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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.

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When Things Flare Up Again

In Crip Politics / Disability Politics, Identity Politics, Life with Chronic Illness, Multiple Sclerosis on June 8, 2013 at 10:07 PM

As can happen with individuals with chronic pain, I withdrew from much of the world in the past month.

The combination of sun, psychic stress, and bodily weakness kept me home, trapped in a state of hopelessness and confusion.

In anguish, I wondered, What was happening to me? The enigma of my condition was accentuated by the fact that I’ve recently quit my job and therefore had no work-related stress. In fact, I had saved up enough money precisely because I didn’t want to have financial worries. And the spring weather should have been an incentive, not a deterrent, in me spending time outdoors.

It turns out that my MS, always unpredictable, resurfaced in a striking way. I was having another flare-up in spite of all my best efforts to take care of myself.

What shocked me was not the fact that I was having a flare-up (which I’ve learned to accept as inevitable and unpredictable), but the fact that my disciplined dieting, exercise, and meditation were not enough to reverse pernicious autoimmunity.

When I first felt the flow of another dreaded relapse, I began downing as many green shakes (i.e. juices made of leafy green vegetables and fruits high in antioxidants) as possible.

I continued, and accelerated, my daily consumption of anti-inflammatory foods and herbs (e.g. fatty fish, nuts, flax seeds, turmeric, and garlic). I exercised as best as I could in the face of chronic pain. And I read up on, and watched countless films on, food justice and the evils of modern agribusiness and factory farming.

I thought I was doing all the “right” things.

Then things started to quickly deteriorate some more. I found myself getting incredibly weak and easily fatigued, to the point of needing support from my family in such basic things as cooking and doing laundry.

Tingling sensations and vibrations spread throughout my entire body. And on days it rained—which were many, since it was a particularly rainy May in New York City—I was particularly incapable of usual functioning.

So for many days I was sofa-bound, sprawled on beige leather as I shamelessly watched hour after hour of television programming on Netflix. Whenever possible, I watched documentaries as these at least felt like a “productive” use of TV-watching hours that resulted in learning (note the internalized capitalist rhetoric implicit in this thinking). I was even able to read books about yoga and chronic pain while sitting back on a recliner.

Yes, all of these things made me feel like I could be moving in the right direction. When the green ‘juicing’ didn’t work, I decided to try harder.

I tried juice fasting. I eliminated all meats from my diet, and substituted vigorous, moderate-intensity exercise with light yogic asanas and stretching. People can judge me for many things, but no one could deny that I was really trying.

Feet Neuropathy

A pharmaceutical ad for a drug meant to treat chronic neuropathy, or pain resulting from nerve damage.

But even the best attempts to assert control can be met with demise, as if the Universe were scornfully laughing at my mortal hubris for thinking otherwise. It was a Sunday in late May. It began, as usual, with a slow start because the painkilling medications I need to in order to fall asleep also have a tendency to keep me sedated.

And things seemed like they would go their usual “calmly perturbing” route until it started to thunder in the afternoon, at which point I could feel the world distancing itself from me. Every movement started to feel like a Sisyphean feat. The kitchen, and food, may as well have been an ocean away. I couldn’t believe it. I was drowning.

When I started to feel the uncomfortable, paresthetic vibrations along my torso, with accompanying burning pains in my feet, I realized that this wasn’t going to go away through my efforts alone. I asked my father to drive me to the hospital (one that isn’t the closer, shittier hospital by my house).

I already knew what to do. I spent more time educating the nurses and residents than I was accustomed to, but it was all alright as long as they did what I needed them to do.

I got my infusion of Solu-Medrol (an anti-inflammatory steroid that is a typical treatment for an MS flare-up) around midnight, which meant that I would not be sleeping any time soon. But at least the worst was over. Within a few hours I felt as good as new.

One of my realizations these past few weeks has been the reality that we don’t have as much control over our lives as we think we do. Yes, it’s one of those aphorisms you might read in a self-help book somewhere in Barnes & Noble, but it’s undeniable.

We just have an illusion of control mediated by economic stability, reasonably good health, and interconnected systems of social organization (modes of transportation, electricity, commercial venues, etc.). When one of these components fails, however, everything can fall apart like a cascade of tumbling dominoes.

We sometimes acknowledge this in moments of crisis, or in thinking about what would happen if that next paycheck didn’t come through. And sometimes things can rebound (like after a recession, or a new job), or they can be irreversibly changed (like in traumatic injury or death). It’s the latter that we try to ignore, always hoping for a rebound or a glimmer of former regularity.

