Unusual and Tragic and Alive

“When your own life is threatened, your sense of empathy is blunted by a terrible, selfish hunger for survival.”

– Yann Martel (Life of Pi)

Lately I’ve been reflecting on the ups and downs of having a chronic illness — in my case, two illnesses, myalgic encephalomyelitis (chronic fatigue syndrome) and Lyme disease.

Mostly I’ve been thinking about how the upswings in my health always follow a downswing, and how both can be extremely hard to navigate.

While the improvements to my health haven’t been as dramatic in recent weeks, my health remains on an upswing.

But perhaps it is the deceleration in my progress that tempts me to say that the upswing I’m currently on is just as difficult as some of the downswings I’ve had in the past. But I won’t say that for three reasons: (1.) I’m not sure I truly feel that way (it could just be a momentary feeling), (2.) I don’t want to influence anyone’s opinion, everyone’s experience is relative, so mine might not correlate with the experiences of people reading this post, and (3.) logically speaking, ups and downs on a wavering health spectrum are so different it wouldn’t be fair to say they are equally as difficult to deal with.

Instead, I think they are, for lack of a better comparison, two different styles of punching used in the same fight.

And that’s what people living with chronic illness do. We fight. Those of us who endure being sick for years are anything but normal and live a life that is, by and large, a mixed bag of tragedy and triumph. As Dave Eggers once wrote, “We are unusual and tragic and alive.” Those of us fighting through the downswings, and desperately trying to maintain the trajectory of our upswings, are tragic and maybe even a bit unusual, but we’re also alive. Very alive. And not just by our pulse and blinking eyes, but by our will to stay alive and keep fighting.

Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others–and I am one of those–never give up. We fight and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the very end. It’s not a question of courage. It’s something constitutional, an inability to let go.

– Yann Martel (Life of Pi)

On the surface people living with chronic illnesses may not appear full of life, but we are definitely alive. We put more effort into essential tasks like brushing our teeth than some people use at any point in their entire day.

We might not get out much, society might look at our lives as uneventful and boring, but the reality is quite the opposite. We always have something going on; while we may not be able to remember the last party we went to or vacation we took, our lives are never dull.

For me personally, there is always something out of the ordinary going on in my house. I’m either shuffling my body into an inflatable bathtub to bathe, or I’m trying to figure out how to get outside for the first time in more than two years, or I’m having a foot-long catheter inserted into my (wait for it… Not that kind of catheter) arm so I can have blood drawn and get daily infusions to ensure I avoid another downswing.

As you might imagine, I will avoid a downswing in my health at all costs, mainly because of the uncertainty that accompanies them. I hate uncertainty. But even so, there is a certain peace I find when my health takes a dive. Maybe not initially, however; at the first sign of a dip in my health I become very frantic and try to do everything in (and out of) my control to boost my health back up, usually to a null effect. And that’s when I have to surrender to how helpless I am. So I usually just resolve to ride it out until my health swings, or rather inches, back up.

Surrendering to my illness was especially difficult during the last downswing in my health; it took me from working full-time and living on my own, to completely bedridden and eventually unable to speak or eat solid food. For months, years really, I could only wait for my health to improve. I tried treatments, sure, and perhaps they were the catalyst that pulled me out of the tailspin I was in, although ultimately, I believe time was the biggest factor. No matter how you look at the situation, it was a matter of time before my health rebounded, the hard part was not knowing how long I had to wait for my health to improve.

And for that reason I have never been more scared of my health deteriorating. I don’t know what will happen next. Will I remain on an upswing? Or will I take a dive?

Before I became bedridden I knew my health might take a dive, but I never thought it would put me near death. NEVER did I think I would lose my ability to speak or eat due to an illness which, up until a couple years ago, had failed to make itself visible in my outer appearance.

Even after hearing stories of people with MECFS dying, or nearly dying, the possibility never occurred to me. The people who became that sick were of a different planet, or at least a different disease. Now I am sure that I inhabit that same planet and that same disease.

Recently I got out of bed again; I can speak and eat also, but the stakes are just as high, if not higher than when I first became bedridden. One false step–the wrong treatment, pushing my body too far, or catching another secondary illness, could put me back down to a quality of life that is simply unbearable for any prolonged period of time. And while I may have made it out of the woods, or so to speak, I’m still very much stuck in the forest. Maybe I’ll never fully be out of the forest in terms of the vulnerability of my health, but so be it. I’ll be dammed if I’m going to use this upswing in my health to fret over the next downswing.

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A Personal Plea To Protest 

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I’ve never been one to protest, well, unless you count not shopping at a certain large retail store whose name rhymes with Falmart. So what I’m about to ask of anyone reading this might seem a bit hypocritical. But that’s okay, I’m gonna ask anyway.

Those of you who have been privy to my struggle with ME/CFS for the last six years probably didn’t know how bad things would get, I certainly didn’t. It’s a dangerous, scary, and misunderstood disease that not only needs more awareness, it also needs more private and government research funding.

