*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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7 thoughts on “Researching Chronic Illness is Good for the Environment”
Jamison I became vegan after hearing about the cruelty and environmental impact of raising animals for food. I recycle but sadly someone who works at the center said that only a small percentage of the stuff gets recycled, and families around here with 6, 7 members don’t bother at all so it’s discouraging. Kudos to you for doing what you could when you could. Now just concentrate on getting better.
Thanks Micky! I’ve been a vegetarian for the last 20 years. I tried vegan but I love cheese haha.
My heart goes out to you. I sympathize with a body unable to support the noble desires of the mind. I am more than happy to share the name and number of the woman helping me reverse my ME/CFS. She is technically retired but may have some room. If you are like me, I had so many symptoms I could have have a dozen labels. Fortunately, she is a genius at knowing what each individual body needs to heal. It got worse before it got better but she can coach you through it all. I will blog more about the process – now that I don’t have mud for brains! 😉
The animal debate is difficult. I have been a vegetarian but now rely on clean, well treated protein to heal. I choose to take a Native American approach and revere and thank the animal for giving me health. I commit to honoring them by doing the greatest good for this planet that I can.
That’s great Sara! I hope you keep improving. I’m so glad you found something that works. I have found things that work but as I get better I need to find new things to keep the improvements coming. But It’s amazing how what works for some people doesn’t works for others and vice versa. Thanks for reading!
I wish you continued improvement as well! If you find someone good and effective at taking a bioindividual nutritional and lifestyle approach to healing all ailments, please let me know. I would like to get a list of really good references. ☺ You go bright light!
Hi Sara, I liked your comment re thanking the animals – I see you are a children’s book author! I will check it out for my great nieces/nephews. Would you mind posting the name of the person who has helped you or direct me to your blog? Thanks.
Thank you. Feel free to email me @ email@example.com and I will send you her info. She is 72 and claims to be retired but she also says she will never stop working with people. Haha. I’m trying to find names of other people that do what she does which is take your medical, family and food history and create a bioindividual nutrition and lifestyle program that empowers the body to heal. My blogs are sarawatchornauthor.com and sarawatchorn.blog
I would love to hear what you think and wish you the very best on your journey!