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

fullsizerender

I have lived now for nineteen years past my medically predicted expiration date. Every year or so I feel compelled to get on my soap box – this site, though the topic is off-theme – about lung disease, its increasing prevalence, and its debilitating effects.



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, 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 complicated 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. 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.

Note: The photograph is of my portable oxygen tank. I put it in a backpack and that allows me to walk for about a mile or to be away from home for short periods of time, a little grocery shopping, a library visit, doctor appointments. This need for supplemental oxygen makes it impossible for me to participate in poetry and writing communities other than online.  So, thanks to all of you for being a part of my creative community.  

© 2016, words and illustration, Jamie Dedes, All rights reserved; originally published in The BeZine.

RELATED:


ABOUT THE POET BY DAY

CELEBRATING AMERICAN SHE-POET (9): ANN EMERSON, Far From Eyes Broken Like Windows

San Francisco Bay Area poet, Ann Emerson, was one of the first two people I invited to join in the collaboration we now call The BeZine. It was originally named Into the Bardo, in reference to the Buddhist state of existence between death and rebirth; so named because of life-compromising illnesses.

Ann was a gifted poet, but she didn’t find that out until after she was diagnosed with a rare bone cancer. She discovered her voice in a hospital poetry class. Ultimately she studied with Ellen Bass in Santa Cruz, California. 

img_0961

After diagnosis, Ann survived for an almost consistently tortured six years. Physical pain. Trauma. Fear. Chemo. Poverty. She had signs posted around her house that said, “Live!”

While Ann spent a lot of time in the hospital, her home was a cabin in the Redwoods of La Honda, a stone’s throw from the log cabin where Ken Kesey and the Merry Pranksters so famously partied in 1964. She lived with her cats. Originally there were six and they were all blind. No one would take them in, so Ann did.

l.NbSuLbZWIcnyodRP

Ann was just a thesis away from her Ph.D. A few weeks before she died, four of Ann’s poems were published in American Poetry Review

416250017_370-jpg

Two days before Ann died, she married the gentleman who was her sweetheart of thirty years. Ann’s wedding was held in her hospital room. Those of us in the attendance were required by the hospital to wear yellow gowns over our street clothes. The bride wore yellow too. The flowers and the ring were from the hospital gift shop. The founder and leader of our support group for people with catastrophic illness, a Buddhist chaplin, performed the ceremony. One of us took wedding photographs using a cell phone.  I created a virtual wedding album.The wedding was in its way lovely, but it was achingly sad.

IMG_8407

When Ann died, we sat with her for some time because Buddhists don’t believe the soul leaves the body right away. Ann’s Buddhist teacher – someone she held in high regard – came and lead us in meditation and blessing.

Here – on the third anniversary of Ann’s death – are three of her poems. In closing, I added A Hunger for Bone, the poem I wrote the day her ashes were released to the sea near Julia Pfeiffer Burns State Park in Big Sur. My poem in no way comes up to the gold standard Ann set, but it tells the story. 

Julia_Pfeiffer_Burns_State_Park

– Jamie Dedes


Elegy for Cat Five

Fuck the Glory that is Poetry,
fuck the smell of God in my hair,

The world is the color of driftwood,
this ordinary Wednesday in June.

Let’s have a moratorium on poems
about my shitty news from Stanford

and how I can’t tell heat from cold.
My blood dirty as brown sand in a museum,

and my cat, well, he has news too.
Death woman, skeleton cat,

I turned 57 yesterday when
the veterinarian said No.

I am taking us both to the ocean
for as long as we need:

red sand staining white fur.
I am smelling my cat’s iodine breath,

I am putting my hand in the wound
in my side. Dry brine stinking up

the air, seawater choking the
cawing gull in his throat.

And my face, he’d better
not fucking forget.

One more day leaving me
for a little peace of mind.

.
A Modern Poem (draft 1)

.
I am walking again through an American night,
past police stations with barred gates, windows
glazed warm with doughnuts, patrol cars in the lot.
I stand outdoors seeking coffee: someplace where
eyes will not wander through me when I sit in a red
booth filled with books as women fearing Altzeimer’s
hoard cats. I stay up until dawn, waiting for panic
to subside, to find the meaning in all things
in a city which says I am nothing.