I also realized that I was beholden to a logic that many with disabling conditions are often swayed by, which is that this all happened because I did something wrong.

Whether it was that I wasn’t eating enough green leafy vegetable, or spending too much time in contaminated environments, or simply “allowing” myself to get so stressed out, the locus of blame was largely (if not explicitly) on myself.

Yes, call it some form of internalized ableism. The fact is, many people (including those well-versed in identity politics and systems of oppression) harbor attitudes that correlate “good” circumstances with “good” behavior, and “bad” circumstances with “bad” behavior. Such correlation is, in many ways, at the root of the meritocratic myth in competitive capitalism, or the age-old dogmas of organized religions.

It is so pervasive in our thinking that the matter-of-factness of it all leads many to think it is simply a matter of causality, not realizing that the qualifications of “good” and “bad” are dictated by societal norms.

 

I didn’t realize the extent of this judgment until I started to examine my thinking. After all, I came to the conclusion that eating “green” was worth my time for a reason.

And though I’ve long believed that structural forces account for a sizeable portion of what accounts for life circumstances, I found myself really wondering why I opted to change my behavior following my last set of relapses (whatever their cause), instead of merely accepting the fact that shit has happened that I could do little about.

And this is not anything unique. Even the educated among us opt for crisis-prevention strategies like buying life insurance, avoiding toxic environments, exercising, and eating organic foods in the belief that these activities will accomplish something that is ultimately beneficial. That they are “good.” If nothing else, in the absence of prophetic information, they all provide a peace of mind.

Their goodness, however, implies that other things are “bad”—an implication that rises to explicit awareness when shit hits the fan in a situation like mine. There is nothing like illness to make you see what is really there.

Of course, my efforts through behavioral modification came about from a desire to regain a control I felt betrayed when my “alien” body was having symptoms. None of this is to say that efforts at self-care are worthless, but to understand the underlying reasoning for them.

In my case, I had hoped that things could improve through careful eating. I still do. But hope does not translate into knowledge, and with MS, it’s hard to foretell much of anything.

Even grappling with the question of whether or not to apply to grad school this year, I’ve learned just how completely at a loss I am when it comes to making a decision that could affect me five to eight years down the line.

I honestly don’t know where I’ll be or what I’ll be physically and mentally able to do. Not a day goes by where I don’t wonder about how I’ll survive the pain, not to mention getting through several years.

This jarring instability has humbled me, but it has also awoken me to my attachments to material objects and life circumstances.

The flare-up didn’t make me realize all this. Meditation did. And what I’ve come to appreciate is just how attached I’ve been to certain ideas of who I am in the world.

Hopes and dreams still dot the landscape of my mind, as they should, but I choose to be as aware of the processes that give rise to them as possible.

Such is the mindful awareness that I strive for.

Cleaning out the Closet: Thoughts at the End of a Year

In Chronic Pain, Crip Politics / Disability Politics, Identity Politics, Life with Chronic Illness, Philosophical Musings on December 31, 2012 at 7:04 PM

Rusted silver keys to locks unknown.

Endless black wires and cords to equipment that no longer exist. Several black, gray, and beige jean jackets folded haphazardly in a large brown box.

Impossible stacks of unopened letters, some trite credit offers, others with peremptory statements like “Immediate Response Needed” and “URGENT.”

All of these are items my brother left, making me the unexpected inheritor of many useless objects. And I was finally able to organize them. This past week, I finally finished a task that was a year in the making: cleaning out my brother’s closet.

Fear and fatigue had kept me from accomplishing this task sooner. It was much easier to keep the closet doors shut and ignore what things I would see, and feel, upon opening them.

While I had created a space of my own in this basement apartment, this particular closet I left untouched…until this past week. Yes, there is a sense of resolution, but the questions surrounding his fate, and mine, will always reverberate against the walls.

It was last year—the week following my brother’s death—that I started the process of cleaning out the basement.

I was definitely overcome by the seeming impossibility of the task: sifting through items that were a reflection of my brother’s quarter-century existence, determining what would survive (the furniture; the movie and video game sets my younger brother coveted; the fiction books that intrigued me) and what would face the black death of a thrash heap (the useless, nearly interminable wiring; the empty DVD box cases; the notebooks scrawled with mathematical equations from now-useless college courses).

