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

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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.

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ABOUT THE POET BY DAY

EARTHLINGS, Make the Connection

Horrific. Devastating. Unflinching. If, when you think of farms and ranches, you think of old MacDonald and happy cow advertisements, think again. I figured if I couldn’t watch this movie I had no business eating flesh, going to the circus, or wearing animal skins. I have no business asking other human beings to do my dirty work for me.  I forced myself through Earthlings in part to firm my vegan resolve. I’m probably not the only one to do this. Among other things, I found a video of Ellen DeGeneres on YouTube where she talks about having done the same thing.

Earthlings goes where our best-self fears to tread. Using undercover cameras it takes us inside of farms and dairies, slaughterhouses, labs that do animal testing, fur ranches, and circuses. It shows us the pain our younger brothers and sisters in the animal kingdom suffer for our sakes. It also shows us just how far we humans can go to debase ourselves: at least that was my reaction to seeing people skinning animals alive and leaving them to die slowly, slitting the throats of cattle while they hang alive and upside down, tossing male chicks into a grinder while they’re alive, swinging chickens on a hook just for the fun of it, tossing a live dog into the back of a garbage truck and laughing about it, digging hooks into elephants to train them … you get my drift.  It’s painful to think of the calves that are separated from their mothers to prepare them to be veal and of all the dairy cows and chickens going insane packed into small indoor spaces and never walking the good earth or seeing the sky.

A key point this movie makes is the link between our ability to be cruel dominators of our fellow creatures in the animal kingdom with our ability to be cruel to other human beings. It shows the damage done to the environment as we pursue dominance over nature and not stewardship of it. Both thumbs up on this one. It’s the movie to watch for the sake of our humanity.

The trailer below is not as graphic as the movie. You can view the entire movie for free HERE.

© 2011, Jamie Dedes All rights reserved

Video uploaded to YouTube by 

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

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

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

This year I was contacted by Heather Von St. James who wrote to me saying, ” I am an 8-year survivor of mesothelioma – a rare cancer caused by asbestos exposure. When I was diagnosed, I had just given birth to my little girl and was told I had 15 months to live. After undergoing a risky surgery, which required the removal of my left lung, I beat the odds and created Lung Leavin’ Day as a way to commemorate this day that changed my life forever.

“Lung Leavin’ Day is now used to encourage others to face their fears! One important thing cancer taught me is the importance of acknowledging these apprehensions that prevent us from living life to the fullest extent. Each year on February 2, friends and family gather at my house for a bonfire where we write our fears on plates and smash them into the fire.

“This year, we are asking bloggers to face your fears and raise awareness of this event by virtually participating in Lung Leavin’ Day! I have created an interactive page that tells the full story of this special day, which can be found here: Lung Leavin’ Day

“I would love it if you would check out the page and share it on your blog to help spread the word about Lung Leavin’ Day!”

800px-Kitchenware_Melamine_Plate_RezowanAnd so I encourage you to visit Heather’s blog. Learn about Mesothelioma. Face your fears – whether they have to do with lung issues or other challenges – and break a virtual plate by way of symbolically breaking your fears.

“Every damn breath hurt like hell, but I kept Breathing too. I told myself it would be a privilege to breathe through pain like that for the rest of my life – just knowing each breath was a gift.”  Rachel Van Dyken, American Romance writer

LLD-TalkingPlateIn the video below, Heather tells her story – or so I assume. I have to admit, my own experience with ILD is such that I can’t watch the video or read Heather’s entire story. I am, however, one of the lucky ones. I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 1999 and given two years. This condition turns lungs into scar tissue and scar tissue isn’t permeable enough for breathing.  IPF is fatal, usually within five years of diagnosis. As it happened, I responded to drug interventions and it became clear to all of us that I don’t have IPF.  

We went for years with the diagnosis-of-the-month or year. Now, thanks to my fabulous physicians, my condition is “managed.” I am considered chronic and stable and have a precise diagnosis: Hypersensitivity Pneumonitis, one of the many different kinds of ILD. I have an oxygen compressor and portable oxygen and medications that do not heal but do slow disease progression. I am in an excellent (99% success rate) pre-transplant program at a renown research and teaching hospital.

Heather lives with one lung. I live with two damaged lungs. Neither of us are going to run marathons, but we’ve both beat the odds. We’re both still here with our families and friends and we both live rewarding lives. The age of miracles is not dead and however imperfect our healthcare system is, people like Heather and me would not be alive without the advantages it does offer. Thanks to a combination of the best health care providers, our own internal resources and our families, we experience big and small victories and major love every day.

Please read about and be aware of the symptoms of lung disease and if you have any doubts about your lung health, see your doctor. Take advantage of the tools and expertise available for diagnosis, help and care. Remember that in these matters, timely action improves your chance of survival and the quality of your life as a survivor.

Illustration and photo credits ~  lungs/Patric J. Lynch, medical illustrator under CC A 2.5 Generic license; dish/Rezowan via Wikipedia under CC A-SA 3.0 license