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.’
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.
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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.
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.
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.
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 Gargoyle, Main Street Rag, New Delta Review, MiPOesias, poetica, American Journal Of Poetry, Poetry Quarterly, Poetry Circle, Every Day Poems, Clementine, Tiferet, Foliate Oak, Failed Haiku, New Verse News, Blue Mountain Review, Danse Macabre, Canary Eco, Fiction Southeast, Military Experience and the Arts, Poets And War, Cliterature, Qommunicate, Texas Review,Brooklyn Review, San Francisco Magazine, The 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.
This one is dedicated to those many who continue to create in the face of sometimes dramatic physical health issues and disabilities. Be as well as you can be. You are valued.
There are two videos included here. If you are reading this post from an email subscription, it’s likely that you’ll have to link through to the site to view the videos. They’re both worth the time and effort.
The Spoon Theory (see video above) is a clear and vivid way of explaining what it is like to live with any chronic, catastrophic and potentially life-threatening illness. I suspect that it also explains what life is like for those who have lived long enough to be described as “elderly.” Understanding The Spoon Theory gifts us with compassion for ourselves and patience with how long it takes to get even the smallest tasks done.
The first step in living successfully with catastrophic illness and advanced aging is to recognize (acknowledge/understand) the ramifications in terms of everyday life and its details. The Spoon Theoryhelps with that.
The second step is acceptance. That’s about letting go of your story. It’s about not being defined by the circumstances of your life. It’s about living with not struggling against. This requires something much more profound than positive thinking, which tends toward the superficial.
Letting go of our stories means letting go of judgement and attachment and a sense of victimization, which are the root causes of many of our very human pathologies. The philosopher Arthur Schopenhauer wrote of this my-story mentality as “striving, disappointment, and boredom” or a life that is devoid of Spirit. Songwriters, who often make their living by stoking the “pain body” or the residue of emotional pain that stays with us [Eckhart Tolle], call this the IFD disease – idealization, frustration (the ideal cannot be achieved) and demoralization.
The third step in the journey is to adapt, a business of the heart. Adapting is not about giving up. It’s about finding our core of joy and gratitude and no one reminds of joy and gratitude better than the beloved Benedictine monk, Brother David Stendl-Rast (video below), who combines the wisdom of traditional Christianity with pragmatism of Buddhism.
No guilt. No judgement. Just joy. With understanding, self-compassion, patience and acceptance, we can still produce as so many of us do … and maybe, instead of beating ourselves up over what didn’t get done each day, we’ll be able to pat ourselves on the back for all we do accomplish. We cannot share The Spoon Theory with everyone. Many people will not understand our challenges. All that matters is that we do and that we support one another.
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.
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.
MBIZO CHIRASHA ((Miombo Publishing Blog Journal) is one of the newest members of The BeZine core team. He is the Poet in Residence at the Fictional Café (International publishing and literary digital space). 2019 Sotambe Festival Live Literature Hub and Poetry Café Curator. 2019 African Fellow for the International Human Rights Art Festival , Essays Contributor to Monk Art and Soul Magazine in United Kingdom .Arts Features Writer at the International Cultural Weekly .Featured Writer Poet Activist at The Poet A Day. Core Team Member and African Contributor to Bezine of Arts and Humanities(https://thebezine.com/) in USA. Flash/Short Fiction Writer for Squawk Back Publication.Contributing Writer( Africa) to IHRAF Publishes–publishes.The Originator of the Zimbabwe We Want Poetry Campaign. Curator of Miombo Publishing Blog Journal. Founder and Chief Editor of WOMAWORDS LITERARY PRESS. Founder and Curator of the Brave Voices Poetry Journal. Co-Editor of Street Voices Poetry triluangal collection( English , African Languages and Germany) initiated by Andreas Weiland in Germany. Poetry Contributor to AtunisPoetry.com in Belgium. African Contributor to DemerPress International Poetry Book Series in Netherlands. African Contributor to the World Poetry Almanac Poetry Series in Mongolia. His latest 2019 collection of experimental poetry A LETTER TO THE PRESIDENT was released by Mwanaka Media and Publishing and is both in print, on Amazon.com and at is featured at African Books Collective. 2003 Young Literary Arts Delegate to the Goteborg International Book Fair Sweden (SIDA AFRICAN PAVILION) .2009 Poet in Residence of the International Conference of African Culture and Development (ICACD) in Ghana. 2009 Fellow to the inaugural UNESCO- Africa Photo- Novel Publishers and Writers Training in Tanzania. 2015 Artist in Residence of the Shunguna Mutitima International Film and Arts Festival in Livingstone, Zambia. A globally certified literary arts influencer, Writer in Residence and Recipient of the EU-Horn of Africa Defend Defenders Protection Fund Grant, Recipient of the Pen Deutschland Exiled Writer Grant. He is an Arts for Peace and Human Rights Catalyst, the Literary Arts Projects Curator, Poet, Writer, publicist is published in more 200 spaces in print and online. Mbizo’s Amazon Page is HERE.