Before I got sick I would have given priority to a disease like Parkinson’s or MS, but now I know the exact serious of MECFS; it nearly killed me. For that reason I ask you and anyone you are willing to share this post with, to donate to one of the amazing organizations busting their butt to better understand this mysterious disease. I personally recommend the Open Medicine Foundation or Blue Ribbon Foundation. Both are at the forefront of what needs to change in our healthcare system in order to cure MECFS.

Lastly, and perhaps most importantly in the immediate, is protesting on September 27th. This Tuesday people from all over the world will unite as part of the Millions Missing campaign. 25 cities scattered around the globe will feature protests. Here in the U.S., protests will be held everywhere from Boston and D.C. to Seattle and San Francisco (City Hall at 11 am). It is expected to be the largest and most widespread MECFS protest ever. I hope you will participate. If not for the cause itself, then for me or one of the many lives this horrible disease has tainted. In many cases, including my own current situation, attending the protest is physically impossible. That’s why we need your help.

Now I’m not asking you to kneel during the national anthem, or to stop eating solid food for 18 months, I’m merely asking you to be present for 10 minutes out of your day. And if you can’t make it to protest in one of the major cities, perhaps you can do something in your hometown like tie a blue ribbon to your car or mailbox, or sport a bracelet on your wrist.

At the very least, I hope you will take a few seconds on Tuesday to first remember how much this disease truly sucks, and then to post a message on your social media accounts using the Millions Missing hashtag (#MillionsMissing).

For any or all of the aforementioned participation I thank you in advance. It is these tiny gestures that appeal to my emotions and touch me the most.

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A One Man Nudist Colony 

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I was completely naked for the better part of an entire year. I wore no clothes. None.  Now, before you file this post away on your “too much information” (TMI) blacklist, first let me promise to keep the intimate stuff to a minimum. That being said, some stuff may be unavoidably revealed. It’s kind of inevitable when talking about being naked.

What people don’t often realize, and perhaps they don’t want to, is that sick people spend a ridiculous amount of time naked. Why? It feels sexy. No, I’m joking (although it does feel a little sexy). There are actually a number of legitimate reasons. Putting on clothes can take a lot of energy, muscle strength, flexibility, and joint mobility. In my case, an obscenely impaired blood pressure and blood volume made it nearly impossible for me to move my body enough to get clothing over my head let alone my extremities.

Another reason is hygiene. Even if I was able to get clothes on my body, the physical repercussions would have been so intense it’s safe to say those clothes wouldn’t have come off until I had regained my strength days, or even weeks later. And that, of course, would mean bathing with clothing on, which I’m not sure if you’ve tried, but it’s just about the least amount of fun you can have with clothes on, and is also probably the least amount of fun you can have while bathing. How do I know, you ask? Oh, I tried it. A few times. And I stubbornly learned that bathing with clothes on, and then leaving them on, is undeniably more miserable than smelling like a dumpster for a week.

I also briefly tried wearing button down shirts. I soon ran into the trouble of getting my arms through the sleeves, so I had someone cut the sleeves off a bunch of old Tommy Bahama shirts from the thrift store. And just like that I looked like Rick “Wild Thing” Vaughn from the movie Major league, rocking a sleeveless tuxedo. Unfortunately it was the tacky floral patterned shirts made for middle aged men that ultimately turned me away, and I soon returned to my life as a nudist.

So I resolved to remain in my own personal nudist colony for a few more months until IV treatments helped my blood pressure, and in turn, allowed me to finally keep some damn clothes on. And I have to say it felt really good. I felt like a human again. So every day after washing up, I would struggle to get a pair of boxers around my hips. This was particularly difficult because I couldn’t lift my hips off the mattress.

I should say, however, prior to resuming my life as a clothed person, I did occasionally allow visitors into my den of nudism. But these guests, fortunately or not, were always wearing clothes. And sorry to ruin the facade, but I was almost always covered by a sheet. Darn.

Still, even in the moment, the ridiculousness of the situation was ripe and often very comical. Once, during a visit from someone very special, I felt the need to have a little fun. No, not that kind of fun. Get your mind out of the gutter. The visitor was a good friend from college, during which time we had a running joke about helping each other bleach a certain unmentionable body part notorious for getting soiled. You don’t like where this is going, do you? Yeah sorry, so much for leaving out the intimate stuff. Maybe I’m the one who needs to get his head out of the gutter.

So my buddy arrived, and naturally the first words out of his mouth were, “Hey man! I’m here for the bleaching.” Now, normally I would have gone with the joke and immediately simulated getting undressed while telling him I was ready for the procedure, but there were two problems: I couldn’t talk and I was already naked. So instead I shifted the sheet off my upper thigh, and then, after five solid minutes of tracing letters on his hand, I was able to convey that I was already naked and ready for the bleaching. “Bring on the bleach!” I said.

Ha hmm. Anyway, where was I going with that story again? Yes, right, I was naked for a year. But recently I started feeling better and I’m once again back to wearing clothes. I have discovered linen shorts, which are just about the comfiest things, besides pajamas, that I’ve ever worn. And I’ve found that my old tank tops from the gym are much easier to get on than a normal t-shirt or, say, a Tommy Bahama shirt with pink hibiscuses.

Overall, I must say, it’s wonderful to wear clothes again. Why? It feels sexy, of course.