Cutting Through Bullshit—The (Possible) Advantages of Chronic Illness and Disability

Some years ago, I was reading Nietzsche and it occurred to me to make a note in my journal. Something along the lines of needing to regularly come back to Nietzsche, as he provides a wonderful sort of intellectual conscience. Is this a surprising thing to think about Nietzsche? What I have in mind are such passages as, “[Philosophers] all pose as if they had discovered and reached their real opinions through the self-development of a cold, pure, divinely unconcerned dialectic…. while at bottom it is an assumption, a hunch, indeed a kind of ‘inspiration’—most often a desire of the heart that has been filtered and made abstract—that they defend with reasons they have sought after the fact. They are all advocates who resent that name, and for the most part even wily spokesman for the prejudices which they baptize ‘truths’…” (Beyond Good and Evil. “On the Prejudices of Philosophers,” §5). That is powerful stuff and bites to the marrow. And so I am cautious, in my better moments, to try to avoid succumbing to such temptations, which include being tempted to hold true that which makes us feel better. Along these lines, I take it that part of what it means to have truth as a goal inquiry is that the standards for whether or not one’s inquiry is going well are not ultimately relative to one’s subjectivity.

With all this in mind, I’d like to explore some reasons for thinking about the advantages of being disadvantaged, at least in terms of chronic illness and disability (I’m not including the disadvantages of poverty and racism, for example). I will try to avoid belaboring it, but here is my background.

In 2010 I moved back to Georgia after having been gone since 2002, when I left to go to Iowa to work on a PhD. While in Iowa, I rediscovered a love of nature that had been dormant since I was a kid. After spending a year, 2009-2010, in downtown Washington, DC, I was excited by the prospect of living and working in the North Georgia mountains, at the University of North Georgia. My first year living in Dahlonega I spent quite a bit of time outside and hiking, particularly the summer of 2011. That was also around the time that the barefoot running and minimal soled shoes were very popular. So I was hiking three or four times a week in the mountains wearing minimal soled shoes that summer. By August I developed pain in both feet. For the first month or so it fluctuated in terms of its intensity and location. But eventually it settled in the balls of my feet. My first thinking was that if I simply let my feet rest, they would heal. So that was what I did. I even used the electric carts at the grocery store and bought a push wheelchair to use as much as possible, simply to rest my feet. And while they got better through the fall into the winter, in the spring when I started being more active, they once again started hurting. My orthopedic doctor did not have any idea what was wrong. I went to physical therapy, which accomplished nothing.

By the next August (2012) my feet were worse if anything. At a loss, my orthopedic doctor had a number of blood tests run. One came back positive for a possible autoimmune disease, namely, rheumatoid arthritis. That got me a referral to a rheumatologist, one who was rather aggressive. He started off with more blood tests, only to find out that the previous appearance of a positive was actually false. So, I had chronic foot pain but still no idea why exactly. The rheumatologist thought that I might have another form of arthritis called psoriatic arthritis, which a small percentage of people who have psoriasis, an autoimmune skin condition that can range from mild to severe and debilitating, have. I do indeed have psoriasis, a very mild form of it on my scalp. Unfortunately, there is no definitive test for psoriatic arthritis. So the doctor has to diagnose it based on a differential diagnosis, which is not always easy. As a diagnostic tool, the aggressive rheumatologist wanted to put me on Humira, which is a very powerful biologic medicine. It works by binding with a part of your immune system called tumor necrosis factor. It is thought that tumor necrosis factor plays an important role in autoimmunity, and by binding with it, Humira is supposed to protect you from yourself. However, it also has a number of really nasty possible side effects, such as heart failure and multiple sclerosis, and just plain death. While those may be rare, they are serious enough to make you question whether or not chronic foot pain is worth the risk.

And so, I left that rheumatologist and went to the Emory Clinic in Atlanta. Over a number of years I had various x-rays and MRIs done. None of it revealed anything. While it certainly is good not to hear that you have some sort of permanent damage done to your joints, it is frustrating not having any answers.

In December 2012 I had the good fortune to be able to go to Japan to give a talk at the University of Tokyo. I stayed for three weeks and did pretty well, getting around by using crutches to help take pressure off of my feet. But it seems the three weeks using my hands in that way was akin to the summer hiking. That is, shortly after returning from Tokyo I went to a chiropractor who adjusted my feet, basically simply by popping them, pulling on the toes. Strangely, the next day my toes ached and so did my hands. From that point on my hands have been sensitive, aching and hurting if I do too much, too much yard work, too much video game playing, etc.