“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.
A dusty, dimly lit room filled with empty space and rough wooden floor boards. Along one wall there is a series of narrow windows, that let in very little light. Photo courtesy of Chris Bair, Unsplash.
Nothing but “I can’t I can’t I can’t” is sounding in my head.
My best friend has her hand on my knee. She’s carefully offering me solutions to try to get me out of this trap. I say no to every single one. I know it looks like I don’t want to find a way out. I do. I can’t find it. I want permission to lose it, permission to stop searching for a way to function like a normal person. I don’t want to be held together. I want to split apart and lose myself in the fragmentation.
It’s like the most vulnerable part of me is exposed to the outside world and I have to protect it from even the smallest hardship because it has no armor, and if I damage it, it will never recover. It’s like every tool I’ve learned my entire life to cope with the workings of my mind, to cope with the unpredictability of other people, to cope with my tendency to give all of myself, is inaccessible. I cannot protect myself from anything.
I hang up the phone. My event has been canceled with just a few hours of notice. I don’t know the words in my language to name the feelings in my head. Anger? Disappointment? Stress? What emotions do those words embody? Are they the ones that I have?
For some reason, I can’t tell anyone that my world is crashing down until I know what words describe my feelings. Somewhere inside me I know there was an explosion of twenty emotions contained by a vacuum but all I felt was the muffled noise that the explosion made when the bomb went off. I want to open the door to this capsule and look at the damage but I can’t find the door either. I want to peel off this band-aid. I can’t find the edge of it, even though I’m scraping my skin, hunting for it.
There are flashes of pain in my heart, and then my vision goes fuzzy as I stare at nothing. I stay like this for a minute and then resurface, the pain returning but a little diluted, and I catch my breath. I don’t remember if I was breathing while I dissociated.
I come up for air and with no warning, I’m lucid again. I feel like myself and yet I thought I was myself before. I want to connect with my boyfriend, I can feel his touch. It penetrates all the way to my core. It’s as if I haven’t seen him all day. Just an hour ago, I was pushing the words, “How was your day?” out of my mouth, as tears built up under my face, filling my cheeks and the contours of my eyes, clouding my vision, making my thoughts slow, waiting to burst out again.
A window into my writer’s brain opens for a brief moment, I manage to type out three paragraphs and then I feel the window slowly closing, my heart succumbing to numbness like a cloud that covers my connection to myself. It’s an impulse to protect myself from something I can’t quite name. I hear a distant cry of grief as my creativity, my productivity, my reason for being valuable, slips away from me once more.
A woman lies on her side on a bed, her arm under her head, staring blankly ahead of her. The view of her is partially obscured by an blurry obstacle in the foreground on either side of her. Photo courtesy of Jordan Bauer, Unsplash.
I’m fine just a little sad and I’m lying on the floor wondering why I’m a little sad but I’m fine and then it hits me like a sack of bricks dropping onto my chest that I’m not scared of abandonment I’m scared of losing access to intimacy, this precious substance, the lack of which causes me to wither and numb myself, and why am I so afraid of losing it? Don’t I know I can find it with someone else? But no, this time, I cannot dance to fill the hole in my heart, this time I cannot easily meet new people to try to date again, this time my disability hangs on my shoulders like a neon sign that says “I’M NOT WORTH YOUR TIME” and I have no way of knowing who can see the sign and who can’t. The bricks stay on my chest even as sobs explode out of me and I gasp at the pain, this new strange backward crying I’ve started doing, as if the act of pushing the pain out of my chest only makes the pain from this wound more vivid, and every breath, I cry to rid myself of the pain and then gasp again as the pain penetrates deeper. The crying stops because I have no answer to the question, “what will I do if I lose intimacy again?”
One month of increased anti-depressants or maybe it’s getting to the other side of the trauma or maybe it’s the most recent conversations with my boyfriend but whatever it is, I can feel the streaks of dopamine cutting through the dull molasses that so recently covered my heart every moment of the day. Rather than every task being a dead end, pointless, sad endeavor, some of them have light at the end. And then because your brain responds not just to the dopamine trigger itself but the lead up to the dopamine, I get that little bit of light earlier and earlier, like catching my breath for just a moment at the end of a devastating work out that has no benefit. I keep expecting to fall into the tank of quicksand again– where I will respond to every thought, every need with “I don’t care,” or “what’s the point”– but instead I step and there’s solid ground. My feelings swirl and collect neatly, still sharp and intense but they present themselves clearly so I can pick them up one at a time and hold them close.