Those were the easy decisions. But what to make of the boxes and boxes of brand-name clothing (a logo-galore of Guess©, Armani Exchange©, Old Navy©, Levi’s©, Rocawear©)? What to make of the now-outdated technology he once prized—bulky digital cameras, digital planners, digital everything? What to make of the billiards sticks and the one…two…three…four different air ventilators? What to make of the off-white dirty sheets with the irremovable stench of bed-ridden sweat? What to make of the metal cane with the soft Hyaplon grip? The PortaBook© Notebook stand? The DiscoveryKids© Animated Marine Lamp? The McKesson© powdered latex gloves?

That one person could accumulate and hoard so much stuff was breath-taking. I’m not ashamed to admit that I felt overwhelmed, and a bit despondent. Actually, it was downright depressing. The objects that filled the various closets, drawers, shelves, and various nooks and crannies were all things that entered and exited through his life in some way or another.

Some were clearly transient—like the DVDs he played once, only to stash away in some corner I would later have to inspect, prying their utility with my own eyes. Others were clearly indispensable parts of his sickly life: the Samsung© flat-screen HD TV, the Asus© desktop, the Pfizer© meds. There was also the beige leather recliner where I always found him sitting on—nay, resting on, at a 60 degree angle, since his deformed spine could no longer support his body weight when sitting up. It was his relaxed posture, and it is how I most remember him: slouched on his recliner, staring at a flat-screen TV.

There is no way my brother could have collected so many things without money—and quite a lot of it. When my brother was still in middle school, in the late ‘90s, my parents sued Lutheran Medical Hospital for an excruciating misdiagnosis (they said meningitis) that prevented him from receiving the proper treatment for his later-diagnosed histiocytosis.

Years later, when he turned 18, he finally had access to what was rightfully his due: a quarter million dollars. One can imagine what it must be like to be teenager with an immediate access to so much cash. A quantity most people on this planet will never possess, most definitely not at once.

And for a kid from a working-class immigrant family, this was nothing less than hitting the lotto. With the money came a sense of power, a sense of being able to achieve the American dream that we see repeatedly in the media. At last, success through wealth.

As a teenager, this money was the conduit to a dream world he long harbored, after years of let-downs and humiliations.

By the age of 18 he had overcome the brutality of chemotherapy, forced home-schooling, and years of standing at the sidelines while his peers played basketball, ran a mile, participated in Phys Ed. Although I was too consumed with my own issues at the time to see it, I later developed a clear picture of what he used his money for: wooing a girlfriend with presents, buying a hardly-used car, buying an almost-limitless number of video games (one of his favorite hobbies).

Perhaps his wisest investment was helping with the down-payment of the house in which my family currently lives in. Back then, I was a passenger in a car my brother and parents were driving. Their vision of the American dream. A little house with an iron fence and a backyard. In some liminal urbanscape between the inner-city and the suburbs. A house that was blocks from the subway, a 45-minute ride from downtown Manhattan.

And so it was: with my brother’s help, using the endowment he received from medical malpractice, we were able to “escape” a working-class immigrant neighborhood in Brooklyn and become homeowners in a mixed-income neighborhood in far-out section of Queens. In hindsight, there are some things that I think we all failed to see. We were so caught up in the allure of this experience—this sense of accomplishment, this sense of moving forward—that we failed to anticipate the impermanence of our materially-based happiness. After the paint had dried, the furniture moved in, the marble counters installed, we found to our chagrin that the house required more fixing than we anticipated: leaking pipes, an old boiler, an impossibly difficult basement. That year, my brother’s car was hijacked twice for its prized parts. And the neighborhood we were living in had experienced extensive white flight and depressing property values, creating a still-ongoing tension between the remaining, settled whites (mostly Italian, many living in the more decorated houses in the southern portion of the neighborhood) and the recent arrivals (immigrant families hailing from countries like Guyana, India, Puerto Rico, and Peru). In this leap “forward” we also moved so far away from our respective schools, workplaces, and old friends that we were spending countless hours simply commuting.

My brother’s condition also worsened over time. The pain from his deformed spine was finally forcing him to quit school, and he finally agreed to a spinal fusion surgery—a surgery I later learned has inconclusive signs of success, with many patients experiencing complications , needing re-operation, falling into permanent disability.1, 23 None of us knew this. We just held hope. The surgery was done in 2007, but it was followed by ruthless procession of additional surgeries, hospitalizations, and treatments.

