Researching Chronic Illness is Good for the Environment

Researching Chronic Illness is Good for the Environment

*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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How to Become Ambidextrous 

How to Become Ambidextrous 

“It was a shock to have my life interrupted by a very real health problem. I’ve always taken great care of myself and I was pretty sure that was supposed to count for something.”

-Tippi Hedren

I’ve always been a righty. When I played baseball in high school, I batted and threw right handed. I always used my right hand to write, and pretty much anything else you can imagine I did right handed. But almost everything I tried to do with my left hand I was terrible at. Actually, not just terrible, I was clumsy and awkward and kind of resembled someone with full-body numbness trying to have good coordination. I remember playing basketball in middle school and trying to learn how to do a left handed lay-up. My coach might as well have asked me to drive blindfolded.

My struggle with all things left handed quickly turned into jealousy, and sometimes even disdain, for people who could more actively use their left hand. My jealousy appeared every time I saw a lefty hit a home run or finely chop vegetables, but my disdain grew every afternoon as I sat watching my chemistry teacher write her lecture notes on the overhead projector, which I desperately tried to copy down before she moved on. This was a challenge not because she was hasty, but rather because she was left handed and her forearm and shoulder blocked my view of everything she had written.

In these formative years I never thought I would develop good coordination with my left hand, and for the most part I was fine with it. But if, for some reason I did imagine becoming ambidextrous, I certainly never thought it would come as a byproduct of being sick. After all, how could a sick person possibly become ambidextrous? Learning new skills isn’t a top priority for us sick people.

Several months ago I started getting daily IV infusions and subsequently needed the placement of a peripheral IV every week. To give my veins a break I started switching arms. In turn, I would sometimes have the IV in my right arm. Because the IV was often placed in an awkward part of my arm — essentially anywhere that a vein is closest to the surface and most visible without any valves in the way — I often had limited use of that particular arm. Sometimes I only bent my arm a few times a day so the joint wouldn’t lock up and so I wouldn’t disturb the IV, risking a clot or dislodging the catheter. When the IV was in my right arm, for example, it meant I had to do pretty much everything with my left arm. In fact, many of the posts on this blog were not only written on a small iPhone with a greyscale screen, they were done so using only my left hand. Hey, where’s my award? I know, I know, I would try out for America’s Got Talent, but I think there’s a verbal aspect to that gig I’m just not quite up for yet.

Anyway. I recently found an app that lets users write handwritten cards on a smartphone. Then the company prints and mails the card to the recipient. I know, why not just grab a pen and write it myself? Well, because I have a lot of post-exertion exhaustion and pain, the weight of the pen and energy used to craft words with it, make handwriting impossible for me at the moment. So I’m thankful for the app. But still, it’s not without difficult, especially when I have an IV in my right arm.

The other day, for instance, I started to write a card and realized I had to use my left hand. To my surprise, I wrote fairly well. Okay, that’s a lie. When I say “fairly well,” I really mean a five year old could still write better than me. Nevertheless I’m impressed with how I’ve become somewhat ambidextrous. It’s something I never would have imagined prior to getting sick. So I guess that’s something.

*Have you ordered your “Show M.E. The Money” shirt or hoodie yet? There are all kinds of cool colors, there’s unisex and women’s shirts. The profits are being split — half go to the Blue Ribbon Foundation and half go to pay my medical bills. We’re a third of the way to meeting our goal, so please buy as many as you can. They are great for raising MECFS awareness.

Want A Sexy PICC? 

Want A Sexy PICC? 

Did I scare you? Sorry. Despite what the title of this post suggests and based on some of my more explicit stories, you may have thought, “Oh boy, this guy is gonna post a photo of his junk for the entire Internet to see.” If you did think such a thing, well, I guess I’m curious why you’re reading this post and didn’t immediately disregard it. But hey, for the sake of our friendship (and my readership), let’s just pretend you knew I was joking — let’s keep it moving, shall we?