Like the first day back after a wipeout flu, I’m exhilarated by how functional I am, trying to cram as many to-do’s into this stretch of motivation and energy as I can. I start to slow down and find myself scrolling through Facebook an hour after I finished my last task. Determined to teach my depression that my doing-things neurons can fire even when that cloud is consuming me, I barter with myself until I find a reward motivating enough to get me up. I wash dishes and chop some vegetables for the dinner that I will never make. I sit back down, feeling as if the flu has hit me again and it takes a moment before I realize I’m not depressed, I’m spent. 7pm and I am done for the day.
This weight in the center of my chest keeps pulling me inward. I try to interact, to connect, to think of things to talk about. What do healthy people talk about for fun? I try to predict what is expected of a person like me in a situation like this and mimic what would be done, but it’s as if I’ve never done it before. What did I use to do?
The longer I resist the pull to withdraw, the more exhausted I feel. As I give into the pull, tears come to my eyes without words to accompany them. The pain surges up and out but I am no closer to understanding it. I crumple inward, angry at my inability to understand my own mess.
I read my writing from three months ago and stare and stare at the clearly illustrated points and organized structure. How was my mind ever free enough to write this?
I have a doctor’s appointment to follow up on my medication change. I rate my symptoms on a scale of 0-3, trying to accurately represent what I feel and also accurately represent the difference between the last time I filled out this sheet and now. Last time, I counted out my total, decided it was too high, crossed out several of the numbers, and replaced them with lower ones. I struggle to describe to my doctor the paradox of grief and emotional pain so deep that I can barely function, and yet somehow I am not in danger of hurting myself or neglecting basic needs. Each day I am simultaneously devastated and okay. It’s as if I’m sitting at the edge of a pool and I’m choosing to throw myself in, let myself sink to the bottom, struggle and writhe, and then float back up, out of breath and exhausted. My doctor tells me that it’s okay to call my weird childhood a source of trauma. I think she thinks I’m a person who undermines my own trauma. I am. But not like that.
I’m cleaning my room for the first time in I don’t know how long. My desk became a storage unit, items without homes stacking higher and higher. I start at the top and place one thing at a time in the recycling, the trash, or the place it belongs. The stacks get a little smaller and then my hand falls on… A bar of chocolate? From who knows how many weeks ago, my favorite type of chocolate was sitting untouched at the bottom of a pile of junk. I have no memory of buying it or putting it here.
It’s another reminder of how far away I am from healthy me. I know she’ll come back but I have no sense of how long she’ll be gone. It feels strange having concrete evidence that, just a few months ago, I was clear-headed enough to buy myself a treat for later in the week. I was not constantly inundated with feelings that halt my body until they’ve moved through me, wrecking me in the process, that I was not always resisting the pull of numbness, of something brainless to take the edge off this hurt. I don’t know what the path back to health looks like. I just know I’ve done it before.
A deer crouches, staring into the camera, tail tucked, frightened and cautious, surrounded by dark green foliage. Photo courtesy of Carly Rae Hobbins, Unsplash.
I slowly open a tiny door and peek inside. A warm vulnerable feeling fills me, like watching a fawn and holding your breath hoping it will not startle and run away. The feeling is so delicate and precious that I tell no one I have it. I cannot step inside the door for more than a minute at a time, the fear of self-expression is too powerful.
When I interact with other people, I close myself off and pull away so that they won’t startle the fawn either. Even when I want to connect, my door inside closes and so does the rest of me, my body language turning away as if I want to avoid all contact even when part of me wants to show my new discovery so badly.
But I watch as unwittingly, words flow through my fingertips, I have something to say, I think something important and moving and I express it, without the usual wall of doubt surrounding me. If I ask myself to write in a formal document, the terror returns, rising up in my throat as if asking myself to write a paragraph is as bad as asking myself to tell my therapist I no longer want to see her. But I did that, so maybe I can do this too.
Down the hall from
my hospital room
a man’s voice sings
the blessing for Shabbat
wine.
I see out
my door
what’s left
of thin hair
a pink hospital gown
hands holding
the wall
as an old woman
peers round the corner.
When the man
finishes
she stumbles
back to bed.