I was absent for much of this: I was studying away in Rhode Island, where I could conveniently ignore the problems that festered at home. I was too absorbed by own unhappiness to really take on anyone else’s.

While I tried to overcome my psychic pain by consuming myself in my studies, part-time jobs and volunteer gigs, hoping to overcome the pain of isolation through activism, my brother consumed himself in the realms of fantasy: video games, movies, TV shows.

While I tried to run head-first into my reality, trying (if vainly) to change it, my brother tried to avoid it at all costs through digital displays of worlds where indigestible problems were nonexistent.

Worlds that satirized family problems (think of animated shows like The Simpsons and Family Guy), focused on ones that could be turned comedic (movies with plots about chasing “the girl” or dealing with some pesky sibling), or were too unrealistic to touch one to the core (think zombies, warriors, gods, heroes and aliens in our newest supply of sci-fi movies and video games). After learning about the countless efforts my brother made to improve his health, to survive in a world that seemed isolated, cruel, and unjust,

I can’t blame him for using his available resources—his money—to purchase endless distractions and escape routes. But his life in these last years offers an invaluable lesson about the role of material goods in our lives. Even at their best, they only brought him a brief sort of happiness, a brief escape from the present, a turning away from social realities. Although it is oft-noted cliché, something we often nod our heads to before we proceed to worry about our financial problems, relationships, and work, the material objects in our lives do not confer happiness.

From a Buddhist perspective, it is our mind’s interaction with the world that can make us happy, or make us suffer—but the objects in and of themselves do nothing.

When my brother died the objects remained. Hard and lifeless, they were nevertheless reminders of a life long lived.

And they only possessed a reality through others’ perceptions. Sick of the materialism of an affluent society such as ours, one that operates on a deliberate oppression and displacement of the world’s poor, I was more than eager to give it all away, either through donations or ecologically-friendly removal.

My younger brother coveted the Xbox 360, Playstation 3, and large stacks of DVDs. My mother insisted on going through the objects I tossed into thrash bags to reclaim their supposed worthiness and relevance, only later to realize that there were too many things to reclaim.

It would have been pointless to keep so many things that would hardly ever be used again. A few days after that, when I was finishing up what seemed to be an interminable project of cleaning out the basement, that my mother finally conceded—with a sigh of impenetrable grief—that my brother had wasted so much of his money on material vanities. It’s like he was trying to fill the emptiness in his heart, my mother said in her soft Spanish. Her chilling words have never left me, for they signified the coldest truth I have ever heard. The resigned despair in her voice was almost unbearable—much worse than the months of wailing that preceded and followed his death. At week’s end, several large garbage bags littered the sidewalk in front of our house.

For me, this was all a new form of social awakening. I had become “socially conscious” and “politicized” before.

During my last year of high school, I had been agitated by my work with an organization of queer youth of color, and I became excited about the prospect of future activism. Midway through college, I was agitated again—except this time I was filled with anger. I was filled with animosity against the rich, white kids I was surrounded by in school, against decadent late-night indulgences and convenient ignorance of university staff, against the rhetoric of leftist radicalism that never left the walls of the ivory tower.

During this time, I was also diagnosed with multiple sclerosis—what I felt to be a final insult after years of feeling isolated and excluded from dominant society. All throughout these experiences, I felt like an activist, even when I least wanted to be. It had become an integral part of my identity. It was all about how I saw the world around me.

But my brother’s death brought about a new kind of awakening, one that was tinged with a gray sadness and a sense of death-is-imminent urgency. That my health started to deteriorate as my brother was dying was more than just a wake-up call—it was an emergency drill, a realization that I needed to see what my brother finally saw. Yes, there is sadness all around us.

But there is also greatness all around us. Our lives can be ephemeral and tragic, but also long and immensely gratifying. These may seem like platitudes, but I think there is something quite profound in these polarities.

One lesson that I’ve learned the hard way: if we continue to zoom through life with our minds locked onto the future, or dwelling grudgingly on the past, we’ll fail to see the beauty of things in the present. It all relies on our perceptions.

Trying to reconcile my leftist political background with my new-found appreciation of Buddhist philosophy, I’ve come to realize that it is all a matter of perceptions. Our mind interacting with the world. We react based on what we see—or at least, what we think we see. North American conservatives may see a destruction of traditional ways of living that they see as superior as spelling doom.

Liberals may see a diverse multiculturalism and the expansion of voting rights as signs of progress. An affluent person, blindly bound to his wealth, will likely see an increased percentage in taxes as unjust. And so it goes on and on.

