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Posts Tagged ‘medical industrial complex’

When A Trip to the Emergency Room Leads to More Trauma

In Uncategorized on April 28, 2015 at 4:07 PM

A fear that is the stuff of nightmares–the fear of being paralyzed in a pain-ridden body–became realized a few weeks ago in late March.

Evening One

Without a doubt, one of the most insidious aspects of living with multiple sclerosis (MS) is its unpredictability.

It fundamentally undermines any conception of time measured against a normalized life span, and explodes the assumptions we attach to youth and productivity. In fact, with MS, flare-ups (or relapses) unfold so unpredictably that I often fall asleep anxious, uncertain as to whether I’ll wake up the next morning capable of feeling or moving my hands or feet.

The spontaneity of auto-immunity is so stark that the everyday assumptions many of build our lives around–including something as innocuous as being able to walk to your car or bus stop–is called into question.

More so than most, it is an anxiety-ridden life that unfolds in a very different temporality, one of existing day to day, hour by hour.

A fear that is the stuff of nightmares–the fear of being paralyzed in a pain-ridden body–became realized a few weeks ago in late March.

It actually started with me being startled awake by head pain and a skin-crawling, difficult-to-describe discomfort that came with the feeling of having a golfball lodged in my brain. I was weak on the left side of my body, and couldn’t hear through my left ear. I knew immediately that something was wrong. Horribly, frighteningly, unquestionably wrong.

And just like that, over the course of a single night’s sleep, I was pounded by the reality that yet another flare-up had struck. As annoying as that friend who complains about her job, yet again, I was getting so sick of it…and yet I couldn’t draw my attention to anything else. The uncertainty made me cower into silence. How could anyone help, even if they claimed a desire to?

Not only was I physically distant from others, I also felt alienated from my own living flesh. Pain-killers enabled me to lift myself out of bed, haunted as I was by the all-too-possible possibilities: more inflammation, more irreversible nerve damage, more disability.

So when I walked into the ER that night, I patiently endured the hours of lying on a cot, enclosed–yet again–by the round-the-clock din of medical madness.

The neurologist who came to see me was a young white dude who looked like he had just recently graduated from medical school, hardly older than my twenty-six years.

Following an awkwardly slow entrance, the neurologist machine-gunned me with questions that went from the slightly tedious (such as when I was first diagnosed and the nature of my initial symptoms all those years ago) to the downright aggravating (including such irrelevant questions like ‘what/where do you study?’ as well as condescending ones like ‘how do you know this is a flare-up?’).

Given my experience, his neurological examination was more exhaustive than it needed to be, more so suggestive of a performative display of doctorly showmanship than a pragmatic, diagnostic exercise.

Of course, my exhaustion and aggravation with being poked and prodded like a lab rat for an hour had only been tempered by the possibility of receiving useful treatment—in this case, a round of anti-inflammatory steroids (Solu-Medrol) that has been the standard treatment for acute MS flare-ups for decades.

So, of course, when he came back stating that my symptoms were insufficient to ‘recommend’ such a treatment, my heart immediately sank. I had gotten treatment under lesser circumstances, but there I was, immobile. I felt like I was losing a grip on my body.

And I knew that the stakes were too damn high to not strongly voice my disagreement. I tried to counter his stoic machine-like answers with the authority of self-knowledge, the sort of corporeal awareness only I had access to, but rather than genuinely validate my experiences his answers only implied my sheer stupidity, scientific ignorance and lack of objectivity (“I’m sure that what you’re experiencing feels real to you…”).

Once I cornered him into an awkward, submissive silence that permeated an air of guilt (why should he feel guilty?), I realized I was only wasting time.

Fueled by rage and sadness, I muttered a quick “I need to get the fuck out of here.”  I quickly gathered my clothes and, for the first time, left refusing to sign any paperwork.

[S]he became irate and began a long, abusive tirade that consisted of victim-blaming and reprimanding me for things that had nothing to do with the provision of care.

Evening Two

Maybe in an alternate universe things could have ended there, with me finding my way home in the dark, waiting for a meeting with my actual neurologist, getting a round of steroids, and seeing my symptoms wane. But hell never ends on an predictable note.

Frustrated that my worst relapse in years was unfurling without so much as a batted eye, I clung to the hope that I could manage my body’s auto-immune response through sheer will power and good nutrition, stuffing my kitchen with fish, avocados, nuts, vitamins and greens.

It was an illusion of control uncomfortably situated alongside another element: a deeply-rooted premonition that what had happened overnight, unpredictably, wasn’t over.

I started to fear my body, which felt like a ticking time bomb of auto-immunity. Although I tried to distract myself through hours of Netflix binging, I could feel the inflammation spreading–the incontrovertible sign that my T-cells had betrayed me again in a senseless civil war.

When the bomb finally exploded, my usual “take-it-as-it-comes” mentality shifted to panic.

In a flash of minutes I went from watching TV in bed to being overcome with a spontaneous swelling of heat to the head. Just when I thought my heart couldn’t sink any further, it plummeted. I felt shards of glass cut through my mouth before gasping within a deep, pulsating warmth. I couldn’t swallow. I couldn’t breathe. I had been sucked into an inferno.

I did what I think most people would have done under my circumstances by calling 9-1-1. But in trying to answer the operator, I realized that I had also lost my voice. So I struggled to articulate my symptoms and location as the most apocalyptic of thoughts circulated in my mind.

I started to wonder if I had been deceived by the MS literature. Was I dying? Did I catch a life-threatening infection? Did I actually have something more severe than MS? By this time I was squatting outside my building, crouching on a street corner overlooking the I-5, facing the toxic silence of a suburban night.

When the paramedics came, I tried to answer their questions. I struggled to voice “MS,” but their initial interpretation of “meth” made it clear what pre-existing conclusions they had come to.

As I was hoisted onto a stretcher, it was a police officer who demanded that I submit an ID, even though I was unable to feel my fingertips as I felt for my wallet. That I was being criminalized by white professionals as I gasped for air and felt my blood pressure hit the roof says a lot more than any critical analysis ever could.

I ended up in the same hospital as before, although incredibly worse because I had been refused treatment. This time, I didn’t have it in me to put up a fight. My eyes were shut firmly, partly because of my sensitivity to light then, partly because I didn’t want to believe this was happening. I was thus squinting when the second neurologist pulled back the curtains; all I could see were the contours of a white lab coat and blonde hair.

She wasted no time in complaining that she had to drive half an hour to see me at 1:30 in the morning—an expressed grievance that struck me as unprofessional and insensitive under the circumstances. Her peremptory bedside manner also made it clear that I was the last person who’d receive empathy that night.

She insisted that I describe my symptoms at length, even after I had expressed that I was under crippling pain and having difficulty speaking. After the neurologic exam, she reiterated the fact that she came out here in the middle of the night to see me and, with an air of exasperation, reasserted her right to get to know her patient.

With a heavy throbbing pain still traveling down the length of my spine, she asked me a difficult-to-socially-navigate question of what I was studying. Making a half-hearted effort to be discreet, but too pained to give it much thought, I bluntly told her that I was under a lot of pain and not in the mood for “light talk.” At this point, she became irate and began a long, abusive tirade that consisted of victim-blaming and reprimanding me for things that had nothing to do with the provision of care.

In a patronizing tone, she told me that she had read the online correspondences between me and my neurologist in the hospital’s system, and despite a misreading of my doctor’s message, remarkably claimed that I didn’t understand my own condition.

The condescension continued as she asked me (under conditions in which I was unable to speak freely) to describe MS and how it unfolds, improving upon the last doctor’s superiority complex in treating me as someone incapable of understanding complex scientific information, let alone as someone whose lived bodily knowledge should have been respected.

Over the course of the night she echoed the previous doctor’s refusal to provide treatment, and began to hurl a series of judgments that had nothing to do with “care”: the implication was that it was my fault for “demanding” Solu-Medrol, for breaching “trust” with the hospital, for not submitting to their unquestionable authority.

At this point, between feeling vulnerable, abused, and incapable of self-defense, I didn’t even bother to challenge her in what was an obviously unfair battle: I repeatedly muttered “OK” with every passing judgment hoping to get her off my case. Not only was no treatment to be had again, I was now having my wounds salted while lying on my back.

