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

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

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

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

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

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

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

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

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

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

© 2016, words and photograph, Jamie Dedes  

RELATED:

• Interstitial Lung Disease, Breathing in America, Thoracic.org
• NYC Survivors of 9/11 Attack at Higher Risk for Chronic Heart, Lung Diseases, Study Shows, Lung Disease News
• A Short History of Veteran’s Lung Disease, Lung Institute
• Severe Bilateral Pulmonary Fibrosis in a Young Syrian Refugee, Cleveland Clinic, Consult QD