what would he expect?

“This is not
fair,” she thought, “I’ve fought hard to get where I am,

Now I have
cancer and that puts me in a jam,”

She’d talk
to the doctors and see how this could be fixed,

Laura knew
how business worked, maybe this could be deep sixed,

She was
afraid to hug her husband, likewise with the kids,

With this
draining more from her, their marriage would be on the skids,

Joe listened
to her intently and suggested a group for her to attend,

“I don’t
need a support group,” she countered, “I just want to mend,”

He left a
number of the group in case she wanted to call,

For two days
Laura wanted nothing to do with the group at all,

 ·

But the
third evening as she brushed and detangled her hair,

Laura
wondered what others did when strangers began to stare,

She called a
cell phone number knowing she had to make a choice,

She agreed
to go to a meeting when she heard a cheerful voice,

“Come on and
join us, we’ll have a special guest tonight,

You’ll find
we have lots of fun because no one gets uptight,”

Nervously she
brushed her hair as she waited for her ride,

In the car
it was explained she’d have to wait outside,

 ·

Waiting outside
a home made her feel this was not the place to be,

But she only
had time to see what they wanted her to see,

Conspicuously
placed was a sign stating the group’s name,

“Birds of a
Feather” and in smaller print, “We’re all the same,”

 ·

Laura was
led in at the appointed time but saw one empty chair,

“It’s saved
for you,” a woman called out, “and your beautiful hair,”

How could
she explain that soon her head would soon be bare,

She was
afraid they might laugh and show they didn’t care,

Laura’s fear
was growing as she glanced about the room,

She was the
only one with cancer and ready to meet her doom,

 ·

Businesswomen,
single women, mothers, daughters, wives,

These women
were all beautiful and had normal lives,

“We have a newcomer tonight, so welcome Laura
with applause,”

The leader
continued, “And in case she’s worried, it’s time for us to pause,

We’ve faced
our fears before, and sometimes hid our shame,

But together
we are strong and our freedom we proclaim,”

 ·

One by one
each removed a wig to reveal her hair was gone,

“We’re all
in this together, no one is all alone,”

Their smiles
were wide and welcoming as the leader took her hand,

“When you
can, let Laura know that you really understand,”

 ·

When the
meeting was over Laura returned home,

She kissed
her children and showed them her comb,

She
explained her disease and told them about her hair,

They answered,
“We love you, mommy, we don’t care,”

Her husband,
Laura learned, was compassionate and kind,

He loved her
for her heart, her ambition, and her mind,

They decided
to fight cancer together and strive for the best,

And they’d
spend more time living and loving with zest,

The cancer
went into remission and Laura grew back her hair,

And whether tangled,
frizzy, or wind-blown, now she combs with flair.

© poem and artwork, Dan Roberson, 2011 all rights reserved

♥ ♥ ♥ ♥

Dan Roberson ~ lives in Kansas City, Missouri.  He says, ” I celebrate life. I retired from teaching and now I’m looking for new parades to lead, or to follow. I’m alone, still hoping to be a published author, and trying to stay on my chosen path. I have no anchor to hold me down and I’m ready to rid myself of possessions that impede progress. I want my imagination to soar. I’m open to learning about new worlds, new countries and languages, and different ways to look at things I thought I knew. Every day is a bonus day and I look forward to the challenges it brings. I’m finding out that technology is fast and getting faster and there is much information that I need to learn.”  You’ll find Dan at My Blog.