Escape from the Inferno?

Late into the evening, I was thrown out of the hospital, forced to walk home unsteadily, under pain, spasticity, dizziness and blurry vision.

Somehow I made it home, traumatized and wishing the American medical system would succumb to slow, torturous, and ever-painful flames.

Things got worse before they got better, but in brief, my MS specialist eventually prescribed me the steroid infusions I knew I desperately needed, and weeks later I’m still dealing with a longer-than-necessary recovery.

It’s too early to tell whether the damage is reversible. To be sure, I’ve had a myriad of negative experiences with doctors, hospitals, and the medical industrial complex that preceded this incident. But the callous insensitivity and outright abuse I was subjected to at UCSD’s Thornton Hospital has been particularly memorable, even terroristic and traumatic.

In an age of senseless police shootings, drone attacks, and militarized border deaths, I didn’t need a reminder for how destructive and self-centered humans can be.

I had been rendered literally speechless, and still, I am speechless when thinking about how inured we’ve become to the ruthlessness and greedy entitlement of those in power.

Questions that shouldn’t be questions are foregrounded in this experience: What kind of world is this that a single night of sleep for a privileged white doctor is rendered more important than someone’s overall health and livelihood?

What kind of world is this that a sick man is criminalized for something he had no control over, and then subjected to judgment and condescension while his pain is trivialized and ignored?

The saddest part of all this, however, is the fact that I had surrendered to their oppressive logic and internalized the not-so-subliminal messaging: that is, that my life just isn’t worth saving.

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How Chronic Pain Shook My Faith in People

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.

An Activist’s Struggle with “Acceptance”

In Chronic Pain, Health Justice, Philosophical Musings, The Revolution on January 29, 2013 at 12:39 AM

In Buddhist lore, there is a story about a woman named Kisagotami who suffered from the death of her only child. In her grief and desperation, she went to the Buddha hoping that he would know a way to bring her child back to life. As the story goes, the Buddha told her to bring him a handful of mustard seed—and that such seed needed to come from a household where no one had ever died. The woman agreed to this task and immediately went about going from house to house in search of the mustard seed. However, after visiting one household after the other, she realized that there wasn’t a single one where death had not visited. Acknowledging this sad fact, she returned to the Buddha who in turn told her, with great compassion, that she was not alone in her grief. Death—the ultimate sign of life’s impermanence—was a natural part of human existence.

Image

Kisagotami coming to the Buddha with the desire to resurrect her child.

This now-mythic story appears at the beginning of a chapter on suffering in a book entitled The Art of Happiness (1998), co-written by the Dalai Lama and psychiatrist Howard C. Cutler. In the book, Cutler interviews the Dalai Lama to examine the Buddhist prescription for finding happiness in a life badgered by constant stress and suffering. Regarding the story summarized above, they write: “Kisagotami’s search taught her that no one lives free from suffering and loss. She hadn’t been singled out for this terrible misfortune. This insight didn’t eliminate the inevitable suffering that comes from loss, but it did reduce the suffering that came from struggling against this sad fact of life… Although pain and suffering are universal human phenomena, that doesn’t mean we have an easy time accepting them.” [emphasis mine]

As I’ve noted in previous posts, I began looking into Buddhism seeking answers: a way to deal with inscrutable health issues that created an impassable chasm between my current sickly living and the life I had become accustomed to. For sure, my life before was filled with struggle—but it was one where I found fulfillment and hope in the very process of struggling. Being in the thick of a fight gave my life meaning—even when I knew I was up against impossible odds.

Today, my chronic pain prevents me from moving forward the way I once secretly envisioned. Whether I acknowledged it to myself or not, I hoped that at this point in my life I’d be more engaged in explicit activist efforts, working side-by-side with my communities, developing old friendships while making new ones. And while some of that has occurred, my invisible pain has kept me bed-ridden more times than I can count. My entire worldview has been altered by a web of health conditions that makes simple survival—getting by day to day—a struggle. To avoid slipping into a seemingly inevitable abyss of loneliness, I sought a philosophy that dealt directly with the issues that now mattered to me most: coping with pain and illness, finding a sustainable way of living in peace without compromising my revolutionary integrity. The dharma seemed to bear that promise, and I’ve been adamantly trying to learn as much about Buddha’s philosophy ever since.

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Front cover to the 1998 bestseller co-authored by the Dalai Lama

All of this said, I quickly found myself dealing with an internal turmoil. An earnest desire to learn more about the dharma resulted in many questions on my part, and I sensed a common motif between many of the issues I was confronting. Namely, I sensed a friction between struggle and acceptance, two paths of action in a world filled with decision-making junctures. The story of Kisagotami highlights the role that both struggle and acceptance play in Buddhism and in our daily lives. Are there struggles—like the internal struggle Kisagotami had against the death of her child—that should be tempered with acceptance? Is acceptance always the way to finding peace and happiness in this world? The more I examined the questions of when to struggle, when to accept, the more I realized that this was an incredibly nuanced discussion that merits explicit attention.

Below I will attempt to explain the emotional/philosophical quandary in question, first by examining how I came to the quandary in the first place. As the discussion is highly detailed, I fragmented this written exploration into parts meant for easier access and readability. It is part autobiographical, part historical, part philosophical, and part social and political commentary. I encourage readers to read or skim through sections as they see fit.

My Path: From Revolution to Dharma

I hesitate to use the word “revolutionary” to describe myself, largely because of the ways in which that label has become colored with meanings that seem to obfuscate more than clarify, but I would most definitely say that I see a need for “revolution.” Having grown up in a working-class immigrant family in the heart of Empire, seeing daily the costs of our run-amok capitalist world on the very livelihood of my family—and my own personal suffering—it’s hard for me not to desire change. Not some pennies-and-nickels reformism, but a veritable radical revolution that will bring an end to elite favoritism and greed, and lessen the unjustifiable suffering of the world’s oppressed. So before I became severely ill, I had already suffered and struggled through depression, suicidality, and constant efforts to prove myself in academic environments where who you knew was more important what you knew.

But things changed as I became involved in political struggles, building an activist’s optimism that infused my life with meaning. Although I battled depression and fatigue while I worked long hours, it all seemed worth it. As Victor Frankl notes in Man’s Search for Meaning, individuals who suffer with purpose are more likely to survive through the most hellish circumstances. And having spent years working around immigrants’ rights, housing, and labor rights, and building a career in political education, I felt fulfilled in being able to fight the good fight. Things were never easy. Everything seemed to be a struggle. But I was at least healthy enough to put up a fight.

Things radically changed in a short period of time as a tornado wrecked havoc on my body, leaving irremediable changes in its wake. My brother’s paradoxically long-but-young life of suffering was over, but a new set of struggles had only just started for me. As if the Universe had left me with the pieces of his unresolved struggle. Like my brother, I started a downward path of debilitating symptoms, a lessening in quality of life, a withdrawal from the communities that gave me a sense of personhood and hope. Chronic pain had set in, and as months rolled by and as one medical treatment after the other failed me, my future started to seem bleaker and bleaker.

“What kind of a life had I in store for me now?,” I thought. One where I was in constant pain, unable to pursue the dreams that once brightened the landscape of an already-arduous life?

I couldn’t find solutions for my intensely personal struggle in the activism or revolutionary politics that became embedded in my identity. At best, perhaps a theory for understanding how my autoimmune condition arose, an understanding of the larger picture of transgenerational suffering and marginalization that led to where I am now. But reading Marx or Alinsky or any other revolutionary writer provided no prescription for what to do with my body, mind, and spirit. (And, of course, the literature from mainstream biomedical industrial complex only offered weak suggestions.)

I felt like a soldier down, too wounded to fight side-by-side other activists, taken away from the battlefield when that was the very experience that gave me energy. I became a homebody for once in my life as my pain made spending time outside too uncomfortable. And much like anyone else first learning to cope with chronic pain, I wanted to treat it and get it over with. I wanted to think that it was like a terrible flu or a broken bone, something that could heal with the proper assortment of pills, diet, and exercise. And given that this was pain, I wanted to put the healing process on turbo-drive so I could go quickly resume life as normal.