Our perceptions of our social reality shape how we respond to the world, to one another, how we treat the beggar on the street, the European tourist asking for directions, the activist shouting against war. It is always a worthwhile question to ask ourselves why we hold the beliefs we do, whether we see the world as hopeless or full of possibilities.

Cleaning out my brother’s closet—over a full year later—made me think deeply about what I was really seeing. The anti-capitalist in me saw a hoard of brand-name clothing, digital hardware, and corporate logos that made me feel both angry and empty. It was the same unsettling feeling I’ve experienced many times before, a feeling of fighting a war that cannot be won.

Of being hurled down by the gods after reaching the mountaintop. As my pain medication kicked in, however, a subdued, neglected child surfaced. He saw these same objects with fascination—as if each told a fairy tale of dreams and desires. Tales of unresolved wishes.

I realized just how discerning my mother was in seeing through my brother’s youthful “vanities.” As I thumbed through my brother’s old but hardly-used jean jackets (which I assume he bought when he was a teenager and quite loaded), I started to wonder what he imagined when he purchased them.

Although we grew up in the same household, the same working-class and poor neighborhood (Sunset Park, Brooklyn), my brother and I grew up with different tastes.

I went through different phases in my adolescence and young adulthood (from penniless Goth to preppy gay to I-don’t-give-a-flying-fuck to whatever-I-feel-like), each phase reflective of how I understood the world and where I stood in it.

My brother, on the other hand, went to schools near our neighborhood and dressed in ways that were popular in the late 90s and early 2000s: a hip hop/urban fashion that consisted (for the male-identified) of heavy jean jackets, baseballs caps, bandanas, and gold chains. The image of “P. Diddy” Combs and his Sean John clothing line comes to mind as I picture the sort of images my brother was likely emulating, and which stands out in the two dozen jackets (!!!) he had purchased, along with countless shirts and baggy jeans.

Of course, one can easily attribute this spending spree to youthful naivety, peer pressure, or the like. But it seems equally, if not more, reasonable to trace the sources further upstream: to the incessant barrage of commercials, music videos, magazine ads, etc. that he and his peers watched, glazed over, and responded to. It was a coercion of marketing impacting a community: either buy the commodities that are given cultural valence in your world, or react by rejecting.

There is a story that I read recently has gotten me to think about the role of media imagery and materialism in our world. Actually, it was an account given by a Buddhist activist and linguist, Helena Norberg-Hodge, who documented the changes she saw in Ladakh—a region in northwestern India that was isolated from Western influence up until the 1970s4. As the account goes, the Ladakhis lived, for hundreds of years, as Buddhist farmers. As Buddhist monk Jack Kornfiel relates: “They lived simply, with rainfall enough to grow their crops and time to tend to their temples and follow the sacred rhythm of their year.”5 In the early years of the cultural invasion, they told visiting Westerners about how rich their lives were, how their basic needs were always met. Over the course of twenty years, however, Norberg-Hodge noticed startling changes. The capital of Leh transformed from a rural community of 5,000 inhabitants to a congested, urban sprawl. And after years of exposure to television, music, and fashion from India and the U.S., Ladakhis started to complain about how poor they were. As Kornfield tells it, “many Ladakhis have left their villages to live in crowded, impoverished quarters in the city, seeking the happiness promised by the modern world. There are blessings in modernization, and we can understand the villagers’ desire for running water and electric lights. But we can also recognize the costs of materialism when desire becomes out of balance.”

Desire-out-of-balance was what I saw in those jackets my brother bought. At one end, what I saw was a dream unfulfilled: a desire to look strong, healthy, popular, powerful. Whether I wanted to indulge in them or not, the images of the Sean John ads flooded my mind, showcasing a world of affluence—and black affluence at that.

Who can blame a young man from wanting to indulge such a dream? At the other end, I saw something extremely perverse and unjust: clothing stitched and hemmed by Third World women at paltry wages and substandard working conditions, then marketed to working-class youth of color in the global North and sold at substantially higher prices.

My head hurts trying to keep track of the whirlpool of insanity our modern capitalist world has wrought: the commodification, the marketing, the buying of our media, our education, our government. We don’t see all this in our everyday lives; instead, what we see are people leaving their homes, driving their cars, entering their workplace. And in the course of any given day we pass by countless ads meant to sell us something—on the subway, at the bus station, on our favorite Internet sites.