The last time I went to the rheumatologist in Atlanta was probably sometime in 2014. While I actually like my doctor quite a bit—she is quite open to listening to me and my crazy theories and does not push drugs on me—she ended up basically throwing her hands in the air. She said that she essentially did not think that the symptoms I was displaying warranted the diagnosis of psoriatic arthritis or any other definitive diagnosis. All she could say was that I had, “joint pain not otherwise specified.” This was a relief in a way. While I still did not have a diagnosis, it opened up the possibility that perhaps the problem was not autoimmune, i.e., lifelong. But ultimately did not change the fact that I could not walk like I used to, could not hike like I used to, could not travel to new cities and explore them by foot for hours and hours, wandering into bookstores, and avoiding touristy places, like I used to. I could still travel, of course, but the nature of it changed and became much less pleasurable (at least so far). One of the things I did before my wife and I went to Hawaii for a three week comparative philosophy Institute, was to get a pedometer and find out on average how much I was walking comfortably a day. It turned out that I could walk on average of between 3000 and 5000 steps a day, occasionally going up to 8000 steps a day. As a point of reference, walking a mile is around 2000 steps.

The above was essentially my story until about three months ago. While I struggled greatly at first to adjust to the fact that my feet were not healing, over the years I learned to get along pretty well. And now in hindsight I realize how fortunate I still had been. The Sunday after this past Thanksgiving I started taking the antibiotic Ciprofloxacin for a mild infection. I had been prescribed it five months or so before that, but because my wife’s mother had taken it and had a problem with her knee afterward, I hesitated. The need for the antibiotic seemed to come and go until finally at the end of November 2016 I decided to go ahead and finally take it. After several days of taking it I began to have pain in my hands that was unusual. On the morning of the fourth day of taking it, I started having pain in my right inside forearm. At this point I looked up the side effects of the drug again and was reminded that it was not recommended for people with arthritis and that it can cause tendon damage for up to six months after taking it.

I stopped taking the Cipro that fourth morning, but that was not soon enough. For the next month or so the pain in my hands and forearms worsened steadily, to the point that I could not type or write, or do basic things around the house like empty the dishwasher or cook food. At the same time my feet steadily got worse, as well. I spent the winter break on the sofa, grateful for Netflix. It became clear that I would not be better before the next semester started. So, I arranged to rent a scooter to get around campus and other places. Now three and a half months later I’m still using the scooter, my feet are worse if anything, while my hands seem very slowly, very, very slowly to be getting better.

From talking to doctors, there is little if anything they can do. For one thing, my pre-existing condition with my hands and feet is still a mystery. For another thing, doctors are loath to agree with you when you attribute new symptoms to some drug that you claim has hurt you. Lastly, as it is my tendons, they take forever to heal anyway, as poorly supplied with blood as they are. While I am still limited with my hands, I can write for a little bit and type a little bit now. But I rely on dictation software for any major writing, such as this. It’s my feet, once again, that are the main problem. To give a sense of things, where before I was limited to an average of 3000 to 5000 steps a day, I am now down to around 300 to 500. And please understand that that is not simply how much I can walk around stores or what have you. Those steps include walking from the bed to the bathroom, from the bedroom to the kitchen, from the kitchen to the car, etc. I hope it is clear that I say none of this with a desire for sympathy. It is merely to contextualize what comes next.

According to Buddhism, which in many of its forms holds to the notion of rebirth (a rebirth that can happen in a variety of “realms,” not just the human), being born as a human is the most fortuitous of all possible forms. This is because if you are born in a lower realm, suffering is more constant, and you may very well not be able to practice Buddhism, as the pain is simply too great; on the other hand, if you are born in a higher realm, pleasure is more constant, and you may very well not be able to practice Buddhism, as the motivation is lacking. But, as a human being, you exist in that sweet spot regarding pain and pleasure, not too much and not too little typically being the case, even in regard to people in great pain (but this is not to say that there are not hell realms in human existence, too).

I personally do not believe in rebirth in the one-to-one sense of one person dies and they are reborn as another person. I do think that in some sense the person I am is “reborn” through all of my interactions with the world; but this is not a determinate one-to-one sense of rebirth. I find Shohaku Okumura‘s take on rebirth to be congenial. He is agnostic about the reality of rebirth in the literal sense, but he is sympathetic to the idea that throughout our days, weeks, months, and years we are continually reborn into the different realms in a figurative sense, some moments we suffer as though in hell, in other moments we act like beasts, in other moments we are ridiculously happy. And, of course, our actions and intentions effect where we are reborn, which realm, even in this figurative sense.