Time made me realize that this was nothing like a flu or a broken bone. Whenever I felt any relief I was quickly slammed against the cold concrete of interminable pain. I came to truly recognize my former able-bodied privilege—and to this day, I feel stuck in a perpetual straddling of an amorphous line between healthy and unhealthy. Most disturbing of all was my realization that I wasn’t going to be soothed by the answers of our dominant, seemingly effective system of medical institutions (what many recognize as the primacy of allopathic medicine). Since I was already critical of the medical industrial complex, and since I had already opened my heart to yoga and meditation, I chose to trust my gut and move from there.

In my research I learned about very different paradigms of health and healing. I learned that unlike the positivist approach that underlies the allopathic medical establishment (feigning absolute “objectivity” in its efforts to maintain power over human minds and bodies), other forms of medicine—such as homeopathy, traditional Chinese medicine, or Ayurvedic medicine—were very overtly affiliated with philosophies that examined the entirety of human experience and the interconnectivities of the Universe. Unlike the current Western medical establishment, embedded as it is within a capitalist-postmodernist zeitgeist, the other forms of medicine I investigated treated the body holistically, as being connected with something vaster and more Supreme. Rather than treating the body like a machine with various interchangeable parts, these other medicines saw the interconnections between mind and spirit (way before the emergence of ‘psychoneuroimmunology’). They saw how stress could impact the body, and how practices like meditation and yoga could remedy these impacts—all without the need for potent, potentially harmful pharmaceuticals.

Reading about the medicinal practices of yoga and meditation that originated in India, I was slowly drawn into studying Buddhism. I was intrigued by the dharma’s focus on impermanence and its willingness to examine dukkha (translated as suffering or stress). I found a way of thought that directly addressed illness and suffering and gave a prescription for how to cope with these. It gave me a sense of optimism much in the same way that activism did for me before. Although I had done yoga and meditation before, I started to take these very seriously now that I understood, more intimately, how stress can deteriorate one’s health. For certain, I started these practices for quite selfish reasons: improving my health. But over time I was drawn to the worldviews that these practices emanated from, and so I kept reading and researching vigorously.

Unsurprisingly, what are likely naïve questions on my part began to surface. Having come to see struggle as a part of our existence, a part of our survival, even a part of our happiness, I started to have issues with the way “acceptance” was discussed among certain Buddhist writers. Wasn’t acceptance, after all, a form of complacency? How does acceptance of suffering lead to peace and happiness, for is it not the struggle against suffering that enables us to overcome it? Furthermore, the mantra-like focus on changing one’s “perspective,” “looking inward,” and “taming the mind” all seemed to explicate larger socio-political problems onto highly individualized cognitive appraisals (this is a point I don’t wholeheartedly disagree with, but lack of space prevents me from engaging this point any further). I was baffled and intrigued by this seemingly large conundrum.

I once asked for advice from an energy healer (an obvious act of desperation if one ever existed). His suggestion was that I shouldn’t seek to change the world. “There’s nothing wrong with the world,” he said. The world is full of beauty and goodness, and there’s no need to change it. His very suggestion implied passive acceptance.

All of this seemed to go counter to my education as an activist. I never questioned whether there was suffering in the world, and I never questioned the importance of struggle. Collective struggles are what enabled us to achieve certain victories that many of us (really, the most fortunate among us) take for granted today: an eight-hour workday, weekends, the ability to work without fear of injury or the ability to go to a hospital if we do get injured. Of course, many of these victories are being curtailed as we speak, but fighting seemed to be the key to seeking the world of peace and happiness we wanted. In my mind, sitting back and devoting our energies to accepting our suffering—interpreted in the wrong way—could lead to the sort of interpretation given by the healer who offered me “advice.” Coming from a place of affluence and privilege, it was easy enough for him to suggest an individualistic path of focusing on one’s own mind, on acceptance. But that struck me as completely unacceptable.

And I started to encounter a similar sort of advice being propounded by more self-identified Buddhists in essays and films. It was as if collective struggle was worthless, or at least, not the right way to solving the world’s problems; rather, it was turning to our minds, learning acceptance, that was crucial. My confusion was augmented when I read about Buddhist activists who held views that were admittedly more palatable but nevertheless question-raising. Briefly put, I encountered what seemed to be a dialectical friction between struggle and acceptance.

What’s in a struggle?

Having become accustomed to a paradigm of ‘struggle’—both in my personal life, and in my way of understanding social conflict and power dynamics—I recently started thinking more deeply about its relation to suffering and how it was playing out in my disease-ridden life. Upon questioning myself on the matter, I immediately realized, in spite of their oft-accepted conflation, that struggle is not suffering. At the very least, they’re not equivalent in the way we typically understand these terms in the English language. One can struggle for higher wages, respect, security, love—and these struggles, while they may involve some level of suffering, can be exercises that confer fulfillment and purpose to our lives. As an action, struggle can involve contending with a difficult situation or challenge; suffering, on the other hand, is an experience that can result from loss, failure, or mental unrest.

I also realized that although the concept of struggle was constantly on my mind, the very term finds form in different meanings. We have collective struggle and personal struggle. We struggle against issues within ourselves (against illness, confusion, fear or general unhappiness) as well as without (against an abusive boss, a hot-headed partner, environmental injustice and war). Struggle can be conscious and voluntary (as when we choose to fight back against the police) or unconscious and involuntary (as when we struggle to remain alive after being beaten). A ‘struggle’ can be a small tussle in a boxing ring or a large-scale power play between forces of corporate domination and the preservation of people’s livelihoods. Additionally, what I realized for myself was that being able to struggle with community meant something far different than this more personalized subjugation of struggling with chronic pain and health issues. And it is this difference between collective and personal that I want to give a closer look.

Undoubtedly, written history is rife with examples of collective struggle, almost invariably a struggle between those with less power and those with more. Whether we examine the examples of historical interplays between plebeians and tyrants, slaves and masters, it is clear that people have long forged common bonds and fought against mutual enemies. Although history is always written by the powerful and winners of wars, lurking beneath is the undeniable truth of people’s revolts, battles, and struggles against the oppression of emperors, monarchs, and entrenched elites. Occluded from mainstream history texts are the individual plights and perspectives of those of an oppressed class, whether they be the plebeians of Rome, the untouchable castes of India, Japan, or Tibet, or the peasants and slaves of the Mesoamerica. In spite of what we’re taught in schools, the brutal examples of global imperial colonization and domination that resulted in an immeasurable loss of life and culture among indigenous Americans, Africans, Asians, and non-continental nations did not occur without protracted wars, rebellions, and individual mutinies. Certainly, the very many people’s revolts have left indelible markers on the historical landscape, but were quickly suppressed and forgotten via the willful dictates of the powerful in particular times and spaces.

Of course, one need not look deep into the historical canon to see examples of collective struggles of what we commonly call the ‘common folk’ or ‘the people.’ The American and French Revolutions would have been impossible without the vital support of the supposed commoner (although, as critical historians have seen in both cases, the more powerful of the ‘oppressed’ quickly gained the helm while the individual plights and perspectives from the lower classes rarely made it into the history books). The protracted labor struggles that came in the advent of industrialization in Britain and the United States gave rise to new reconfigurations and models of organizing that we continue to utilize today. And although many today look to the revolutionary movements of the late 60’s and early ‘70s to find examples of collective struggle (from antiwar demonstrations to women’s rights to black, indigenous, Asian and Latina/o struggles for liberation), the socially-aware observer will find all sorts of examples of collective struggle in our “postmodern” informational age in the form of multiscalar progressive organizational coalitions and networks (e.g. Right to the City Alliance, Take Back the Land,  the various independent struggles lumped under the ‘Arab Spring,’ Occupy Wall Street and its offsprings, Yo Soy 132, and Idle No More).

The examples of collective struggles are endless and I can do no justice here trying to engage them all. But as a non-religious person trying to critically engage with Buddhist thought, I couldn’t help but wonder what Buddhist scholars thought of collective struggles, particularly people’s resistance struggles, much of which was necessarily violent. If, as I hinted earlier, acceptance meant compliance with an unjust brutal world that was shaped (and could be changed) by humans, then this was an acceptance I wanted nothing to do with. It reeked too horribly of thoughtless compliance and bourgeois ideology. But when I thought of historical examples of Buddhists fighting in the trenches against ostensible injustices, I began to really question whether Buddhism (a religion or spiritual system of thought that has as many varied interpretations as any other religious/spiritual system) had a single, homogeneous understanding of acceptance—and, for that matter, struggle and suffering.

