krys méndez ramírez

Posts Tagged ‘Buddhism’

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 What to make of the now-outdated technology he once prized—bulky digital cameras, digital planners, digital everything?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).

Advertisements

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.

Image

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.

Image

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.

Surviving Sandy, Tempestuous Thoughts

In Chronic Pain, Class Politics, Crip Politics / Disability Politics, Identity Politics, Multiple Sclerosis, Philosophical Musings on November 4, 2012 at 4:23 AM

Like many other New Yorkers, the past week was wrought with hardships and aggravations. I am extremely grateful to be alive, to not have suffered incredible structural damage, and to still be here to describe the experience.

That said, my focus on self-healing, meditation, and peaceful centeredness was completely swept away with the downed electrical wires that kept me without heat and power for five days. In spite of the fact that this experience afforded me an invaluable opportunity to dismiss my material possessions, to cast off unnecessary, mind-numbing distractions (vices), and keep in tune with the beauty of the world-as-it-is, I was too frazzled by stresses that surfaced like bubbles in a boiling kettle.

For one thing, I couldn’t get myself to write, being so accustomed to using a keyboard.

Secondly, the lack of heat made it uncomfortable for me to meditate, and with the exception of a single night, I fell asleep nurtured by the natural warmth of candlelight.

Thirdly, the stress of a disrupted schedule, the inability to clamp onto any work, the limited ability to travel, and the fact that I was stuck in my pseudo-suburban neighborhood with just my family for company pushed me to the limits of my patience.

I reflected largely on the intricate spatial inequalities wrought by Hurricane Sandy (living in a mixed-income, home-owning neighborhood, right north of a richer, whiter neighborhood–Howard Beach–by Jamaica Bay). I thought about who was most affected, who had the means to escape.

Fallen trees and wrecked cars were a common site throughout South Queens in Sandy’s aftermath

But what most affected me was something closer to home–feeling trapped in a space without a community, without the presence of friends I could warmly trust and confide in, share moments with while commiserating.

Even more dangerous were the irritations I experienced spending–forcibly–time with my parents as we negotiated ways to cope with the lack of electricity and heat. While there were “productive” moments, moments of dialogue and strategizing, all in all, I felt as if I was falling into an old space again. A swirl of facts, thoughts, vague dreams kept reverberating in the halls of my mind:

I’m 24… It’s been two years since I’ve returned from college…I’m still living with my parents because my health condition makes moving out too costly… I’m stuck in a job that has made me compromise so much of my integral values, and has made me dislike the things I once enjoyed… My relentless, chronic pain continues unresolved, crippling me before I ever had a chance to craft a life for myself… Where I had hope a year ago, now I’m moving about in quicksand with nothing to keep me inspired… My hopes of becoming a self-fulfilled activist and educator have been destroyed by a callous joke by the Universe…My hopes of finding love and community have been cut at the root by my heinous disease… My dreams and aspirations have have been blown away like boardwalks by the Jersey Shore… 

The thoughts kept filling the spaces of my mind the way Sandy surged through basements. I partly feel guilty because I know my situation does not represent the worst–nothing comparable to the lives lost and homes ruined forever.

Yet I was forced to face the demons of this past year: in my own way, though I was not meditating on stillness nor meditating in the present, I was meditating on the emotions, fears, and anxieties that surfaced–seemingly spontaneously–once I lost the comfort of material distractions.

I had moments where I wanted to chastise myself. I could have used the time to do real meditation, concentrating my attention on the beauty of the world before me, my life-existent… But I couldn’t. I’d close my eyes and…there it was. A vortex of indescribable loneliness. The past and the future inter-crossed like two fronts colliding to birth a tornado. I was caught in the middle, and try as much I wanted to, I couldn’t detach myself.

This past week, surviving Sandy didn’t mean surviving a wrecked home or  surviving damages to my body and health. (The wreckage is disheartening, but the efforts people are taking to survive, move on, and help others is inspirational) Sandy was memorable, not because of the lost electricity and heat, but because of how it challenged me to experience the spaces and movements and the pace of time with open eyes.