I played with Buddhism from the late 90s until my chronic foot pain started in 2011. And it was in 2012, when I began to take seriously the possibility of an arthritis diagnosis, i.e., something that would be lifelong, that my Buddhist practice really began to deepen. And this is not at all surprising. You suffer, you expect to get better, you don’t, so you suffer even more, and then you become truly desperate. And here is this practice that you’ve been playing with for years that promises to end suffering. So….

Over the years now, since 2011, I’ve noticed a basic pattern: I feel better and my Buddhist practice suffers; I feel worse and my Buddhist practice thrives. Very slowly I have come to sincerely appreciate the fact that in some ways I do better when I’m doing worse. That is, when I physically feel better, I have a tendency to get caught up in things in such a way that while I am physically unbothered, or not as much, emotionally my mood is all over the place and I’m not necessarily flourishing. By contrast, there are times (and they are not always frequent or extended) when I am physically in pain and my Buddhist practice becomes robust in the face of it, and moreover, my mood becomes light, steady, and in some important sense “happy.”

I think that there are at least two related reasons for the phenomenon in the last paragraph. First, one of the primary methods of Buddhism is presence of attention on what you’re doing at any given moment. This works often quite like magic. Imagine some uncomfortable sensation. There is the discomfort of the sensation itself, but often even worse is the discomfort caused by not knowing. That is, not knowing the cause of the discomfort or how long it may last. Just those two kinds of ignorance can change everything. For example, one thing I use to try to mitigate my various aches and pains are topical products containing capsaicin, the chemical in jalapenos that makes them burn. Capsaicin can relieve joint pain; interestingly, it can also cause pain itself, especially a first. The more you use it, the less it burns. And burn it certainly can, especially if your skin is under hot water or in the sun, or there is pressure on it. Not so long ago I had asked my wife to put a large amount of capsaicin between my shoulder blades where I often have muscle pain from sitting up at a desk/computer so much. I was driving somewhere and the capsaicin began to burn; slowly the pain continued to increase to the point that it was ridiculous. My back was on fire. However, looking at me, you would never know. At the time, it occurred to me that if I didn’t know why I was hurting or how long it will last, I would be freaking out at that level of pain. But since I was confident about the why and how long, I was unbothered. Sure, the pain hurt, but the suffering wasn’t there; I could calmly stay with the pain, examining it with curiosity, unafraid. And so it is when we leave the present moment that suffering truly arises. What I mean is that pain is transformed into suffering when the you lose focus on what you are currently experiencing and project forward into the future or reach into the past for real or imagined consequences regarding the present moment. We fail to realize the great depths of our ignorance regarding what is really happening now and what will happen in the future. And failing that we create a narrative that contextualizes our current experience in order to try to give it meaning, in order to try to understand its meaning. “Is this sharp pain in my abdomen merely gas or is it what they will say was the beginning of my end?” Where is this story going that we are living? We can’t stand not knowing, and in our pain and fear we form all kinds of judgments that are ultimately not justified by the present moment. But this is all Buddhism and I want to talk about chronic illness and disability cutting through bullshit, but not necessarily through Buddhism. So…..

The second reason that I tend to do better, at least in some way, when my physical pain is worse and my Buddhist practice is better, is that when you are dealing with chronic pain and disability, you are very much forced to consider what is really important and what is bullshit. Here is one example of what I mean. While it is, perhaps, tricky to say definitively what counts as “cultural” bullshit, and I’ll say more about this below, I would argue that the following are bullshit aspects of our culture: Self-medicating through cheap pleasures that often come at the expense of others; impatience partially engendered by the cult of instant gratification; and ignorance about the various bullshit aspects of our culture is itself bullshit.

While these aspects certainly do not exhaust the bullshit that is to be found, they are prime examples, I think. And what is worse is that we are so ignorant of how easily they creep into our lives, our actions, our desires. For example, let’s say you’re fully able-bodied and you’ve gotten home from work, you’re tired, it’s been a hard day, it’s been a hard year, and let’s say the idea occurs to you that you’d feel a lot better if you ran back out to the store and got some ice cream, even though you’ve been trying to eat better and exercise. But you quickly dismiss any doubts about the ice cream and grab your keys. By contrast, in my case now, particularly with my wife out of town like she is this week, if I suddenly have the idea for ice cream, I have to really think about it. My hands are well enough that driving is not such a problem, particularly given the short distance to the grocery store. But once I get to the store, I can’t just walk around, get the ice cream, check out and leave. I have to find a parking place close enough to the entrance that I can make a quick walk to where they keep the electric carts at the front of the store. I usually can find a place close to the entrance, especially with my temporary handicap parking permit, but it is not guaranteed. One thing I’ve learned since having the permit is how often handicap spaces are filled. And then once I go in the store, there is a chance that there won’t be any electric carts available or that they won’t be properly charged. Now I can use my scooter, but that has two drawbacks, though only one if I am only getting ice cream. Namely, I have to have someone’s help to get it out of the back of my car, as it is too heavy for me to lift by myself. And it only has a small basket, making it a challenge if I am to buy more than a couple of small items.