Buddhists in Collective Struggle

In thinking about Buddhists in collective struggle, the first example that came to mind was the famous role of Buddhists in the Southeast Asian War (aka Vietnam War). I thought back to the memorable account of a Buddhist monk setting himself on fire in a public square in Saigon (June 1963) to protest the U.S.-backed Diem regime. This, of course, was all I was taught in my high school U.S. history course. Researching the topic further, I found information that resonated with my knowledge of history and politics in the Americas—information that is deliberately ignored, obfuscated, or suppressed in the most accessible outlets of public media. Although I make no claims of being a historian (let alone an “objective” one, which does not exist), I will try to briefly narrate what are verifiable accounts:

Thich Quang Duc, a Buddhist monk, burns himself to death on a Saigon street June 11, 1963 to protest alleged persecution of Buddhists by the South Vietnamese government. (AP Photo/Malcolm Browne)

Thich Quang Duc, a Buddhist monk, burns himself to death on a Saigon street on June 11, 1963 to protest persecution of Buddhists by the U.S. puppet government of Ngo Dinh Diem. (AP Photo/Malcolm Browne)

The history of Euro-American imperialism in Southeast Asia dates back to the so-called Age of Exploration, becoming most clearly manifest in the military conquests of France in a period between 1859 and 1885. As with other examples of imperial-colonial domination, the people of what was then called Indochina fought endlessly for self-government and basic civil liberties. After generations of struggle against French rule, another imperial power (Japan) came into the fold following the defeat of France to Germany during World War II.

It was under oppressive Japanese occupation that a communist-nationalist liberation movement, the Vietminh, came into power with a Marxist-Leninist revolutionary, Ho Chi Minh, as its leader. As Howard Zinn (1980) writes in his renowned chapter on the Vietnam (Southeast Asian) War, the Viet Minh successfully defeated the Japanese and its puppet government in 1945, celebrating their victory by issuing a Declaration of Independence  that modeled the U.S.’s. This proved to be a short-lived victory, however, as French forces (now liberated from the Third Reich) began bombarding communist-led Vietnam in 1946. This was the beginning of the First Indochina War that lasted until 1954.

The Geneva Conference of that last year dissolved French Indochina and partitioned the region into four independent countries: Laos, Cambodia, North Vietnam (under the Viet Minh government), and South Vietnam (under Emperor Bảo Đại). It wasn’t long before this partition of nations led to conflict, primarily in a Cold War geopolitical environment that drove the McCarthyist U.S. into “defending” its Southern sphere of influence. After a U.S.-backed coup d’etat by then-Prime Minister Ngo Dinh Diem, a staunch anti-communist who blocked efforts for democratic elections, the socio-political atmosphere of South Vietnam quickly became heated. In a nation that consisted mostly of poor rural laborers who were Buddhist, rule under a Catholic U.S.-puppet president (who had recently moved back from living in New Jersey) was completely insufferable. By siding with large landowners, much-needed land reform for most of the population was never implemented. He imprisoned and killed communist-supporters and critics of his corrupt regime while replacing locally elected leaders with his own men. In 1960, a National Liberation Front was formed in South Vietnam that united various strands of Diem’s opposition, including (most importantly) disgruntled peasants.

By 1963, Buddhist discontent circulated after Diem (who for years implemented policies favoring Catholics) placed a ban on flying the Buddhist flag. In droves, Buddhists had protested the ban by publicly flying their flags and facing government gunfire (and in many instances, death). A turning-point was reached when Mahayana Buddhist monk Thich Quang Duc, with the support of several other monks and nuns, performed a self-immolation that was publicized around the world. Many Buddhists thereafter followed his example, following his last words in a letter written immediately before his death:

“I call the venerables, reverends, members of the sangha and the lay Buddhists to organize in solidarity to make sacrifices to protect Buddhism.”1

In the ensuing years, a number of other monks set themselves on fire in a flagrant dramatization of what was truly a people’s oppositional movement. Given the vast abundance of literature about the Southeast Asian War, there is no need to recapitulate the obvious facts. However, it is noteworthy that a largely rural peasant counteroffensive in South Vietnam with a substantially weaker military arsenal defeated a Goliath superpower. This is perhaps one of the greatest testaments in recent history to the power of collective struggle against inhumane injustices.

Another prominent example of Buddhists engaged in collective struggle is showcased in the fight for Tibetan independence. Much like with Southeast Asian Buddhists, the struggle among Tibetan Buddhists involves a long history of fighting against imperial powers. For centuries, Tibet’s autonomy was challenged by nearby Chinese and Mongolian empires as well as by a brief effort by British forces (in 1904). The year following Mao Zedong’s takeover of China in 1949, the People’s Liberation Army entered Tibet and immediately began to assert influence on the Tibetan government, headquartered in the capital city of Lhasa. In 1951, under significant duress and following defeat at the Battle of Chamdo, representatives of the young Dalai Lama signed onto a seventeen point agreement with Mao’s regime. The agreement affirmed Chinese sovereignty while claiming to provide for some degree of Tibetan autonomy.

In the years following, however, considerable unrest brewed under oppressive Chinese military rule, most especially in the eastern Tibetan section of Kham. There, the native Khampas faced starvation, beatings, and imprisonment as many of them (numbering in the tens of thousands by the late 1950s) chose to join the resistance. Kham leaders, without the explicit approval of the Lhasa government, contacted the CIA under President Eisenhower to request support—which it did, by training and arming Tibetan guerrillas. Needless to say, this strategic U.S. support was given as part of a larger effort to subvert the imperial foe of Communist China.

As the Tibetan resistance movement spread, many Tibetans in Lhasa started to agree with their local Tibetans in Kham. On March 10, 1959, after years of Chinese military intervention and a fear that the Chinese would abduct their Dalai Lama, several thousand Tibetans gathered around the Dalai Lama’s summer palace 2. This launched an uprising (celebrated annually by Tibetans) that was eventually crushed and led to the exile of The Dalai Lama and other Tibetans to Dharamsala, India. In the years that followed, hundreds of thousands of Tibetans who stayed in Tibet were executed in the guerrilla warfare that ensued (again, with the intrusion of the CIA). Along with the extreme and brutal loss of life came a replication of an oft-seen pattern that has persevered since the early 16th century: colonization in the form of territorial occupation and cultural co-optation, marked here by the destruction of thousands of Tibetan monasteries and cultural institutional as well as the coerced influx of Chinese from the interior.

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Tibetans gather around the Potala Palace in Lhasa on March 17, 1959.

A recently produced documentary, The Sun Behind the Clouds (2010), examines in-depth the contemporary issues facing Tibetans, torn between clashing interpersonal views and divergent spheres of imperial influence (those of China and the United States). Although the detailed politics of Tibetan independence are beyond the scope of this review, what’s clear is that there exists an ongoing collective resistance among Tibetan Buddhists against Chinese imperial rule. I find that my attempt to understand the dialectic between acceptance and struggle within a Buddhist paradigm is illuminated by the conflicts exposed in this film. Whereas the Dalai Lama demonstrates a willingness to negotiate with (and even forgive) the Chinese government, those supporting the Tibetan independence movement, including many Tibetans and non-Tibetans, within Tibet and beyond, seem willing to engage in further collective struggle. This schism that places many Buddhists at odds with a Nobel Peace Prize-winning spiritual leader makes it clear that choosing between when to fight back and struggle, and when to forgive and accept, is a highly contentious terrain.

