*A version of this article first appeared in December 2016 in The Oregonian.
Six years ago, before developing chronic illnesses, I considered myself a steward of the environment. Each morning I got out of bed and dumped a large bucket of shower water into the toilet to trigger its flushing mechanism. If it had recently rained I would harvest water collected in an open garbage can, siphoning its contents into a smaller container, which I then carried around my yard and used to water my plants. It was a morally rewarding experience, but also an exhausting process. Back then I was passionate about the environment and I had both the time and energy to give to offsetting my environmental footprint. Now, however, things have changed. I still care about the environment, very much in fact, but my own personal struggles now supplant much of my social responsibility.
I haven’t been able to get out of bed in two years and my aspirations of helping save the environment have, in such time, inevitably fallen victim to my poor health and ailing body. I first became sick in 2010 and was eventually diagnosed with two chronic illnesses — tick-borne Lyme disease and myalgic encephalomyelitis. The latter is a mysterious multi-system disease commonly referred to in bureaucratic circles as chronic fatigue syndrome — its trivializing government-given name. Many patients choose to use an abbreviation of the two names — ME/CFS.
The truth is, both of the diseases I suffer from are egregiously underfunded by the National Institutes of Health (NIH), and consequently must rely on sporadic research funded through sparse private donations. In 2015, the NIH only provided $24 million to research Lyme disease and ME/CFS received an even more abysmal sum of $6 million, a lesser amount than that allocated to research food allergies. During the same period, $589 million was given to research Alzheimer’s disease and $281 million was allocated to research asthma.
There is undoubtedly a lack of research funding for many diseases, even after the 21st Century Cures Act was recently signed into law by President Obama. The bill is slated to help the NIH make great strides with conditions like Alzheimer’s and cancer, but it seems unlikely that more obscure diseases, albeit ones that afflict millions of Americans, will reap any substantial benefit anytime soon.
Initially, I thought I had a bad case of mononucleosis and that would soon pass. But in January 2015, my condition deteriorated to the point I could no longer get out of bed. Then I lost my ability to chew food, talk, or sit-up in bed, and was taken to the emergency room severely malnourished, dehydrated, and near death.
As one might imagine this is how my aspirations of harvesting rain water and charging my electronic devices with solar energy gave way to my struggle to survive. Carrying around gallons of reclaimed water was the furthest thing from my mind.
Now, after months of severe illness, I face the reality that my environmental footprint has grown. With the help of others directly involved in my medical care, I use hundreds of plastic bags, nitrile gloves, and absorbent pads every week. Jumbles of plastic IV bags and tubing are jammed into the trash bin beside my bed. Bucket after bucket of water is not used to water plants but instead brought to my bedside so I can bathe — an hours-long process equating to what most people can accomplish with a few minutes in the shower. Because I’m confined to my bed, bathing is not only cumbersome it results in multiple laundry loads of wet towels, cloths, bedsheets, and pillow cases every day.
Even as I urge my caregivers to reuse some supplies, there is only so much I can do to combat my eco-footprint, which some people may mistakenly argue is still smaller than when I was healthy. I may no longer drive or use running water to bathe, but my material consumption has ballooned, and almost none of it can be reused. IV supplies — plastic tubing, needles, syringes, and a bevy of other medical supplies kept in my home, are single-use only. And while I can’t speak for other diseases, I can say that when I was sick but still healthy enough to get out of bed I drove thousands of miles around the state to hospitals, doctor’s offices, and infusion centers all neglecting my eco-consciousness for a pursuit of a cure.
Although there are likely more impactful ways of preventing climate change, I believe that if diseases like mine were given more government research funding, it would not only improve the quality of life for some sick people, it would also abate the environmental impact of their medical care. So while the Trump administration will almost certainly try to derail much of the progress made toward preserving the environment in the last decade, perhaps a small concession will be had if the NIH follows through and uses some of the money from the 21st Century Cures Act to research ME/CFS, Lyme disease, and other chronic illnesses that destroy lives and contribute to polluting the environment.
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