—Michael Dickel
21 June 2019
My journey to identifying as a disabled person was anything but clear cut. Before the injury that flipped my life upside-down, I thought that my pre-existing health issues were within the range of normality. And once it was discovered my sudden uptick in pain was injury-based, I had no reason to believe that my injury wouldn’t heal in a timely matter. Most of our exposure to the world of disability tends to be what we see in TV and movies, and every fictional character I knew of that ever contracted a serious illness or sustained a severe injury always overcame their obstacles and recovered 100% (or they died). The idea that your body could be physically impacted in such a way that you may never fully recover or the recovery takes place over 5-10 years, never occurred to me. I assumed my issue was temporary.
And when I did eventually begin playing with the word “disabled” to describe myself, I received a lot of resistance from the abled people surrounding me. They would say things like, “Do you really see yourself that way?” or “But you’re so much MORE than that,” as if calling myself disabled was inherently a more self-limiting description than calling myself a brunette. I was discouraged from claiming a label that ultimately became a key aspect of my identity.
The truth is, I had absorbed many of the mainstream beliefs about disability that all of us learn, and I had to find out the hard way that they were untrue. These misconceptions inhibited my ability to accurately describe myself, to be proud of who and what I am, and they actually prevented me from accessing the help I needed.
Expanding Your Understanding of Disability
One of the biggest misconceptions about disability that I was implicitly taught is that when you become Disabled, you are entered into the Official Disabled Club and it will be clear and obvious to everyone around you that you are a Disabled Person. (Spoiler alert: This does not happen.)
Our culture sees disability as something concrete and binary which is weird because bodies are incredibly complicated. Pretty much any function of a human body can manifest with a variation that’s extreme enough to be disabling, either due to the severity of the dysfunction or due to the symptoms’ incompatibility with society’s expectations around how people should move through the world.
Just one presentation of disability can actually represent a huge range of levels and types of ability. For example, there are literally hundreds of reasons you could require a wheelchair: pain, muscle weakness, lack of bone density, fatigue, unstable blood pressure, dizziness, paralysis, amputations, temporary injuries, recovery from surgery, the list goes on. Some people need a wheelchair for those issues 100% of the time, other people need one only when their symptoms are severe and can walk the rest of the time, and yet other people only need them when they’d otherwise be required to stand for more than an hour at a time. “Wheelchair-user,” which is just one disability in society’s eyes, is actually hundreds of different disabilities.
A young person wearing blue jeans and blue and white polkadot sneakers walks casually beside a person sitting in a wheel chair, holding a cane, as if they are enjoying an afternoon together outside in the sun. Photo courtesy of klimkin, Pixabay.
But our binary ideas about how disability presents itself means we struggle to identify disabilities accurately. Ambulatory wheelchair users– people who use wheelchairs but are able to walk some of the time– are regularly accused of faking because instead of recognizing the wide range of conditions that wheelchairs are used to accommodate, many people have the misconception that either you need a wheelchair 100% of the time or you never need it. Abled people expect disability to present in a very specific way and anything that varies from that 2-dimensional description is treated with dismissal.
Overall, our definition of what “counts” as a disability, is very limiting and we’re quick to categorize conditions we don’t understand as not “real” disabilities. Conditions like chronic anxiety or ADHD are rarely thought of in these terms, and even people with visible physical disabilities struggle with being recognized as disabled enough.
Because what we’re really categorizing is not disability at all, but whether it’s okay for someone to ask to be accommodated. “You’re not really disabled” almost always means, “You don’t actually need help with what you’re doing.” If culturally speaking the general consensus is that you should be able to cope with a physical/cognitive issue without help, then we’re discouraged from seeking it and shamed for “pretending” to be disabled in order to receive special treatment.
The result is that many versions of disability are hidden from mainstream awareness, and millions of people that would live easier and happier lives if they were given accommodations or life adjustments are forced to go through unnecessary hardship.
You Don’t Have to Do Things the Hard Way
Prior to disability, I was already in the habit of downplaying my needs, and given this cultural backdrop with which we view disability, I was very slow to embrace the word “disabled” and the implied necessity for assistance that went with it.
At the time, the idea that if at all possible, you should do something without help, was such a normal part of the society around me that I didn’t recognize how illogical it was. While there are certain forms of access like accessible parking spots or restrooms where there is a limit to how many of those resources are available, there are so many forms of assistance that are not limited.
But we force this contrived scarcity mindset to all sorts of things: It took me weeks of suffering through the pain of walking on a recently-injured ankle before I realized there was no reason I shouldn’t ask for a ride or take the bus to work. No amount of saying “It’s only five blocks!” would change how resource costly it was for me to walk or how much pain I was spared by getting a ride.