It was, instead, an experience living through mental and emotional chaos–a disruption of the day-to-day that challenged me to stay grounded…and be centered.

I can’t say I passed the test of Buddhist dharma. (Which is what? Keeping my cool? Maintaining perpetual loving-kindness?) On second thought, maybe the notion of this being a ‘test’ is a fabrication of my mind. As are the fears, anxieties, and chaotic mental intrusions that challenged me this last week.

I end this post with some sound words from Thich Nhat Hanh, Zen poet, teacher, and political thinker. In an essay about embracing the inner child within, he proceeds to talk about the pain that we confront when we allow our knots of suffering (i.e. our basement) to surface. He writes:

“When we dismantle the barrier between the basement and the living room, blocks of pain will come up and we will have to suffer a bit. Our inner child may have a lot of fear and anger stored up from being down in the basement for so long. There is no way to avoid it.

That is why the practice of mindfulness is so important. If mindfulness is not there, it is very unpleasant to have these seeds come up. But if we know how to generate the energy of mindfulness, it’s very healing to invite them up every day and embrace them…

Every time you have your internal formations a bath of mindfulness, the blocks of pain in you become lighter. So give your anger, your despair, your fear, a bath of mindfulness every day…”

Rather than doping, distracting, anesthetizing ourselves from a world that is fraught with savage inequalities and violence, perhaps the take-home message is to have courage in confronting the problems that plague us. To have courage to walk straight into the storm.

And to be mindful every step of the way.

Noble Truths

In Chronic Pain, Health Justice, Multiple Sclerosis, Philosophical Musings on October 28, 2012 at 12:08 AM

“We may think that our exhaustion comes from our job or our family, but in many cases, it’s not the job or family itself — it’s our mind. What’s exhausting us is how we relate to our life conceptually and emotionally. We risk becoming so stuck in the realm of concepts that nothing we do feels fresh, inspired, or natural.”
– Dzogchen Ponlop, “Rebel Buddha”

Lately it has felt as if the Universe has been unkind to me. With a sick, unhealing body, stuck in a stressful and thankless job, all the while living in emotional vacuum of my parents’ far-away home, it feels as if my years of labor, anxiety, and emotional torment were lived through in vain. I can exhaust countless words trying to bemoan my hapless situation, in which I feel as I’m whirling about in a nightmarishly interminable unmerry-go-round. The same frighteningly dark, long, and lonely nights on the A train to Ozone Park; the same mournful gaze into my mother’s anxiety-ridden eyes and aging face as we discuss one problem or another; the constant re-positioning of myself at life’s various forks-in-the-road…

Yet, while the war may seem harder than ever at times, I’ve uncovered new facets of this ephemeral space we occupy on this Earth. The world can be harsh and merciless some days; on others, it is intriguing, maybe even exciting; and yet on others, boring and unamusing. At best, it is constant in being so inconstant–a seemingly pretentious euphemism, but a veritable dialectic if I ever encountered one. (I hope what follows will shed light on this)

The brutal facts: no one seems to know what to do with me. The constant, dull throbbing at the back of my head (which I can now say, with a certain modicum of certainty, is due to at least one lesion in my brainstem) seems to be impervious to resolute treatments. The traditional painkillers, the antidepressants, the antiepileptics, the vitamins, the herbs, the acupuncture, the yoga, the meditation, the aromatherapy, the avoidance of drugs and alcohol and dairy, and… sigh… the transcutaneous electrical nerve stimulation…. I’ve traversed the country and back, spent countless dollars and seen various specialists, and there it still is. The ceaseless painless pain that has bound itself so inextricably that I’ve forgotten what it’s like to have a non-throbbing head.

It’s been nearly a year, and this headache has not stopped for a second. Sounds terrifying, doesn’t it?