..
I wake in my American forest, from a dream
of being shot: when one lives in a forest one cannot expect
the humane society always arriving in time. I walk through
the cabin and on down the path: moonlight blurs the redwoods,
wind blurs water. I feel like a girl safe in a picture book.
Indoors the television screen shines blue as topaz.
I am walking again through the forest aglow with
snowy owls and see-through salamanders.
Far from eyes broken like windows, and people
thinking they are nobodies, reading the paper
about life being rebuilt by night so that
no one notices it tumbling by day.

 

The Wrong Side of History

Fifty years ago, a house of
pale cinderblock. Sixty miles

north of here, Richmond
California, the poor

mending holes with colored thread.
I live in a house of

unnatural law, I am painting
landscapes in black: horses

and floating carpets of leaves.
When I am ten my father fills my mouth

with dirt for saying I want to die:
a ripped sheet twisted over my eyes,

my ankles hobbled in bed;
I summon the kingdom of horses

where lullabies murmur
brittle-legged ponies to sleep.

When I am twelve the city catches fire:
ruined faces of mares stretch for pages,

and when the tar roof seeps into
my room, I still do not run away.

Say nothing about the comfort of solitude,
stars crowded like sensations under the skin.

Say nothing about the morning blow of light,
the herd coughing on last night’s oily weed

– Ann Emerson


A Hunger for Bone

we scattered your relics, yours and your cats,
chared bone to be rocked by waves,
to be rocked into yourself, the rhythm
enchanting you with cool soothing spume
merging your poetry with the ether,
rending our hearts with desolation,
shattering the ocean floor with your dreams
lost in lapping lazuli tides, dependable ~
relief perhaps after pain-swollen years of
suckle on the shards of a capricious grace

those last weeks …
your restless sleeps disrupted by
medical monitors, their metallic pings
not unlike meditation bells calling to you,
bringing you to presence and contemplation,
while bags hung like prayer-flags on a zephyr
fusing blood, salt, water
into collapsing veins, bleeding-out
under skin, purple and puce-stained,
air heavy and rank; we came not with chant,
but on the breath of love, we tumbled in
one-by-one to stand by you

to stand by you
when death arrived
and it arrived in sound, not in stealth,
broadcasting its jaundiced entrance
i am here, death bellowed on morphine
in slow drip, i am here death shouted,
offering tape to secure tubing, handing
you a standard-issue gown, oversized –
in washed-out blue, for your last journey
under the cold pale of fluorescent light

far from the evergreen of your redwood forest,
eager and greedy, death snatched
your jazzy PJs, your bling and pedicures,
your journals and pens, your computer and
cats, death tried your dignity and identity –
not quickly, no … in a tedious hospital bed,
extending torment, its rough tongue salting
your wounds, death’s hungering, a hunger
for bones, your frail white bones – but you
in your last exercise of will, thwarted death,
bequeathing your bones to the living sea

– Jamie Dedes

© 2011, Ann’s poems, her photo and that of her cat, Ann Emerson estate; © A Hunger for Bone and the yellow flower photograph,  Jamie Dedes; photograph of Julia Pfeiffer Burns State Park in Big Sur courtesy of wordydave under CC BY SA 3.0

MEET POET MARY MacRAE

Mary MacRae (1942 – 2009), English poet

[Mary MacRae] wrote and published poetry for only the last ten years of her life, after ill-health forced her to take early retirement from teaching. She taught for 15 years at the James Allen Girls School (JAGS), Dulwich, London. Her commitment to writing led to her deep involvement with the first years of the Poetry School under Mimi Khalvati,studying with Mimi and Myra Schneider, whose advanced poetry workshop she attended for 8 years. In these groups her exceptional talent was quickly recognised, leading to publication in many magazines and anthologies. MORE [Second Light Live]

Elder

by

Mary MacRae

This poem is an from Mary MacRae’s book, Inside the Brightness of Red.

Reprinted with permission. All rights reserved.

·

A breathing space:

the house expands around me,

·

unfolds elastic lungs

drowsing me back

·

to other times and rooms

where I’ve sat alone

writing, as I do now,

when syncope –

·

one two three one two –

breaks in;

·

birdcall’s stained

the half-glazed door with colour,

·

enamelled the elder tree

whose ebony drops

·

hang in rich clusters

on shining scarlet stalks

·

while with one swift stab

the fresh-as-paint

·

starlings get to the heart

of the matter

of matter

·

in a gulp of flesh

and clotted juice that leaves me

·

gasping for words transparent

as glass, as air.