Joining the disability community opened my eyes to a world of possibilities for adapting your life structure to fit your own needs. Even though I originally resisted joining the community, once I recognized that my set of physical conditions did count as a disability, accepting the identity actually validated that yes, I really did need help, I really did need adjustments to my daily life that were counter to the average American’s lifestyle in order to be the healthiest version of myself. Saying I was “disabled” became a way to make those needs more real to myself.
How Are We Defining Disability?
There is an underlying problem behind all these cultural misconceptions about disability, and it’s rooted in how we define what it means to be disabled.
The primary definition we have in our culture is called the medical model of disability. In the medical model, a disability is defined by a defect, a flaw, an abnormality, a lack of something, that interferes with your ability to function in everyday life. In the medical model, a disabled body has something wrong that sets it apart from the default body, which is a healthy abled body. (Note that “body” in this context also includes cognitive function and mental health.)
According to this model, if I call myself disabled, I am saying that there is something wrong with my body. I’m saying that my body is fundamentally lacking in something that normal bodies have. And it’s extraordinarily easy in our culture that moralizes health to conflate, “something is wrong with my body,” with “something is wrong with me.”
Introducing the Social Model
To combat this stigma, the disabled community created a new model: The social model of disability essentially says that disability is not caused by a problem with your body, but an incompatibility between the way your body works and the way society is structured. If disability is defined by the level of difficulty you have navigating the world around you, it stands to reason that the nature of that world is going to impact the severity of that difficulty.
The social model is all about identifying the external structures that are making something difficult for a given person and changing and adapting them so that the level of difficulty decreases or even disappears. For example, the popularity and ease of access to eye-glasses and contact lenses means that we can effectively remove a vision impairment that 200 years ago would have been debilitating.
(Note: There are varying opinions on whether it’s best to use a combination of the social and medical model, or to define the social model not as eliminating disability but as accommodating disability to the fullest extent that is possible for a given condition or environment.)
A woman riding a red motorized scooter has to duck down uncomfortably low to get under a wooden plank blocking the dirt path unnecessarily. Photo courtesy of makeitsomarketing, Pixabay.
But many disabilities require a more in-depth look at our society’s structure to achieve accommodation: I live in a society where the default expectation is that I need to work for money so that I can pay my basic expenses, and on average, it will require 35-40 hours of work a week to make enough money to pay those expenses (This summary is extremely oversimplified and outright incorrect in many cases, but this is the general belief about what’s normal in our society.) The work I do is also expected to be at a location other than where I live and in most cases, includes doing a handful of the same tasks over and over again.
None of these constructs are inherent to human society, they’re just what’s normal for this time period and the part of the world I live in.
But the nature of my disability means that I can work a maximum of 20 hours per week, my expenses are higher than average thanks to additional healthcare costs, leaving the house is particularly resource-costly, and repetitive tasks fatigue my muscles very quickly. If I were to work a “normal” job and pay my bills like a “normal” person, my pain and likelihood of injury would be so high, I would need significantly more assistance, and my health issues would compound on one another. My disability would get worse.
However, if I’m allowed to work part-time, at my own pace, from home, doing a variety of tasks that use my body in different ways, my health and productivity both improve. My pain decreases, I have more energy, and I’m overall a happier person. I am significantly less disabled when my life structure is compatible with my physical needs.
The social model takes the focus away from trying to fix a disability and instead puts it on improving a disabled person’s quality of life. For me, it dramatically changed my understanding of what a disability is and how I define it: A disability is anything in your mind and/or body that inhibits or prevents you from engaging with basic aspects of society– work, relationships, hobbies, meeting survival-based needs– as a result of a society structured around the habits of the majority.
Using the social model also puts focus on one of the most important aspects of the identity of being a disabled person: the virtue of adaptation.
An Identity of Adaptation and Creativity
If you join the disability community on twitter, you’ll notice the majority of folks there will include “disabled” or the blue “accessible” icon in their bio. But more than once I’ve seen abled people object to this: “You base your identity on your disability? What a depressing outlook on life!”
If you’ve only learned the medical model, letting your disability define you sounds like you’re saying, “There’s something inherently wrong with me,” or “My life is filled with things I can’t do.” From that perspective, disability as an identity is depressing.
But to be a disabled person means to navigate a world that was not built for you. You’re playing the game on hard: extra obstacles, fewer power-ups. You are constantly planning for contingencies, advocating for your basic needs to be met, assessing and adapting your choices in the moment when the available pre-set options are not options you can use.
Being disabled means looking at your environment and being able to pull back the veil of assumptions about what it means to live a “normal life” and challenge them. Being disabled means rejecting the default and saying, What if we did things a different way?
