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Archive for August, 2013|Monthly archive page

How Chronic Pain Made Me a Misanthropist

In Chronic Pain, Crip Politics / Disability Politics, Identity Politics, Life with Chronic Illness on August 14, 2013 at 8:59 PM

living with chronic head pain

When living with chronic pain, it’s funny how you can find joy in the most mundane things. Like being able to go out for a walk. Or waking up not wanting to squeeze your pillow in god-forsaken agony. Lately, I’ve been feeling even well enough to socialize. That’s a big one in my world.

Except that even socializing is fraught with obstacles. And I don’t mean those of the actual living-with-bodily-pain kind. I’m referring to the sort of inertia that needs to be overcome when you’ve been as socially reclusive for as long as I have. Having never been a social butterfly or a happy-go-lucky type, being struck with something like chronic pain makes the task of socializing all the more cumbersome. Here’s a list of obstacles that I need to overcome in a social encounter, many of which are quite common regardless of your current health status, and some of which many of you will never deal with if you’re lucky:

  • Explaining, in spite of your bourgeois academic credentials, that you’ve been unemployed for four months and (even worse) haven’t so much as attempted a job search.
  • Explaining that, yes, you still live in your parent’s basement in an area you actually despise. And that, in fact, you don’t get along with your parents and actually hardly ever talk to them.
  • Explaining why, while technically living in a large metropolis, you hardly ever go out—even on weekends.
  • Explaining that your last job was a complete shit show and that you lasted as long as you did because of health issues.
  • Explaining to certain people why you’ve lost as much weight as you have. Or, to certain other people, why you’ve gained weight. And aggravatingly trying to remember who saw you when.
  • Explaining the trajectory of your condition(s) to people you haven’t seen in years, sometimes even months.
  • Explaining why your “condition” does not conform to any conventional understanding of illness. Whether or not they completely get it, you need to ensure they at least understand that it’s invisible, hard-to-treat, and incredibly unpredictable. (This is the world of chronic pain, folks.)
  • Explaining that you’ve been too hopeless or nihilistic at times to dabble in dreams about “the future.”

All of these interactions, of course, pertain to dealing with people I have met previously and actually like. This is not to even mention the various ways in which you have to tread inexcusably naïve or insensitive questions like, “Have you tried [treatment of choice]?” or “What’s your plan now [that you’re unemployed]?” Needless to say, the interactions with people you don’t like, don’t know, or both, are even worse. (And chances are, I’ve likely fantasized about the hundreds of ways in which to cause these hateful, hateful people the utmost displeasures.)

None of this is to abnegate the incredible privileges I’ve had (e.g. a roof over my health, economically supportive and unquestioning parents, and yes, my bourgie college degree). But living with chronic pain and chronic fatigue really sucks. Really FUCKING SUCKS. Most especially the chronic pain. It makes the simplest, otherwise innocuous moments, like walking the dog, doing laundry, or making a trip to see a friend, incredibly difficult if not impossible. And if you have politics like mine, you start to see how incredibly loaded even the most basic interactions are.

[A quick disclaimer: I’m definitely not apologetic for not making an effort to stay in touch with people. I have enough on my plate to deal with.  And, I ask myself: if they cared so much, why didn’t they make the effort to come see me? Perhaps they don’t think something as innocent-sounding as “chronic pain” merits the sort of attention that a truly serious condition does.  If you have this mentality, well, then, I say: fuck you.]

Outrage aside, there’s a sad part to this equation, which is the gradual (perhaps not-so-gradual) process of reclusion that whittles down your number of friends. To understand how this works, just think about the sort of nuisances someone with chronic pain likely has to deal with. The fact that pain is “invisible” means people will absentmindedly demand or expect certain things of you, such as an expense report, a “light” conversation, or an ability to stand inside a bus. This can true even if you have other conditions that are visible. And although pain is typically thought of as being externally manifest when one makes classical signs of grimacing and such, even these gestures tend to be ignored by people (and most heartbreakingly by loved ones).

People with chronic pain typically need to work, commute, and buy groceries just like everyone else. They may even be very socially active. And you probably see or even know plenty of folks with chronic pain, even if you don’t know of their pain.