Yet, as harrowing as it seems at particular moments, it seems like it was a much-needed gift from a tough-love mother. I’ve had to contend with bodily limits in a strange time in my life, with dietary restrictions compounded by an inability to overexert myself physically while the rest of the world sees an able-bodied young man. And what is difficult to explain is that the symptoms ebb and flow in what must make an incredibly erratic storm: some days I feel well-rested and free-flowing in my thoughts, able to run and teach and multi-task; others, I am sluggish and fried, my bones as heavy as lead. These inconstancies have made me re-appreciate the impermanence of it all.  From birth to death, the boundaries we draw (healthy/unhealthy; fast/slow; young/old) are at best our minds’ attempt to impose an order we can live by—but they are mental constructions that, while helpful at times, can be harmful if we take accept them too religiously. They can incarcerate us, circumscribing the limits of our experience and potential.

I say this because it resonates with my experience. I’ve kept feeling disappointed because a notion that I harbored around age (I am 24, and therefore I should be able to do _____, and not feeling _____) prevented me from accepting things as they were, as the Universe unraveled them to me. I kept feeling disappointed because I harbored a notion that good health was something that was indebted to me, that I’ve suffered enough already (as if that logic ever worked for anyone!). These are concepts that prevented me from seeing the world as it is, as opposed to what it ‘ought’ to be.

For me, the journey to understanding this came from exploring medical alternatives to what I finally accepted to be a long-term condition. When I came back from the West Coast and began exploring yoga, meditation, and acupuncture, I started to experience incremental improvements…but not necessarily in the limited notion of ‘fixing’ a broken piece of my body.  By concentrating heavily on the breath, and in my body’s simple movements, I experienced a newfound energy, a newfound curiosity for a world jaded by overstimulation and rigid concepts and desires.  Going back to the labor force has made the task of balancing stresses an immense challenge, but as with my political reawakening this past year, these past few weeks have opened up a spiritual horizon I had once completely shut off.

I continue to struggle with my health, circling through combinations of treatments and specialties while trying to carefully center myself—through the continuous hurdles of disappointments and hopes. But there is an invaluable insight I’ve gained through this entire experience that has made me come to an unexpected peace. I don’t claim to now live my life completely in perpetual awe and peace—I’m still a work-in-progress, but with a certain level of self-consciousness that also breeds an organic acceptance.

I’ve learned—in new, unpredictable ways—the importance of self-forgiveness and acceptance, of seeing the world through the gaze of something much smaller than ourselves. That breathing and walking and talking and laughing can be miraculous events if we allow them to be.

I can’t claim to have found that ever-evasive goal of enlightenment, inner peace, or love for humankind. In fact, any effort to force ‘peace’ and ‘loving-kindness’ is a contradiction in terms, and operates symmetrically opposite to the world of competition, greed, and power that is destroying so many of us at once. However, I’ve caught onto a new modality of thinking that deconstructs the notion of “world” and “I,” “you” and “me,” “pain” and “happiness.” For this knowledge, I am grateful. And for all this, I will continue to avidly explore those less-appreciated spaces at the interstices of mind, body, and spirit.

 

 

Kristin Richardson Jordan

DISRUPT THE DISTRICT

Ramp Your Voice!

A Self-Advocacy & Empowerment Movement for People with Disabilities

Xicana Ph.D.

A Xicana Maestra on Politics, Education, y mas

David A. Shirk

Associate Professor, Political Science, University of San Diego

chris selzer's HSCT quest

no chemo, no cure

Not Without a Fight

My Journey Through HSCT Treatment for Multiple Sclerosis

Caroline's HSCT stem cell transplant for MS 2017

A month at Clinica Ruiz in Mexico to stop MS

To Puebla and HSCT

A blog about receiving HSCT for MS

ChangeLab

Strategy, Research & Vision for Racial Justice

Todd Miller

Todd will no longer be posting on this site. Please visit www.toddmillerwriter.com

National Pain Report

What You Don't Know Can Hurt You

andrea smith's blog

The 18 year plan to end global oppression

PhD(isabled)

What it's like doing a PhD with disability or chronic illness

Enero Zapatista

decolonize! towards local and global autonomy