If I visit a fellow disabled friend’s house, I can count on them to anticipate my needs and ask the right questions to make sure that I am happy and comfortable, even though demands on their resources on average will be higher than the demands on an abled person. An abled friend, other the other hand, usually requires a crash-course on how I need to be accommodated and what I can and can’t do before they can effectively be my host (and they likely won’t initiate this crash-course, which means I have to do it pro-actively).
A group of friends hang out and take selfies at a bar while drinking beer. They have a variety of skintones and forms of disability, both visible and invisible. Photo courtesy of Elevate, Unsplash
It was the disability community that taught me to adapt my life to optimize it for my needs, to prioritize my own well being over the social expectation of what a life should look like. My disability impacts my career choice, my relationships, my hobbies, my activism, my relationship with myself, my understanding of the world around me. My disability is an integral part of my identity and that is not a sad thing in any way.
Because being disabled involves an exceptional level of creativity, innovation, adaptation, decisiveness, solution-seeking, thinking one step ahead, and changing the status quo. When I say that disability is part of my identity, I’m saying that I’m part of a group that shares this unique set of skills and this specific outlook on life.
With such an incredible set of qualities, why wouldn’t I want to identify with the community responsible for teaching me that my needs will always be worthy of accommodation?
Kella Hanna-Wayne 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. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and her work 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.
This article was cross-posted on yoppvoice.com on February 8th, 2020.
my grief
in listening to music that I cannot dance to
is just the feeling of my heart leaving my body
as it soars across the dance floor
begging my feet to follow
it is the same pleasurable agony
of missing the one you love,
my brain places each step
and says oh!
wouldn’t it feel good to move this way?
naively seeking a reunion
that will never arrive
but my affair
with listening to Pugliese,
the beast of the tango world
that dancers study for years to master,
is like having my body hurled across the room
against the walls
against the ceiling
it screams why
aren’t
you
dancing
you
will never be enough
you
are
not
worthy
And yet I return to it
to be thrown again
and again and again
a fractured soul
with a battered body
returning to her abusive lover
Illness is a worldly test of faith strength and trust. It comes any time and face
it, we must—from childhood to old age. Some are lucky, some not so fortunate.
Some are born without health, physical and mental; they need care respect and
love. Illness strikes from time to time,sometimes mild sometimes serious. It reminds
us of a power, greatest of all, a power who gives us the cure. Illness taught me
to surrender, accept the changes, and be patient.
And so I faced pain fever and bleeding until the body lay in a red pool on a flat table.
The doctor knew better to let me bleed. I lost a child. Three days and three nights, I just lay.
Life was kind to let me stay, engulfed in cold silence. I could not even pray. I knew that In God’s hands was the way.
Bleeding body and pain again. ‘This is normal’, they all said, and stared. I was a child, my mother cared, now I am a mother.
Would my child care? My child helped, but I myself, too, had to be brave. It all has to be a personal affair in the end.
To nature we all must bend.
Lying cross like on the operation table
I could not move. I was only able to
see the eyes, calm quiet concerned,
the face behind the mask.
I try to remember, but I forget—
my body half lifeless, numb and stiff.
I could not speak. I was only able to
breathe. Frightened, I heard my heart beat and someone’s faint talking, some words audible, some mumbled.
I tried to understand but failed.
Eyes met the eyes as I felt a quick cut,
a part of me slit, incised, painless,
speechless. I remained, while some
talking I heard; my arms now stiff,
I prayed for strength, dropping into
sleepy numbness. I surrendered.
Two unknown human beings—are
they angels from above, hidden behind
gowns and masks? I know not what they
do or how, but they are briskly active.
I shake, I hear a voice, ’15 more minutes’.
I meet the eyes, calm and serene, confident.
I feel secure. ‘It’s done’. I hear talking,
‘twenty minutes’, ‘ suction’, ,stitch’, ‘suction, stitch’.
Then I do not see the eyes anymore, nor
the angel figure. Legs, heavy, start tingling.
Shivering takes over, I tremble with cold.
More talking I hear,
‘blankets’ please; another one,
”I am feeling cold’; an electric heater
throws welcome heat on my face.
I cross my arms as if in embrace.
The shivering stops—I feel empty.
More eyes, I see, more talking I hear—
why is this room so warm?
Hustle bustle around,
my bed pushed, rolled, turned.
I feel nausea—I see personnel in green.
Am I smiling? Yes, for others, for I am brave.
Inside, my heart cries. I wish to keep looking
in those eyes so calm, so serene, so loving,
giving hope of life and saying, ‘all will be Ok’.