For me, “un-friendization” happened faster than I could have anticipated. It was partly facilitated by the fact that I live in a far-flung area of an already disconnected New York City, and partly by the fact that I fell sick during a transitional time in my life when I was still making friends (I was 23 at the time). If the above list of obstacles resonates at all, it’s probably worth emphasizing that it is only specific to social, not physical, hurdles and is not inclusive of other issues that might make the already difficult process of “staying in touch” awkward or difficult (such as my queerness or ever-evolving leftist politics). It’s not even a comprehensive list within these parameters.

Having given up on a pursuit of connecting with “new” people (including potential dates), there are still challenges to just maintaining friendships. For sure, there are the obvious physical limitations: when you have an intractable, unpredictable hammer-like pounding pain inside your head, you’re grateful if you can even leave your bed to take a piss. But even on those hard-to-predict good days, I’m likely not wanting to mess it up by having an intensely awkward and blood-boiling conversation with a “well-intentioned” friend who either 1) doesn’t know or 2) doesn’t get it.

All things considered, the whole friendship* thing seems hardly compatible with chronic pain. No doubt about it: it’s simply lonely as fuck. And unfortunately, this is a rather common predicament for people who have difficult-to-treat chronic pain. It doesn’t surprise me at all when I read that depression and suicidality are substantially higher for us pain-afflicted folks. (And as far as long-term outcomes are concerned, it definitely doesn’t help that our “advanced” western medicine hasn’t found a reliable treatment for it.)

And before you think of some suggestion of “seeking out a community that understands,” maybe you should do yourself a favor and actually read up on chronic pain first. It wouldn’t be crippling, chronic pain if you could easily get up and walk/drive/commute to places where such supposedly understanding people exist. It wouldn’t be crippling, chronic pain if it didn’t leave you feeling powerless and voiceless at least some of the time.

So, yeah, I’ll continue to “reconnect” with people. But it’s with a certain level of acceptance that most of them will never get it.

chronic-pain-graphic

*To be clear, although chronic pain might make it hard to socialize, it’s definitely not impossible (given that the pain is within tolerable limits). Also, chronic pain can also facilitate stronger ties to people you rely on and trust—even if it means losing those superfluous “friends” you only hung out with at the bar. This said, however, it could still end up making you hate everyone outside this inner circle of trust.

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James Baldwin on the Nature of Dreams

In Creative Writing, Philosophical Musings, Racial Politics on August 2, 2013 at 5:15 PM

baldwin_criticism_america
Today, on the anniversary of James Baldwin’s birth, I felt a need to say something about a man who is indisputably one of Amerika’s most influential writers. Although he was a queer black Amerikan who was so disaffected with Amerika that he expatriated france, his writings have had mass global appeal–a fact that speaks to his incredible finesse at capturing the struggles and hopes of black lives. For better or for worse, his writings still resonate with the racialized Amerika of today.

Since he’s one of my favorite fiction writers, I don’t think I can do any justice speaking for or about him. His novels, and his life more generally, encompass too many themes to adequately address here. But as someone who’s recently reflected a lot on the meaning of dreams, the necessity of dreams, I was particularly moved by an excerpt from one of his novels. As always, his wisdom diffuses past the page and into your soul, revealing the this ineluctable, blurry wall between fantasy and reality, hope and unease.

The world he describes is almost too real to bear. But that’s just how it is.

“The trouble with a secret life is that it is very frequently a secret from the person who lives it and not at all a secret from the person who lives it and not at all a secret for the people he encounters. He encounters, because he must encounter, those people who see his secrecy before they see anything else, and who drag these secrets out of him; sometimes with the intention of using them against him, sometimes with more benevolent intent; but, whatever the intent, the moment is awful and the accumulating revelation is an unspeakable anguish. The aim of the dreamer, after all, is merely to go on dreaming and not to be molested by the world. His dreams are his protection against the world. But the aims of life are antithetical to those of the dreamer, and the teeth of the world are sharp.”
– from Another Country (1960)

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