♥ ♥ ♥ ♥

My profound gratitude to poet Myra Schneider for the introduction to a new-to-me poet, Mary MacRae, and to poet Dilys Wood of The Second Light Network (England) for granting this interview. Jamie Dedes

JAMIE: Clearly, and as has been stated by others, Mary was profoundly inspired by art, nature (particularly flowers and gardens), and love. What can you tell us about her life and interests that would account for that?

DILYS: Mary writes tender and accurate poems about wild nature, creatures and landscape, drawing on her stays in a cottage on an untamed part of the coast in Kent, England and visits to her daughter living in remote West Wales. In her London home, it’s easy to guess from her poems about garden birds and flowers how much time she spent at the window. She almost always sees nature in flux, changing moment by moment, unpredictable, mysterious, a spiritual inspiration. One of her great strengths as a poet is catching movement.

Many of Mary’s poems focus on love between close family members. This may relate to a difficult relationship with her own father, which she sought to understand, and the relationships which compensated (with mother, sister, husband Lachlan, daughter and grandchild). A back problem prevented her from holding her baby daughter and she often refers in her poems to young children. She clearly has a yearning towards them.

JAMIE: She wrote poetry apparently only at the end of her life and for ten years. What were her creative outlets before that? How did she come to poetry?

DILYS: Mary was a dedicated teacher of English Literature and language in a leading girls’ secondary school. She was also deeply interested in music and painting (these are strongly reflected in her poetry). Though she had written as a young woman she followed the pattern of many women creative artists in becoming absorbed into her home life and her paid work, only turning to writing when her illness released her from the daily grind of intensive teaching. The remarkable, rapid development of her poetry shows how strong her latent powers really were.

JAMIE: Was writing poetry a part of her healing process when she was diagnosed with cancer? If so, how did it help her?

DILYS: I’m confident that Mary’s diagnosis with cancer enabled her to change her life-style and from then on concentrate on her poetry, urged by the sense that she might be short of time. There is no evidence that Mary wrote therapeutically to come to terms with her cancer. In fact she only ever addressed her illness in relation to the possible unkindness of fate in cutting her off from beloved people and life itself. The poems written in the last 2-3 years of her life give the impression that her dedication to writing, with the spiritual experiences which accompanied it, enabled her to bear terrible distress. She records this distress, using imaginative and metaphorical approaches to focus it, and these poems make heart-wrenching reading.

JAMIE: Can you tell us about her process? When did she write? Where? For how long?

DILYS: I have the impression that Mary’s life revolved around three things, people she loved, gathering experiences that would feed her poetry (travel, listening to music, visiting galleries) and very hard work in direct furtherance of her writing (extensive reading, attending workshops with other inspirational poets, writing, revising and submitting her poems to criticism from critics she respected). She used notebooks to make a full, accurate record of those experiences – landscapes, human encounters, thoughts – that would feed her work. There is an extract from one such entry in the section about keeping a journal in the resource book Writing Your Self, Transforming Personal Material by Myra Schneider and John Killick. This book also includes a contribution in the chapter on spirituality which reveals much about Mary’s attitudes to life, nature and also her writing process.

JAMIE: Do you have any advice from her for other poets and aspiring poets?

DILYS: Mary was a dedicated writer, entirely sincere in her commitment to poetry as opposed to ‘career’ as a poet. She was always ready to enjoy and praise the widest range of subject-matter, approaches and styles from other poets, providing she thought they were ‘busting a gut’ to get their poems right, and not indulging in the trendy or superficial, which she despised (whether from well-knowns or unknowns). She put much emphasis on wide-reading of both past and contemporary poets and she herself had absorbed a huge amount of other poets’ work, always quoting fully and accurately. She liked using another’s work as a starting pont for her own (the Glose) and particularly admired the work in strict form (including SonnetVillanelle and Ghazal), which began to be more acceptable from the mid-1990s (eg from such poets as Marilyn Hacker and Mimi Khalvati).

JAMIE: Are any other collections of her poetry planned? If so, when might we look forward to them?