Ads intended to sprout a desire for things we don’t need. Before we realize the extent of this sensory deluge, these commodities have entered our fantasies and desires exactly as corporate headmasters wanted. And so we continue to struggle—sacrificing our livelihood at times—for those items that will bring us the lifestyle we covet. A house. A car. A flatscreen TV. Those incredible jean jackets P Diddy wears.

We put our bodies through incredible stress to achieve these things, our minds latched onto the rewards. And when the rewards finally come, we feel ecstatic. One would say happy. Until the novelty wears away and we’re left wanting more.

Such was the cycle that I saw in that heap of things my brother had bought over the years. It was as if there was something clawing inside him, a craving that was augmented by darkness. Like an addiction. Like filling an emptiness (as my mother put it) that would never go away. And isn’t this precisely what capitalism thrives on? The incessant, insatiable desire for more? (More capital, more consumption, more land, more war, more, more, more…) A system designed on quick fixes, on short-lasting highs that we then need to keep feeding to prevent a convulsion of our crack-addicted bodies.

Yet, as much as instant gratification is an assumed part of our “American culture,” it is not the commodities themselves that trouble me (and, as it is, many of the commodities are things we absolutely need for our survival). For me, the more insidious aspects of our capitalist world have nothing to do with the things themselves. It is about how capitalism digs deep into our hearts and minds, shaping our mentality about the people around us, the houses and streets, the earth and the sky.

It is about how we come to think of everything—from a vacation trip to a seashore spot, to the food we eat and the clothes we wear—as quantifiable entities. As things with a price. From there we see a system that runs off dog-eat-dog competition and notions of ‘success’ predicated on wealth and power. We then feel as if we’ve failed when we don’t achieve the sort of ‘success’ that is flaunted at us in television shows and movies: a high-paying job, a nice house and car, a spouse and children.

We live out our lives always in the future, our minds always several steps ahead. And we suffer from anguish, stress, disappointment, loneliness. And a vicious cycle begins: drowning ourselves in work, abusing drugs and alcohol, surrounding ourselves with acquaintances, entering into superficial relationships that ultimately disappoint us…

To be clear, none of this is a denunciation against work, making friends, or building relationships. In fact, these are the activities that have the potential to suffuse our lives with meaning—even contributing to a long-lasting happiness.

But there’s a significant difference between fostering genuine relationships (either with people or our work) and the run-amok bigger-is-better attitude where we try to force our lives to fit some pre-compartmentalized box we were sold on TV.

Although my trip along the dharmic road is in its infancy, I’ve already come to sense Buddhism’s deeper appreciation for self-destroying impulses. Dukkha, an ancient Pali word, is often translated as “suffering” and “stress.”

And the dukkha we experience in the chasing of dream-lives, like those we see on television, has a distinct classification in Buddhist tradition: the dukkha of conditioned states (samkhara-dukkha), a dissatisfaction based on things never measuring up to our expectations. I like to think that my brother, in his wisdom, latched onto to this concept in his final days.

Speaking like an old guru viewing children at play, he commented on the hilarious vanities of the rich he saw on television.

He also came to humbly accept his own old vanities. Certainly, the suffering he experienced from bleeding to death (dukkha of ordinary suffering) was unavoidable. But he understood, in hindsight, how much of his earlier suffering was based on expectations of a life he desired.

A desired life built on expectations mediated by his surroundings. A desired life that always made his actual one seem inferior, festering holes of loneliness and disappointment.

As I’ve noted earlier, perception is key. We saw an extreme case of capitalism-mediated perceptions in the case of Ladakh. And it goes to show that if we are able to see what is good in this world, see what is good in all of us, we can avoid feeling as if our lives are somehow deficient.

In short, we can avoid the suffering from our unhealthy desires. Likewise, although it is a moral imperative to take notice of the evils of our modern world—the destruction of the planet, endless wars, the violence against the poor—we should also take notice of our vast potential for good.

Our ability to laugh at our follies. Give a lending hand to victims of a climate disaster. Resist neoliberal alienation by coming together, sharing our resources, dispensing with the obsession of personal ownership. In emphasizing the importance of the mind in constructing our worldviews, Buddhist philosophy shows us that we can have agency in our lives. We can choose to become passive recipients to corporate conditioning, or we can choose to find those things that will bring us genuine happiness. We can find goodness in our lives in the moment. We can find goodness in simplicity.