The Meanings of Personal Struggle

As with individual Tibetan Buddhists who must choose between resisting, accepting, or finding a middle ground, all humans are challenged to make decisions about when to fight and when to stand back or run away. Although there can be no collective struggle without personal struggle, I’ve come to understand the importance of acknowledging the latter as something in itself, as something quite different. Of course, there is much that intertwines collective and personal struggles: as two examples, personal issues can be shared by others in the community, helping build cohesion; and community struggles, which often work to create mass consciousness, may challenge individuals to take sides. However, I may also deal with personal struggles that others may not share. This is something that requires much nuance to explain, but briefly put, even if I suffer from conditions (chronic pain and multiple sclerosis) others do share, the uniqueness of my symptoms, medical history, etc. makes this an incredibly personal struggle. (You can even choose to see this as another dialectic, between the personal and the collective)

Of course, this notion of personal vs. collective is nothing new. There is a widely-held belief that through our inherent humanity we are also all unique individuals with unique needs, unique relationships, and unique histories. Canonical history itself shows us that, even when we forge common bonds and build collective struggles, there are almost always cracks in any surface of homogeneity. One need only consider examples of well-known historical struggles (e.g. women of color in the feminist movement, blacks in the early U.S. labor movement, trans-people and other marginalized queers in the gay and lesbian movement) to see that movements are often fragmented by sub-group differences. At the more micro level, divisions are also fostered by personal differences, even within well-organized political groups (e.g. the American Anti-Slavery Society, the Wobblies, Students for a Democratic Society, the Black Panthers).

Figuring out how to navigate a social landscape of strategic political coalitions and nuanced viewpoints is never easy, as any one actively engaged in community struggles can attest to. Identity politics, philosophical views, spiritual beliefs, and economic well-being all collide in our conflict-ridden world. This is not to say that unity and solidarity are impossible—just that they are contingent upon a recognition of each other’s intrinsic humanity and individual differences. Even when we are seemingly well-situated in a group, collective, or movement, each one of us must contend with problems that are intensely singular, sometimes threatening to any belief in shared humanity or “one-ness.” In my case, the very real threat of loneliness emerges from intensely personal medical/socioeconomic/spiritual struggles around which it’s hard to foment movement or solidarity. In my brother’s case, I saw how a rare ailment and a set of conditions very few could relate to brought upon despair and social withdrawal.

It is all this, of course, that led me to seek answers beyond a conventional Leftist political paradigm. I’ve started to wonder what happens when we no longer have the energy to fight. What do we do when we’ve exhausted all our possibilities of struggle? What do we do when (physical) struggle is no longer viable? What if compromise, submission, or downright resignation are the most rational choices?

Moments of Acceptance

I have no doubt in my mind that I am conflating many issues from multiple scales of experience. But my own experiences lent themselves to a very complex understanding of what struggle and acceptance mean, and it is the latter that I turn to next.

Not surprisingly, like the term ‘struggle,’ ‘acceptance’ has variegated meanings that shift from one moment to the other, one space to the next. Unlike ‘struggle,’ which has been a forceful word in my vocabulary for years, ‘acceptance’ echoed strangely within the pre-articulated limbo of my mind. When I conjured up examples of how the word could be used (“to accept one’s fate,” “to accept payment,” “to accept one’s apology”), I realized that my understanding of the word “accepting,” as used in the Dalai Lama’s Art of Happiness, could be entirely muddled or even misguided. I thus decided to look up its definition on dictionary.com:

Needless to say, the alternate definitions of acceptance left me confused. In the context of Buddhism, I was left with many possible interpretations: When writers talk about acceptance of suffering, do they mean that we must receive suffering with approval, like a gift from the heavens to help us reach enlightenment? Do they mean that we must take it like foul-tasting medicine, awful to bear but good for the soul? Or does it simply mean that we must believe that suffering is a fact whose undeniable veracity we must assent to? All of these may be possibilities, and for all I know, maybe all true. Certainly, the evident semantic issue is not helped by the fact that these writers are translating ideas from Japanese, Chinese, Sanskrit, and Pali texts which were in turn written by scholars who did not write in the Buddha’s (unknown) native tongue.

Yet, even in contending with the confusion, I came to certain realizations about what acceptance does not mean. Acceptance does not mean complacency, subservience, or willful ignorance. Acceptance does not mean admitting defeat. Acceptance does not mean falling into despair. Acceptance does not mean giving up.

I realized these things when noting that resignation, complacency, and defeat are nowhere in any of the writings or videos with Buddhists discussing ‘acceptance.’ And the word ‘struggle’ (which has the less-ambiguous meanings of “to contend with an adversary or opposing force” or “to exert strength, energy, and force”) bears no apparent conflict with the meaning of acceptance. Wanting to resolve the issue, I decided there is no contradiction between struggling and accepting, and that, in fact, the two often work in tandem. For instance, when accepting the fact that you’re up against an incredible enemy (whether that be your mother, your boss, your partner’s ex, your government, or advanced neoliberal capitalism), you may decide that struggle may be useful if not blatantly necessary. Likewise, when struggling against a difficult situation at home, you may choose to accept the situation, accept its difficulty, and accept the fact that you are only human.

During the time I had my first significant MS flare-ups, I had to deal with a number of experiences that coerced me into acceptance. The first notable instance was accepting the fact that my brother was approaching death. I saw how hard my parents struggled with this notion, and though their reactions were understandable, I couldn’t help but feel as if it was (like Kisogatami’s story) a struggle against an undeniable fact of life. When they chose not to disclose to my brother the doctor’s intention of putting him in a hospice facility, I yelled at them because I thought it was dishonest and unhelpful in the long-term. None of this, however, gets at the fact that each one of us was dealing with my brother’s impending death in different ways. We were united in our suffering—and yet our responses, our struggles, were markedly unique.

Shortly after news that my brother’s life was as visibly short-termed as the sands at the top of an hourglass, I suffered a flare-up that gave me intense vertigo for a week. After recovering and going back to work, I experienced severe dysesthesias that made getting by on a day-to-day basis excruciating. From my desk in Manhattan I read about the encampments at Liberty Square, feeling at once disconnected from the world and my body. Just months after playing an organizing role for an earlier demonstration on Wall Street, I was angry that my body was not letting me join the fight. The stress of my brother’s health, my parents’ reactions, my alienating job, and my newly-formed health problems began to unravel in my body. Rather than voluntarily accepting issues that were boiling up for years, I was forced—finally—into submission. At that time, I was too caught up struggling against my new stressors (my disease, my disabilities, my parents’ failure to accept the undeniable) to continue my struggle against the old (“the system,” corporate greed, the non-profit industrial complex, and my internal propensities to loneliness and depression).

In my continuous turmoil and struggle that slowed the pace of time, the months of October and November trudged on by painfully. I was incapable of walking during one week in November, during which time I wondered what would happen to me, my brother, and my family. Shortly after my brother was transferred to a hospice facility in Brooklyn, I was able to make my way down there alone, albeit with obvious impairments: my feet and hands periodically numb, my energy drained. Making my way into the hospice facility, I was surprised by how unfazed I was at the sight of dying bodies. I found my brother cold asleep in his room and chose to take advantage of the time by reading my book on a hallway bench. It wasn’t long before an elderly white woman—presumably a volunteer from the church—sat next to me and asked me who I was waiting for.

In my typical, New York-conditioned skepticism, I gave her a curt and somewhat-dismissive answer: “My brother.”

I just didn’t know how to respond. I didn’t even want to speak. But she persisted.

“What’s his name?”

“Anthony.”

“How old is he?”

“Twenty-six.”

Before long I was telling her that I was dealing with MS, that I had just suffered continuous flare-ups in a short period of time, and that I wasn’t sure whether I would be at my brother’s bedside when he moved on. My voice felt monotonous, detached, cold.

And in an attempt at a conciliatory tone she said, “There’s only so much any of us can do. We’re only human. And sometimes we just need to accept what we’re able to do.”

It was a painful learning experience, for sure, but I did learn to accept—in a post-superficial way—that I was person with a body and that I was thus prone to illness, aging, and death. Slowly, too, I saw my mother’s anxiety-ridden face melt into a calm obeisance, as if she understood that the inexorable mysteries of God were beyond her. As if this particular struggle was found to be no longer sensible and worthy.

And it is in what we both experienced that I’ve come to appreciate another (emancipatory) meaning of acceptance: letting go. Letting go of an obsessive need to control all aspects of life. Letting go of views that no longer make sense in our actual spatio-historical context. Letting go of what we think our lives are, and letting go of who we think we will become.

The Middle Way

In thinking about this turning point in my life, I realize that struggle and acceptance have always coexisted. After all, my struggle to get by with illness continues, but I accept that this is now a part of my life.  You can accept the existence of struggle, or (as Kisagotami did) struggle against an acceptance of our impermanence.