DILYS: When putting together ‘Inside the Brightness of Red’, Myra Schneider and I went through the whole of Mary’s unpublished work and selected all those poems we felt were both complete and would have satisfied her high standards. What remains unpublished would be mainly fragments and early versions of poems she did more work on. There will not, as far as we know, be a further book, but Mary did achieve her aim of being a significant lyric poet, whose work is very attractive, polished and, above all (as she would have wished) deeply moving and consolatory.


* The Second Light Network aims to promote women’s poetry and to help women poets, especially but not only older women poets develop their work. It runs weekends of workshops and readings in London usually twice a year, a residential extended workshop with readings and discussions at least once every 18 months and occasional other events. It is nationwide and includes and some members who live outside Britain altogether. Importantly Dilys is the main editor of ARTEMIS poetry a major poetry magazine for women produced by Second Light twice a year for all women poets. It includes a lot of reviews and some articles as well as poetry. Second L. members receive it free as part of their subscription. An e-newsletter is sent out every few weeks. A few anthologies of poetry have been published by the network but now this magazine has been developed books are only produced in special circumstances – such as Mary’s collections.

Thanks to Second Light Web Administrator, poet Ann Stewart, for the following: The books (Inside the Brightness of Red and As Birds Do) can be bought: via order form and cheque in post: http://www.secondlightlive.co.uk/books.shtml or here online: http://www.poetrypf.co.uk/shop.php (typing  ‘ Mary MacRae collection ’ in the filter box will reduce the list to just those 2 books).

THE RED DRESS by Myra Schneider … a poetry reading

Video posted to YouTube by SpokenVerse.

My first reaction is: I want it,
can’t wait to squeeze into
a scarlet sheath that promises
breasts round as russet apples,
a waist pinched to a pencil,
hips that know the whole dictionary
of swaying, can’t wait
to saunter down an August street
with every eye upon me.

But the moment I’m zipped in
I can’t breathe and the fabric
hugging my stomach without mercy
pronounces me a frump.
Besides, in the internet café,
where you can phone Tangiers
or Thailand for almost nothing
fourteen pairs of eyes
are absorbed by screens.
No one whistles when I smile
at boxes of tired mangoes
and seedy broccoli heads
outside the Greek superstore.

By now I’m in a fever to undo
the garment and pull it off.
And for all its flaws, for all
that it only boasts one breast,
I’m overjoyed to re-possess
my body. I remember I hate
holding in and shutting away.
What I want is a dress easy
as a plump plum oozing
juice, as a warm afternoon
in late October creeping
its ambers and cinnamons into
leaves, a dress that reassures
there’s no need to pretend,
a dress that’s as capacious
as generosity, a dress that willingly
unbuttons and whispers in the ear:
be alive every minute of your life.

The Red Dress from Circling the Core by Myra Schneider, 2008

I know that there are a number of women who read this blog who have or are in remission from cancer, including breast cancer. Also there a few who are the caretakers of someone with cancer. Mulling on that today while I acted as scribe and moral support for a friend visiting her primary care physician, I decided that Ms. Schneider would be the next in my periodic and informal sharing of favorite poets. Ms. Schneider’s first poetry collection was published in 1984. In 2000, she was diagnosed with breast cancer. Writing for her – as for many – was a part of the healing process. She journaled two weeks after diagnosis:

I have to hang onto the thought of friends and the relatives and friends of people I know who have survived for years and years after breast cancer. I owe it to myself to manage my panic and to make this a life experience not a death experience, to concentrate on possibilities, to grab every moment of life I can, to use what has happened for writing, to include the awfulnesses but also the plusses. I mustn’t forget the moments of joy: the sun lying in swathes on the grass, the sharp clean cut of the air, the disc of the sun on water. I must keep the words that came into my head about the snowdrops I saw in a garden when we walked to the shops a couple of hours ago. I think it’s the starting point of a poem. MORE

An accessible poet, Ms. Schneider has authored several poetry collections, young adult fiction, and books on writing: Writing for Self Discovery and Writing My Way Through Cancer. The later describes her journey from diagnosis to recovery and encompasses various treatments and their effects, including mastectomy. She provides practical suggestions for using writing in recovery and healing.

This post:

IN MEMORY OF MOM and GIGI EVANS, MARY, PARVATHI, and DEBORAH.

and

DEDICATED TO E, L, A, R, and B.

With love and in solidarity …