Organizing my brother’s closet this past week, I came to realize that I had undergone an incredible change over the past year. It’s still unclear what the legacy of his life will be, but I already have a lot to be thankful for.

To say I have a new-found appreciation for life is an understatement. I breathe in a new air, see a new sky. Walk on a new earth, in a new body with new feet. Even my relationship to objects has changed. Rather than a means to an end, I try to experience them as they are. As objects.

So now, while I try to figure out what to do with those jackets, and the many other things that stayed behind, I think back to the time my brother and I spent together. To how we enjoyed each other’s company while watching a few of his movies. Or the worlds of video game fantasy he showed me on his flatscreen. Yes, we were using material things. But in those moments, it wasn’t the material objects in themselves that brought us joy. Nor were they being used as means of escape or forms of distraction.

This time, they were being used wisely, moderated by a mindfulness of life’s impermanence. A mindfulness that this moment won’t last forever. So it was best to enjoy it.

1) Deyo et al. 2004. “Spinal-Fusion Surgery—The Case for Restraint.” New England Journal of Medicine 350:722-726.

2) Smith, J.C. 2011. “Back Surgery: Too Many, Too Costly, Too Ineffective.” Dynamic Chiropractor Vol. 29, Iss. 8.

3) Nguyen et al. 2011. “Long-term outcomes of lumbar fusion among workers’ compensation subjects: a historical cohort study.” Spine 36(4): 320-31.

4) Unfortunately, given that this is an account by a “Westerner,” I have to leave discussion of the Euro-American imperial gaze for some other time.

5) From Jack Kornfield’s essay, “The Transformation of Desire into Abundance,” as found in In the Face of Fear: Buddhist Wisdom for Challenging Times (2009).

Seeing Life Through a Dying Man’s Eyes

In Chronic Pain, Life with Chronic Illness, Philosophical Musings on December 4, 2012 at 5:49 AM

My brother was never an affable, happy-go-lucky kind of guy. In fact, it was his frankness and humility that I most liked in him: he didn’t see a need for putting up pretenses, for dancing around issues that bothered him.

When we went to an uncle and aunt’s 50th wedding anniversary, he didn’t make any motions to show a false happiness. His demeanor represented what he felt: a brave, admirable struggle with chronic pain, but a willingness to appreciate life’s small pleasures in spite of it.

As he told my mom once, there is always something to enjoy: whether it be the fluttering of a pigeon, the taste of an apple, the rattling of a train. The sights, sounds, and images of the world have a beauty that is always available to us—if only we are willing to pay attention to them. Such age-old wisdom was not bad for someone who was barely twenty-six.

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During his final year, he was condemned to wearing a back and neck brace to support his fragile skeleton. He still found a way to tease, laugh, and smile.

Anthony wasn’t always so appreciative of the little things. For years, his life was consumed by imagery and fantasy, a fleeting, two-dimensional connection with the world that spun magically from scintillating pixels on a television screen. Down in his dark basement, sitting on his beige leather recliner, his interaction with the “world” was limited to the frontal plane, a one-directional visual reception of comical mishaps with the Simpson family, the Griffin family, or some other amusingly broken social unit.

While the rest of us were clocking in to our jobs or classes, my brother would go through passing seasons watching shows that put a comical spin on our social world (Late Night with Conan O’Brien, The Colbert Report), or movies that played with heart strings and stomachs.

The allure of fictional worlds also presented itself in the various video games he collected and played over the years: worlds where you could kill and car-jack with impunity, where you could slay dragons and reptilian monsters, worlds where you were incredibly fit and powerful.

That he was finding such reprieve in worlds of entertainment and fiction should be no surprise: how else to live through an interminably painful and hopeless condition than to watch endless reruns of shows where lighthearted fun could be found in unrealistic yet hilariously absurd scenarios? Shows or games where you could detach yourself from the pain and isolation of everyday reality, and pretend that your biggest concerns are of the pettiest, materialistic types?

It was a year ago today that the person who taught me the most—my one and only older brother—passed away. His death was not a surprise to me and my family. It came about through one of the worst possible ways, like a long Shakespearean death…except much less romantic.

He died from the months of blood-letting that came from years of chemo-radiation, not for cancer, but for an insidious, rare disease that reared its head in childhood. It’s called Langerhans Cell Histiocytosis (sometimes also known as Histiocytosis X; it’s definitely never a good sign when your condition has an ominous ‘X’ in it).