Hence, if I have the idea for ice cream, I have to think about much more than my weight. I have to ask myself whether it is really worth the whole grocery store experience described above to get it. And that prompts me, of course, to ask why it is that I really want it. And if I’m already pretty tired, my threshold for what I’m willing to put up with is rather small. And, thus, if the ice cream is supposed to be a kind of self-medication that I’m ultimately denying myself, then I am forced to confront in a potentially more healthful way what needs medicating. It is also, thus, an opportunity to pause and smell the bullshit. Not all chronic illness is like mine, of course; but I take it that all chronic illness and disability create some level of relevant challenge.

You may well think I’m making ridiculous the innocent desire to get ice cream after a long day; however, I want to suggest that we radically underestimate the long-term effects that these sort of actions of “micro bullshit” have on us. We fail to see how they, despite their innocent appearance, habituate us in bullshit ways. Every time we engage instant gratification, no matter how trivial it may seem, we further habituate ourselves away from patience. To take one example.

One of my favorite lines is from the author Jim Harrison: “The danger of civilization, of course is that you will piss away your life on nonsense” (The Beast God Forgot to Invent). Harrison has a great eye for bullshit, and it is wonderfully lacking from his writings. But what exactly is bullshit? Are certain kinds of activities and/or actions intrinsically bullshit? Or is something’s being bullshit more a matter of how it is done? Against the idea that some actions are intrinsically bullshit, we might note that in our inclusivist culture, an aspect of it that is not bullshit, people are going to feel uncomfortable claiming that certain activities are intrinsically bullshit. That is, most of us seem to believe that the kind of life we live, and not just the kind of  career/occupation we have, ought to be up to each of us as individuals with our individual preferences. John may be able to imagine nothing else but being a carpenter, while Jill can imagine no such thing; for her it must be law. Part of the meaning of “bullshit,” as I’m using it, is a kind of superficiality or inauthenticity—though that does not exhaust its meaning as the discussion above should demonstrate. But who is to say what is superficial and/or inauthentic. Is Paris Hilton superficial and inauthentic whereas Noam Chomsky is deep and authentic? Not everyone is going to agree; however, in this instance I don’t think the lack of agreement is an issue. I’m guessing that those whom I would deem competent would more or less agree. But I don’t think Paris Hilton and Noam Chomsky are the interesting sorts of examples. It is the subtler, deeper but less obviously rooted, items of bullshit that I am more concerned with. For example, how much time on Netflix or Facebook crosses the bullshit threshold? And I ask this as someone spends a good bit of time on both.

When you are fully engaged in a culture’s practices, it is very difficult to consistently question those practices. For one thing, being surrounded by their daily repetition keeps them perpetually normalized. You may come to suspect that something is amiss with all the time you’re spending on Facebook; but that suspicion may be hard to maintain when, one, Facebook is already a habit, and, two, everyone you know on Facebook’s doing it: it’s normal. But being chronically ill or disabled can make it easier to maintain one’s gaze on the bullshit, seeing it as bullshit. This in the sense as described above (with the example of the ice cream), but also in the sense that I suspect that many of the bullshit aspects of our culture are tied to the ablest aspects of our culture. To say that our culture is ablest is to say that things like architecture, furniture, social spaces are all designed for people who are “normal.” That is, people who can get around more or less easily on two feet, using their eyes, ears, etc., i.e., people who are not disabled (and though I have spoken in physical terms, I’m not excluding ableism regarding mental health). If nothing else, if it turns out that huge swaths of our culture consists of bullshit, while that culture is simultaneously ablest, then it follows that there’s going to be a pretty good correlation between things that are challenging for disabled people to do and bullshit. Might there be a more intrinsic connection?

Clearly, I have only skimmed the surface regarding the possible advantages of chronic illness and disability in regard to bullshit. In what other ways might there be advantages? And I hope it is clear that I am not downplaying how much chronic illness and disability can compromise one’s ability to flourish and live the life one so wants to live. Nevertheless, I think that chronic illness and disability provide for a possible and desperately needed window into what is wrong with our culture–for tragically, there is so much bullshit and it is so dangerous.

May all be well, be loved, and be at peace.

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