Ha, okay, right, so you saw right through my shameful play on words; you obviously knew the title had nothing to do with an explicit photo of me. But before I explain what the hell a “sexy “PICC” is, let’s back it up for a minute.

In April I was unbelievably sick — unable to chew food, talk, sit-up, or tolerate light. I was essentially waiting to die. Then my doctor ordered the placement of a foot-long IV catheter starting in my arm and running to within a few millimeters of my heart. The IV is called a peripherally inserted central catheter, or PICC for short, and let me tell you, it is anything but sexy. I’m sure there’s a good reason and circumstance for placing a vein-dwelling catheter so close to the heart, but the thought of it still freaks me out. A LOT! I find it especially terrifying because I wasn’t told that the PICC sits so close to the heart until the procedure was over.

A few weeks ago I wrote about the PICC placement and how excruciatingly painful it was for three weeks before I took it out. The pain was unrelenting, shooting up my arm and into my chest. It didn’t stop until I took the PICC out, which itself was quite the experience. There’s nothing like seeing a foot-long tube being pulled out of your arm. I just kept thinking, “Wow, is my arm really that long?” Of course it is, but still.

For several months following the PICC, a nurse made bi-weekly trips to my house to place a peripheral IV in my forearm. To my relief, the peripheral IV was only an inch-long. Eventually my arms started to look rather suspicious, like I had a serious heroine addiction or had taken my last acupuncture appointment a little too far. So after my veins stopped showing up and I got tired of looking like someone’s flesh-covered voodoo doll, I was left with no choice but to get another PICC, or so I thought. After doing some investigating, I found and subsequently decided to go with a mid-line IV. Instead of spanning an entire foot to my heart, it runs a few centimeters up the arm and stops around the armpit.

Last week a nurse came to my house to place the IV and hopefully end my stint as a human pin cushion. Coincidentally, the same nurse placed my PICC back in April. The only difference this time was I got to see his face. In April my eyes were so sensitive to light I had to keep them covered the entire time he was here. At the time I only knew him by his voice which my ignorance led me to think he was a tall, lanky white guy. And in my defense, it doesn’t help that his name is Dean. So last week, when a short Filipino-American man of middle-age walked into my room, I couldn’t help but wonder how the hell he just so happened to have the same voice and name as the lanky, white guy who came last time. Okay, maybe I wasn’t that naive but I was definitely confused. Dean also seemed confused.

“You’re not the same guy I saw back in April,” he said as we seemed to hold a relatively normal conversation, not one involving a severely ill patient who could not talk a few months prior. “Look at you, you’re sitting up, talking, and you have the blinds open. There’s daylight in here. None of this was happening last time. What has helped you so much?”

“Saline,” I replied.

“Really? That’s it?”

“Yeah. It’s been the biggest help.”

“Okay then, well let’s get you an IV so you can keep getting better,” Dean said, setting up a sterile drape on my arm.

Then he moved my arm laterally to a 45-degree angle with my torso.

“Whoa! Look at that! You couldn’t even move your arm an inch away from your body last time, remember?”

I nodded, affirming his observation. Then I braced as he stuck my left bicep with a needle and proceeded to use a bunch of other tools I had never seen before. 10 minutes later I was hooked up to a saline drip and had a mid-line IV to conceivably last me several weeks.

It has been a week since the mid-line placement. I barely feel it anymore and although it gives me some trouble at night when I’m trying to sleep, it has been much better than the not-so-sexy PICC I had in April. In my opinion, the difference has been two things: the use of a shorter IV catheter in my vein, and a decrease in my body’s sensitivity, which is undoubtedly thanks to my improved health. Six months ago a hug felt like being crammed into a trash compactor, so you can imagine how a needle poke and catheter shoved in my vein felt. Now, my body can handle much more pain and pressure. For that, and all my health improvements, I am so incredibly grateful.

*I’m excited to say I recently had an essay published by Men’s Journal. Take a look.

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