Thinking in a way that acknowledges a dialectical co-existence between acceptance and struggle lends itself to all sorts of transformative analysis. For instance, although Buddhist monks in Vietnam struggled against the Diem regime for years, it was likely an acceptance of death that enabled some of them to set themselves on fire. And in Tibet, while many continue to struggle against the oppressive Chinese regime, many also accept that the fate of the country is beyond the workings of a single player.

Acknowledging such co-existence, however, doesn’t offer the definitive resolution one might seek. As I’ve noted earlier, the problems with mere semantics creates an issue with framing a struggle-acceptance dialectic, and trying to untangle meanings from context and using them for practical ends is an incredibly arduous challenge whose purpose may ultimately prove worthless. With respect to the semantics issue, we can easily find ourselves in a rut of arbitrariness if, say, we can accept our struggle, or struggle with our acceptance, or accept and struggle at the same time. We can easily find ourselves reconfiguring meanings ad nauseum, shifting the meaning of ‘struggle’ and ‘acceptance’ at will while moving about like a pendulum in frictionless space. And once we’re able to reconfigure meanings in a relativist fashion, cherry-picking which definitions or meanings we choose to utilize in a particular context, we have to contend with undesirable consequences, such as the ambiguities of how to decide and act. We can, for instance, interpret the Dalai Lama’s (and other Buddhists’) advice on accepting suffering as implying, by the very fact that it was even suggested, that acceptance is itself a struggle—and, absurdly, a struggle we must accept. This potentially infinite regress reeks of nonsense and vacuous non-sequiturs that give us no basis for action.

Although all of this reads like a perplexing koan, I do find a saving grace in Buddhism’s very understanding of impermanence and the cyclical nature of life. Within this view is a recognition of the world as both changing and immutable, something shaped by one’s point of view and consciousness. As we are susceptible to highly polarized views, we are advised, in our search for peace, to find a “middle way” between extremes in thought and feeling. Much like a synthetic resolution to a Hegelian dialectical quandary, the “middle way” might be more than just an approach expounded by the Dalai Lama around the issue of Tibet. It may actually mean that no one perspective can give us Truth, and that our peace and happiness lies in an art of balancing (and shifting between) decision-making polarities: whether to be violent or non-violent, to be forgiving or unforgiving, to be struggling or accepting.

To be sure, this is a most irresolute of resolutions—but so is the nature of philosophizing on life. What bothers me most, however, is how such inconclusivity will be understood. I can’t help but hear a Left critique that says that any “middle way” is automatically a compromise in a war between enemies, a most despicable form of concessionary politics that uses divide-and-conquer to pare the edges of a revolutionary momentum. Maybe. Maybe not. Although I’m prone to be sympathetic to such a view, would it really apply in all cases? I’ve come to think that “middle way” approaches are more likely to be de-radicalizing accommodations in the context of collective struggles, but when it comes to personal struggles, a “middle way” approach may offer a much-needed balance in the aim for mental clarity and corporeal health.

And when it comes to the question I first presented—of when to accept, when to struggle—I will deliberately avoid universalizing maxims of ethical behavior (even at the likely expense of seeming like a post-modern relativist). As simple as it sounds, I find this to be true for me: I don’t think we will find an answer that makes sense for all of us all of the time. There is a certain relief that comes from this recognition, this letting go of a need to control the world under a paradigm of universal truths. Realizing this, I’ve decided that I need not find answers in Buddhist thought, but can rather allow new thoughts and resolutions enter through the personal dharmic road that led me here.

I’ve thus decided that there are moments when it makes sense to struggle—often with all the passion our bodies and souls can muster. I’ve also decided that there are moments when we must accept that, as humans, there is only so much pain, suffering, and injustice we can bear alone.

Doing a bit of word-play, I would also like to end by adding that we can also accept into our hearts not only the truths about illness and death, but also the beauties and joys of simple living. We can live with a revolutionary acceptance of different forms of life, one that goes beyond a superficial multicultural tokenism to a realization that all humans have a right to freedom. By accepting such freedom, we allow room for a diversity of tactics, a diversity of views, a diversity of ways in which to live and love. Such is an acceptance I can truly embrace.

Desperate Times, Desperate Treatments

In Chronic Pain, Class Politics, Crip Politics / Disability Politics, Health Justice, Identity Politics, Multiple Sclerosis, Neuroscience on November 18, 2012 at 11:30 PM
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Pills, pills, and more pills…

A web of issues has kept me from writing in the past few weeks, and the entire experience has had me think deeply about how seemingly intractable concerns self-perpetuate.

I’ve been dealing with chronic fatigue and pain for quite some time now, but a vicious circle has solidified that makes my health issues seem substantially worse: irregular hours at work, a lack of family support or community, an overall lack of inspiration…

I’ve also been dealing with intractable, difficult-to-treat neuropathic pain that results from damaged nerve cells.

Typically, pain is associated with signals sent along specialized nerve fibers—nociceptors—whenever you experience something like a stubbed toe. In the case of neuropathic pain, however, it can be the very nerve fibers that communicate pain to our central nervous system that are themselves damaged. The pain signaling process that typically alerts us to harmful stimuli is suddenly miscommunicating, with nociceptors firing in the presence of usually non-painful stimuli (allodynia) or firing spontaneously or at higher intensity (hyperalgesia).

In my case, the damage wrought by successive MS-related relapses last fall created multiple lesions in my brain and spinal cord, with many localized in the midbrain (the part of the brain that controls autonomic nervous activity, such as breathing, temperature regulation, and motor coordination).

My last MRI indicated at least twenty different lesions—area of the brain where demyelination led to disruption in nerve signaling, possibly even the destruction of entire neurons.

My symptoms include abnormal sensations (dysesthesias), like throbbing or “electric shocks” in my hands or lower back. However, the issue that’s been disrupting my life the most has been the never-ending throbbing at the back of my head—precisely in the midbrain region, where the cervical spinal cord meets with the brain.

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The pons and the corpus collosum were among two areas where lesions were spotted in my most recent MRIs

That my case is emblematic of the strange symptoms MS can cause is clear: this is nothing like a migraine or typical pain that I’ve experienced before in my life.

In my case, it isn’t exactly an “acute” pain sensation either—it’s more like a dull, but heavy, throbbing that refuses to go away. Over-the-counters (like Advil, Motrin, and Aleve) have no effect.

Typically, the treatment regimen for neuropathic pain includes anti-seizure medications (like gabapentin and pregabalin) or tricyclic antidepressants (like amitriptyline and nortriptyline)—both of which I’ve already tried. The downside with these medications is that they exacerbate a symptom I was already having before the demyelination period I had last year—chronic fatigue.

Having learned more about the pharmaceutical industry, the history of the medical establishment in the United States, and the medical-industrial complex (MIC) overall, I find the idea of depending on many pharmaceuticals for my daily living to be revolting.

Yet anyone suggesting that you can find non-pharmaceutical outlets for curing even the worst conditions (some even make this claim for terminal cancer) likely hasn’t experienced it for herself.

I was gravitated towards yoga and meditation shortly after my symptoms appeared—and yes, these practices are tremendously helpful in alleviating and managing the stress that my health condition causes. I would recommend them to anyone, and had I practiced these before my condition worsened, I likely wouldn’t be here writing about how I’m managing my neuropathic pain.

But I still find myself needing Western medicine and its drugs to get by—and trust me when I say I’ve tried getting by without it.

Among the experiments: I’ve tried changes in my diet (becoming a pescatarian, then a vegetarian, then a pescatarian who avoids dairy products), played with various herbs and exercise routines, tried acupuncture and homeopathy, and yet…

There, the throbbing remains like a stubborn, unwanted guest in your bedroom. This is the world of neuropathic pain: even the best treatments only have a chance of efficacy.

I remember coming across one study that suggested that even our best pharmaceuticals have around a 30% success rate for even partial relief, and there’s even less evidence for ‘alternative’ treatments like acupuncture and meditation (though this, of course, is due to the MIC’s disinterest in free or low-cost, but potentially effective, treatments).

Like many people who are desperate about pain relief, I feel like I’ve tried it all…

Yet, there’s always something new out there you can try, some new treatment, or combination of drugs, or a new doctor or paradigm that might resolve it all. There’s always the possibility that if you give this treatment just a little more time it might actually work. The mottos seem to be: try this, try it with this other thing, try giving it more time, try, try, try…

People with chronic pain can be especially susceptible to snake oil salesmen precisely because we’ve already been let down by our other health care providers. Like others, my path down this road of chronic pain has been filled with moments of despair, desperation, loneliness, and incredible confusion.