Time
Time,
It is a matter of time
All will be Ok.
Two months later:
As I was leaving the doctor’s room after showing her the test and physical examination reports, she looked at me directly in my eye and said, ‘you won’t be able to sit on the floor anymore’.
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.
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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.
Uncle John’s airedale watches the moon
with me as we walk. The man up there
does not excite a dog’s sense of smell.
John doesn’t understand
how I freed myself from the tv. This is more exciting than sex, he says. A man just walked on the moon.
The moonlight outside lacks magic
for him. Meanwhile, every possibility
sparkles on its river of quantum waves.
My Son’s Space
My son wants to find a planet
hotter than ours, but cooling rapidly.
We will trade places with the goldilocks
aliens so each of us finds a just-right home.
This is how he solves problems—missile attacks,
the climate crisis, poverty. He invents solutions,
builds models, gives all the energy and love
he has to liquid possibilities of rescue.
Hearing I have lymphoma doesn’t dissolve his glittering
resolve. He sits, quiet. Then he says, I will find a cure.
Artists painting river stones
at a flea market table yielded
pet rocks as Apollo reached the moon.
Mine had the moon lander.
I carried that promise of technology
with me until I turned from space.
Now, washed by dust and light from
other galaxies, my smooth head reflects
a chemotherapy travelogue. I retune
to technopoly and drifting planets.
A slightly different version appeared in: Black Bough, 20 July 2019, Issue 2, Broadside 9
Bio
Michael Dickel is a contributing editor for The BeZine. He writes on- & off-line & edits his blogZine, Meta/ Phor(e) /Play. His most recent poetry book, Nothing Remembers, came out from Finishing Line Press in September, 2019. He lives, writes, and teaches in Jerusalem.
On May 28, our group for people with life-threatening illnesses celebrated the lives of those who have already passed on. I was unable to attend the memorial service due to bronchitis, but I celebrate them, two of my family, and this wonderful group here today.
Our group is composed of people from several different religious traditions and is hosted by our local Insight Meditation Center. The group was founded and is run by a Buddhist chaplain who has been very kind and is a stalwart friend to each of us.
I no longer attend meetings. By some surely unearned grace, I am now considered “chronic and stable” and I’ve grown to the point that the news of death no longer disturbs me. The major take-away for me from this experience is that the only difference between having a medically predicted expiration date and not knowing when our time will come is that with a diagnosis, we no longer fall into those moments of denial. That’s a huge gift. Huge! The result is that we become present in each moment.
Today, is my loving celebration of: Ann, Deborah, Dick, Ernie, Hilda, Mary, Parvathy, Robert, Mary Kate, Steve, Victor and to family lost in recent years: my former husband, Kirby (the most decent man I’ve ever known), and my cousin, Christopher, with whom I grew-up and who was like a brother …
Each moment and every person is precious and beautiful and the only thing that really matters is how much we have loved and been loved and that – as survivors – we continue to live in the service of our families and those in need. In the end it would seem that’s the best way to honor the family and friends whose memory we treasure .
Eternity flowed deftly through the last eight years
enfolding in her stream eleven with whom we
contemplated Knowledge and Mortality
Looking back, we ponder amazed at love among friends, ……….it blossoms fragrant, as gentle ……….as a dewy rose among thorns and thistles
We thrash and crawl and climb ……….puzzling ……….over the sea and fire that stalks us
Our hearts, cupped in one another’s hands ……….like castanets, beat in unison
Our measured moments grave lines in phantom fears, ……….they float like storm clouds above us
In words of jade, we speak elegies and encomiums
Our smiles mask our sorrows and yearning
Our laughter is love grown wild
We see each other in a thousand shapes and dreams ……….and in nameless names
Our sighs ride the ebb tides of Eternity …..Another moment: …..and even the sun will die …..but our lotus song will echo on …. ……….We have lived! We have loved!
JAMIE DEDES (The Poet by Day)~I am a medically retired (disabled) elder and the mother of married son who is very dear. I started blogging shortly after I retired as a way to maintain my sanity, to stay connected to the arts and the artful despite being mostly homebound. My Facebook pages are:Jamie Dedes (Arts and Humanities) and Simply Living, Living Simply.
With the help and support of talented bloggers and readers, I founded and host The Bardo Group because I feel that blogging offers a means to see one another – no matter our tribe – in our simple humanity, as brothers and sisters and not as “other.”
“Good work, like good talk or any other form of worthwhile human relationship, depends upon being able to assume an extended shared world.” Stefan Collini (b. 1947), English Literary Critic and Professor of English Literature at Cambridge
The same question that had hounded her for years continued to pummel Irene: At the end of my life, what will I have to show for it?