He suffered, for most of his short life, from something that most of us are fortunate enough to never encounter—a rare disease that stumped many of his doctors and for which very few resources exist.

His condition progressively destroyed his bones and wrecked havoc on his life as the pain from his breaking vertebrae prevented him from going to school, holding down a job, or having a modicum of a social life. Consequentially, my brother didn’t live out his youth the way many twenty-somethings do: his healthiest days were lived out in high school (though he was teased for misshapen back), and he took a break from college to seek surgical treatment that—it was hoped—would fix his the ongoing deterioration of his vertebrae (see spinal fusion surgery, a now-contested treatment).

As that “break” extended into multiple semesters, and one surgery led to another and another, his dreams and aspirations changed. At first, he wanted to start his own business. Then he wanted to just finish college. Then he just wanted to live a healthy life. Then he just wanted to live.

With every trip to a doctor, with every test and treatment, we were constantly chasing something that would never be. My parents wrestled with the possibilities of saving him until the bitter end. For all those years he spent chasing something better, he was in his basement apartment, his hopes keeping him alive.

I’d like to think that the wisdom he imparted to me and my family was due to a compression of life: he had to learn, in twenty-six years, what many three times that age may be lucky enough to learn.

In the days after his death, I was burdened with the responsibility of cleaning out the basement. It was one of the most laborious tasks of my life—and not simply because there was endless stuff that had compiled over twenty-six years of living. It was because of the emotional weight that each item, each DVD case or loose-leaf or T-shirt carried. The hopelessness was everywhere. There were just simply vast piles of crap—these material things that, at best, brought him a few hours of escapist entertainment.

Many of the things were hardly used, or probably never used. And there before me was the evidence of his condition. The pain and loneliness could be found in the many attempts to run from it: endless piles of DVDs, video games, and outdated electronic devices. The clothes that no longer fit his shrunken frame. The college books and papers that were testament of an unfulfilled dream.

The challenge of cleaning out the basement was small compared to the cross my brother bore for all of those years. In my eulogy at his wake, I made a reference to the story of Prometheus, a Titan in Greek mythology who experienced inexpressible, empyrean suffering for giving mankind the gift of fire (and inciting the wrath of Zeus).

According to myth, Prometheus was chained to a rock in the Caucasus Mountains, where he was condemned to have his liver eaten by an eagle every day for eternity. Immortality conferred no special advantage to Prometheus, whose liver regenerated every night and whose suffering continued well past that of any mortal.

My brother’s suffering at the expense of an unrelenting disease that literally contorted his bones was, to me, nothing less than Promethean in nature: although he was no god, his mortal suffering came to teach the rest of us in the family a valuable set of lessons about the ephemeral nature of life.

Much as fire is valuable for the light and heat it provides, my brother’s wisdom helped us see in the dark and grow spiritually as human beings.

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Though immortal, Prometheus still suffered as an eagle ate his liver day after day

Although there are countless stories of human resilience in the face of adversity, my brother’s story will be the one that I’ll always keep nearest my heart.

I can write endlessly about his travails and how he bore them, but what truly inspired me—and truly made me see the world anew—were the moments he showed a will to laugh. A will to smile. A will to reflect and inquire. A will to love. He showed all these things to us in spite of the incredible pain he bore.

Towards the end of his life he shared what he learned with us—that the material things that once cluttered his life were insignificant in the larger scheme of things. Implicitly, in being able to laugh through a funny movie while dying, he taught us how much we can enjoy if we open our eyes wide to life, unclouded by judgments, fears, denials, hopes. Simply being—experiencing the world through sensation without cognitive appraisal—can bring us excitement and joy.

Seeing the world through the eyes of a dying man, you become in tune again with that inner child that finds endless excitement in touch, taste, and smell. The child that finds pleasure in the smaller things, like the taste of an apple or smell of a flower—the things we’ve become conditioned to ignore or see as hindrances as we strive for some future goal. The inner capitalist kicks the inner child to the curb. Tells the child to shut up and listen.

For once, I’ve made a deliberate decision to not easily succumb to the ways we’ve been indoctrinated; I’ve vowed to listen to my brother, whose words ring truer as I make my own journey with chronic pain. In helping me see things through his eyes, he helped me decolonize my mind just a bit more, helped me come closer to that once-pristine psychic landscape uncorrupted by avarice and competition.

There’s a long way for me to go, but I’ve given up on a black-and-white notion of my destination. The road there is the destination.

My brother was the greatest teacher I’ve ever had.

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?

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