My latest attempts are exemplary of the sort of things that people with confusing and difficult-to-treat ailments do. In addition to the Lyrica (pregabalin) and Klonopin I take every night (which only blunts the pain enough to let me sleep), I’ve been having as many as two acupuncture treatments a week and taking what must seem like an alchemist’s prescription: Valerian, Lion’s Mane Mushroom, Milk Thistle, and other herbs alongside Vitamin D and Omega 3 supplements (all taken inconsistently and depending on the day).

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My new portable TENS machine

Recently, I bought myself a transcutaneous electrical nerve stimulation (TENS) machine, which works (more or less) by sticking electrodes near the site of pain and transmitting electrical currents.

It’s inconclusive science, but the idea is based on what is popularly recognized in neuroscience as the gate control theory of pain (by Melzack & Wall, 1965). Roughly put, the electrical currents from the TENS machine send signals to sensory neurons that then inhibit the activity of pain-signaling nociceptors. I’ve only tried it a few times thus far, but I’ve yet to notice anything substantial.

However, I’ve noticed that my particular, subtler pain doesn’t display immediate relief to anything, even the pharmaceuticals—so I’m left wondering if it’s just a matter of time.

What was possibly my most desperate attempt to find relief happened last weekend, when I made a long trip into central New Jersey to meet with an energy healer. (To be fair, although it’s clear that his machine is meant to deal with energy healing, he never promoted himself as such.)

I’ve kept my heart and mind open to various possibilities (having gone beyond my neuroscientific training in college to reading about homeopathy, Traditional Chinese Medicine, and Ayurvedic medicine), but this was by far the most extreme in challenging the Western allopathic model.

I learned about the healer through my acupuncturist, who claimed to have gotten good results from working with him; I decided that, given how stubborn my head-throbbing was (even to consistent acupuncture), it was at least worth a shot.

When I went to see the energy healer I was caught a bit off-guard by how small the ‘body scan’ machine was. Perhaps I was expecting something straight out of a science-fiction movie, but the machine seemed too compact to be able to reveal issues in my energy channels.

However, as he explained to me over the course of the few hours we had together, the body scan was created by scientists in Germany who worked off the science of meridian points and energy channels (the basis of acupuncture) to create a device that works the way a lie detector machine does—using galvanic skin responses.

This portable ‘body scan’ had electrical detectors that were strapped around my index fingers, my forehead, and my left calf—which, the healer explained, would measure my body up against thousands of different potential toxins to find the source of any energy imbalances.

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Image of the Spectravision Body Scanner the ‘energy healer’ used. I wonder how much one of these is worth.

We spent a good deal of time talking about numerology and astrology (for which I admit much ignorance) before the machine finished its scan. What showed up on the electronic screen was a list of toxins and issues correlated with the most imbalance—and much of it surprised me. Inexplicably, ‘gamma rays’ came at the top of the list. Right below it was ‘Headaches’ and some slots below that was “Alkaline Phosphatase” (an enzyme particularly concentrated in the liver).

The healer then asked me to hold onto a copper cylinder while he asked me a couple of questions (or gave me a number of prompts) that would measure my body’s sensitivity to the correlating issue. For instance, he would ask me what my name was, and the machine would be able to detect whether or not the response I gave was true. He then asked me a number of times to think about my health concerns and anxieties, and we found that the biggest ‘triggers’ were ‘anxiety’ and ‘worrying.’ Not much of a surprise there.

But the body scan also listed ‘cervicogenic pain’ at the top of another list relating to bodily issues, and listed ‘passion’ at the top of a list relating to emotions. It just seemed to hit the nail on the head there as far as accuracy. Was this for real? Was I dreaming this? I still can’t say for sure what I think—or how I feel—but I went along with his prompts as we continued to “solve” the mystery behind my ailments. What was possibly the most surprising component of that session came when we tried to find the health condition that was troubling me.

The body scan rejected ‘multiple sclerosis’ as an accurate diagnosis. Instead, it gave me this lesser-known autoimmune disease, ‘primary biliary cirrhosis,’ as the veritable diagnosis. (I later read about it and learned it was a condition marked by destruction of the bile ducts within the liver. That a liver enzyme and a liver condition appeared twice in this machine’s scan gave me incredible pause.)

I remember going home that night utterly confused. From the healer’s perspective, what I needed to do (in accordance with my astrological signs) was follow my heart, follow my passions and my instincts, and learn to love myself. That was the prescription.

How the hell would I go back home, wanting to manage my chronic pain, with information I already knew?

Any number of books I’ve read would have given me the same advice. I know, for instance, that meditating frequently will help me deal with stress more effectively. But meditation is at least a practice I can manage. Following my heart and learning to love myself? That’s a little too amorphous for me to work with.

What boggles my mind the most is the fact that I still can’t refute the efficacy of anything I’ve tried.

Maybe, just maybe, the healer was right and the ‘cure’ is to ‘follow my heart’ (whatever that means). Maybe, just maybe, the solution is to quit my job and do as much yoga and meditation as possible. Maybe shocking my brain every day will help, and maybe taking more of the pregabalin in conjunction with the other treatments will work.

Needless to say, it’s hard to eliminate anything from the list of possible treatments, and I’m left managing my day to day in a nebulous world of ‘maybes.’

Is this the best I’m going to get? Is there yet another solution lurking in the corners I haven’t tried? Do I keep looking or work on acceptance—or both? Perhaps this is just the way it’s going to be—at least for now.

Fighting Chronic Pain and Autoimmunity, Fighting for Our Liberation

In Chronic Pain, Life with Chronic Illness, Multiple Sclerosis, The Revolution on September 18, 2012 at 9:17 PM

Over the past year, a sudden and unexpected worsening of a pre-existing medical condition has caused me to re-evaluate my strengths and limits as an organizer committed to social liberation.

Part of living with condition like Multiple Sclerosis (MS) has meant learning to adjust to the changes in my body: there is now a mandatory minimum number of hours of sleep I must have, a mandatory maximum number of hours I can work in a day, and there are diets and exercises that may improve my long-term health outcomes.

That said, my experience has shown me there is considerable confusion around chronic health conditions–and even more so, around chronic pain.

There might be many reasons for this, but mere visibility plays a key role: people can’t understand what they can’t see. After all, you can see someone’s crying, screaming, yelling, and various expressions of pain, but not the pain itself.

But I also like to think of pain broadly, encompassing the emotional, physical, psychological, spiritual. This understanding of pain also shapes my understanding of my own struggles, for as a queer activist of color with a chronic health condition, I know that I’m fighting pain on multiple fronts: the physiological pain stimulated—in my case—by irreparable nerve damage; the psycho-emotional pain of years of individualized social ostracism and alienation; and the transgenerational pain of centuries of racism-fueled colonization and genocide against my family and ancestors.

Explaining all of this in a manner that elicits compassion and empathy is a gargantuan feat: at best, I am left with an annoying task of trying to find precisely worded allegories and metaphors to describe a pain that I feel on a constant basis.

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As the World Burst Aflame

For me, one of the most harrowing examples of how I struggled with my chronic condition came last September, with the explosion (of all things) of Occupy Wall Street.

To be physically distant from a movement and consequentially feeling out of the loop is one thing. But to be living and working so near one of the most impactful movements in recent memory and still being unable to be physically present made me feel hopeless and aggravated.

Geographic distance was not a barrier in this case—but for my body, hardly sustaining the energy to make the commute to work and back—and in the worst occasions, being slogged around from one ER to the next—Wall Street may just as well have been at the other end of the planet.

My problems started one morning in September last year, waking up unable to feel the left side of my body while the world around my bed spun vigorously.

I felt like I was injured at sea, throttling about in a flimsy boat during a torturous typhoon. Everything was spinning so rapidly that I couldn’t read the front page of a newspaper if I tried, or see whether my father’s expression was a smile or a scowl. Quite literally, from one day to the next, my body had unleashed a storm that I’ve yet to recover from—and probably will never fully recover from.