The answer, she decided, wasn’t in this place—a box-like room full of white sheets, a white blanket, a white commode and the sickly smell of urine, feces and vomit.
She dragged her legs to the edge of the bed, grabbed the rubber handles of her walker encrusted with the grime of three weeks in the nursing home, and made her way to the apple red crash cart parked down the hall where she copped a vial of potassium chloride, a 22 gauge needle, a syringe and tourniquet from the drawer that should have been locked.
After signing herself out against medical advice, she took a taxi home—her happy yellow home with the flower boxes on the window sill that had just come into bloom—the place where she had chosen to die.
Purty, her calico cat greeted her at the door, purring and winding herself about the ankles of the old lady who suddenly realized that the medicine stashed inside her purse wasn’t what she really wanted, not when she had something that needed her..
In my nursing experience, people need someone or something to get better for–or at least the process of rehabilitation goes much better when there is a loved one waiting at home. Even, perhaps especially, if that “someone” depends upon them.
A couple of days ago I went with my husband to help an old lady friend prepare her apartment for renovating. After moving some furniture around the house and readying the space for the next step, we wanted to leave. The old lady, however, didn’t want to let us go away until she gifted me with some things of hers, including several flower pots, which, she said, were anyway deprived of care, since she doesn’t actually live in that apartment and only comes there once in a while. I took those flowers with gladness, not necessarily because they were gifts, but because they are pieces of life coming from a person whose life is hurrying towards its end.
The lady in question is about 65 years old and suffers from bone cancer in final stage, and despite that, and despite the even worse situation that her own son suffers from multiple sclerosis, she still finds within herself the power to not only smile, but to actually laugh and enjoy what is left of her life, and even make fun of the horrible sickness eating her alive.
While I was preparing those flower pots to take them home, I had a small conversation with her, and one thing that she said remained with me, like a second gift: “There is so little that we actually have in this world, no matter how much we possess!” In her eyes, when she said that, I thought I noticed a glint of pain, but in the next second it was gone, and she told me that she would give me all the rest of the flowers, if I wanted them, and I happily accepted. A strange tone of joy crossed her voice when talking again, as if she was suddenly relieved for the flowers’ fate, and so we established that next time we go to that apartment we would take the rest of the pots too. Then we left.
There are many gifts that we receive in this life. Many objects, many proofs of our evanescent nature. Most of them get lost along the way, and we forget about them, expecting others in exchange. There are, however, irreplaceable gifts, like, for instance, every single day that we live on this earth. Do not let that waste – because at nightfall, the day will have passed anyway – but it’s up to each of us to not let it go in vain.
The flowers that I took from her are now in my own house, making friends with my older vegetal tenants, and I don’t know which gift was more important – the plants, which she turned into a sudden piece of heritage for me, or the splinter of her own life and wisdom that she decided to share with me. I do know though that, even after she will be gone (no matter when that will happen) she will still be alive for me in each of those flowers.
LILIANA NEGOI (Endless Journey and in Romaniancurcubee 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.
Metastasize;
an awkward word,
vowels lurking with malice
between those rock hard t’s
and stumbling past that sinister s,
into that endless z…
Even educated women know;
the seeds of broken dreams will gather
nearest to the heart
and grow
until the Gardener’s sharpened shears
snip away the wretched, rotted root.
That puckered rose, that brutal scar,
my brave and beautiful friend;
wear it as a medal:
triumphant, survivor, heroine!
– Cindy Taylor
Minnie Julia Riperton (1947-1979), American singer-songwriter: In January 1976 Riperton was diagnosed with breast cancer and underwent a modified radical mastectomy. Though she was given just six months to live, she continued recording and touring, and in 1977 she became spokesperson for the American Cancer Society. Riperton was one of the first celebrities to go public with her breast cancer diagnosis, but did not disclose that she was terminally ill. In 1978, Riperton also received the prestigious Society’s Courage Award presented to her at the White House by then-President Jimmy Carter. She died at age 31 on July 12, 1979.
A VOICE SILENCED TOO SOON
Listen:
♥ ♥ ♥ ♥
CINDY TAYLOR ~ originally contributed this piece to us in 2011 for our Perspectives on Cancerseries. She is multitalented: a freelance writer, a poet, editor and proofreader. She also has an abiding passion for food and an endearing zeal for life, which she shares with us on her award-winning blog, The Only Cin. Cindy lives in Johannesburg, South Africa.
Michael Dickel is a contributing editor for The BeZine. He writes on- & off-line & edits his blogZine, 
The BeZine 