I was diagnosed with MS four years ago, after a sudden, inexplicable blindness in my left eye (optic neuritis). I regained my eyesight within months, and although I experienced certain MS-related symptoms while finishing my college years, I was virtually asymptomatic for three years.

As many know, MS is a chronic, neurodegenerative condition that often first rears its ugly head in young adults (ages 20 to 40), altering life paths in unexpected ways. The embodied experience of MS varies from person to person: as remarkably complex as the nervous system is, individualized manifestations of the conditions are just unpredictable.

Although I was not problem-free since I was first diagnosed, I can say that I was generally satisfied with my state of health as I finished college and entered the workforce. Then swiftly, with little support and preparation, I started to go through a wave of relapses.

The extreme vertigo I felt in September was only the beginning of my immune system’s attack on my nervous system–one that would re-shape the way I experienced the world. I had a constant burning sensation at the back of my neck. I was experiencing a mental fogginess that made getting through the work day a nightmare. Some days, an all-body fatigue would overwhelm me, forcing me into a sleep coma the moment I snagged a seat on the subway.

Worst of all were the hard-to-describe symptoms—the symptoms that simply nagged me all day, but seemed too strange to be real, like the buzzing sensations that ran through my abdomen and thighs, the periodic numbness and weakness in a leg or finger, or the dreaded feeling of being “squeezed” at the head. (I later learned that a term, “dysesthesia,” is used to refer to these hard-to-describe sensations.) Needless to say, these were all uncomfortable sensations that made it difficult to make it through otherwise simple life tasks.

Like a brush fire, the changes that began in my body started happening suddenly, unexpectedly, and with awe-inspiring speed. And it was that same sort of storm-like celerity that shaped much of what was happening in and around me, inside my body as much as the heart of the city, between September 2011 and January 2012. The question for me was: what initiated the spark? And why?

For better or for worse, for its shortcomings and its strengths, OWS had a unprecedented impact on my city, suddenly transforming downtown Manhattan–to say nothing of Wall St!–into a hub of alternate world-making. Being more than just an encampment, it was, at its best (and for all its shortcomings) also a reflection of a new possibility–a world simmering with energy, confusion, creativity, frustration, and optimism at once.

But as much as the movement meant—for some—a connecting across class, race, and gender lines for the creation of revolutionary community, my family wouldn’t be a part of any of this.

That’s because my older brother, who spent most of his life battling a crippling, painful rare medical condition of his own, was on his death bed. My parents cried, yelled, and appealed to the supernatural as I prayed that my body would hold its ground. There’s no question for me that the stress likely ignited my flare ups, igniting my body’s inflammatory response and quickly driving it into a tailspin I couldn’t control.

It was clear that a burden my family carried for decades was now igniting something in my body. I even prayed that I would at least make it to my brother’s funeral.

I recall one night watching the news in a room at my brother’s hospice.

I remember him saying to me, “With everything that’s happening in this world, it’s probably good that I’m leaving it.”

He was right about the whirlwind changes: between the Arab Spring and May Day 2012, it felt–for those of us paying attention–as if the world were catching on fire. But so were my nerves. And it might have been limited to my own social circles, but everything seemed and felt urgent. Everything—from our bodies to the electronic media to capitalism to the global biosphere—seemed frail enough that it could break apart in months or days.

More importantly, however, were the questions that were newly ignited in my consciousness about spirituality and mortality and the meaning of being human. Understood alongside everything happening locally and globally, I also saw it all in relation to a larger, more urgent question about what it means to truly live in the moment. The importance of the ever-changing, ever-precarious now.

In a way, although my body felt like an urn full of ashes, I felt spiritually reignited into fighting for what truly mattered.

Fighting for What Matters

An otherwise relatively controlled, asymptomatic MS for three years went completely haywire in a matter of three months (September through November).

And only after several disheartening attempts of dealing with doctors, nurses, hospital administrators and my health insurance that I was able to get the medication I needed to tame this beast.

I now receive a monthly infusion, and several months after the unexpected set of relapses, the condition has supposedly stabilized. However, it created irreparable damage to my central nervous system that has transformed my day-to-day life.

Chronic headaches and fatigue are no longer minor nuisances that I can fight off with a cup of coffee or aspirin. These days, I wake up and fall asleep with a constant throbbing at the back of my head, and under conditions of high stress, humidity, or exercise, the throbbing persists at a faster rate, spreading to my upper back and ears.

The medication I’ve been taking for the headaches have been superficially helpful, at best, making it tolerable to get through the day.  However, the same medicine also worsens my almost-equally crippling fatigue requires its own drug treatment, meaning that I’m often playing hop-scotch with potent pharmaceuticals day and night.

What has been among the most harrowing of my experiences has been the ability to relay what I’m dealing with to those close to me, and has been one of the most puzzling identity-related experiences of my life.

As a queer Latinx of urban, working-class origins, having conversations about race, gender, class, and sexuality have been a part of my adult life for quite a while, and although I don’t think anyone can be an expert at these things, I was at least somewhat familiar with the territory of conversation.

These days, whenever I started bringing up my health issues at meetings or other social gatherings, I sensed a mix of well-intentioned concerns and incredible confusion.

This has all led me into intense questions about privilege and intersectionality, particularly as it relates to illness and disability. On one hand, I have some privileges relative to other individuals with chronic, degenerative conditions: I am young, mobile, and not obviously sick as far as appearances are concerned. On the other, the invisibility and unpredictability of my symptoms created issues in terms of others’ understanding.

How do I explain the sudden onset of mental fog or crushing fatigue one moment, or a sudden ebb of symptoms the next? These are difficult questions to tackle if you are someone who has been committed to community organizing for some time, working on campaigns, facilitating meetings, knocking on doors, and juggling various other life (non-activism-related) demands.

What truly made me feel disabled was being unable to see my brother in the hospice program where he was sent, or to be present at the general assemblies happening just miles away. I felt the burn most strongly in being absent—emotionally, mentally, spiritually—from those spaces where things seemed to matter.

To Have a Body and a Voice

It’s been several months later and my MS is seemingly under control—though I continue to live my day-to-day with chronic pain and fatigue. Today, I experience activities that matter with a new level of gratitude. I am grateful to be able to be here, typing this, reflecting on issues of carnal importance (for what could be more important than the fight for one’s life and freedom?).

I’ve also made decisions that reflect the lessons I’ve learned in the past year. Though I may live with a limited reserve of energy, I’ve chosen to spend as much of it as possible doing what I think will enhance my spiritual and intellectual growth, as well as doing the work of fighting for the liberation of my communities.

That said, my struggles are constant and run deep; I share them with the understanding that I have privileges many others in similar situations do not.

Even among us revolutionaries who talk about capitalism, ecocide, and heteropatriachy, we’re often mute about the sort of capital that Marx did not always discuss—the love and support of friends, family, and colleagues; the ability to build community; the ability to glide through life not bumping into as many obstacles as others.

In bringing up my issues with MS, my family, social justice organizing, and even the metaphysical questions about what it means to be human, I’m also trying to think through their inter-relationship.

For one thing, a truly intersectional understanding of social justice would need to include disability justice. Full stop. I also think the work for social liberation must necessarily acknowledge a common humanity as well as the social realities that make our lives painfully different.

I also write about voice and privilege because a newfound recognition of my humanity has made me fear complicity through silence.

As we continue to awaken to the harsh realities that mass silence has created in the form of our prisons, military and medical industrial complexes, and food-warping industries, I’ve also come to realize (with my brother’s help) that I’m of no use hiding in a library corner or computer desk if that is all I do. Meaning, in other words: we need to find a way to fight from our positions, wherever that is, and whatever form it takes.

There’s an online meme that’s become popular as of late that has become branded in my brain. “I always wondered why somebody didn’t do something about that. Then I realized I am somebody.”

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This message is simple and clear.

Confronting the death of a loved one, dealing with chronic pain, and being part of a social movement provided me a crucial perspective on exactly how to be someone. Admittedly, it can be frightening to give up our habits, comforts, and attachments–to face the ugliness head on in an attempt to change it. On the other hand, given everything that we could potentially lose over time if we don’t reverse ongoing wars, destruction, and violence, what is there left to lose?

After all, whose lives and freedoms are we fighting for?

Kristin Richardson Jordan

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