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Posts Tagged ‘MS’

When A Trip to the Emergency Room Leads to More Trauma

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

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

Evening One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evening Two

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Escape from the Inferno?

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

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

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

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

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

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

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

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

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

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Making Sense of Medicinal Yoga

In Health Justice, Multiple Sclerosis, Philosophical Musings on June 11, 2013 at 10:12 PM

For the longest time, I’ve been a fitness enthusiast. It started when I was a teenager trying to overcome severe depression, when hitting the gym to boost my confidence and self-esteem.

Since aesthetics didn’t factor in until later, I simply enjoyed the way working out made me feel in my own skin.

The law of impermanence would ensure that wouldn’t last. It just didn’t occur to me that it could happen so quickly.

One summer afternoon, sometime after my sophomore year in college, I was in the gym as usual and sweating profusely after a few sets of an abs workout. Suddenly I noticed stars flashing in my left eye. I didn’t think much of it at first. I assumed it was an after-image from the bright sun that day.

When the after-image persisted and intensified over the course of the following days and weeks, I became concerned and consulted an ophthalmologist in Brooklyn.

Before long I was being shuffled between facilities and doctors, had blood and fluids drawn, had my head thrown into an MRI machine. Within two months, the life-altering diagnosis: MS, or multiple sclerosis.

Fast forward five years. I’m as dreadfully skinny as I was before hitting the gym. The Universe has tested my resilience by putting me through a number of flare-ups, including a heinous one just this past month.

In this one, the lethargy and weakness were beyond what most of you temporarily healthy folks could imagine. A walk to the pharmacy felt like a hike up a canyon. Bedridden and constantly sick, I knew something had to seriously change.

After getting treated for my relapse, I made a decision to analyze my habits (again) and see if there was something else I could do that I haven’t already done.

I’ve done yoga during sporadic periods of my life, never consistently, but always understood it was a “healthy” thing to do. I pursued this course of thought.

Now a few weeks in of assiduous practice, with as many as two to three sessions a day, I can optimistically report a number of improvements that confirm the widely reported health benefits of yoga I had previously only read about.

First, I’ve been able to attain levels of flexibility unthinkable when I was an amateur bodybuilder. More importantly, I’ve seen an upsurge in energy, stamina, and libido, and find myself feeling more at ease with (and even enjoying) my newfound unemployment. A

nd once again I am writing and returning to long ignored interests. Like millions of practitioners worldwide, I’ve become completely enamored with the millennia-old tradition of yoga.

Not one to be complacent with yoga-as-exercise, I decided recently that I wanted to investigate this ever-alluring science as thoroughly as possible.

After all, why should I not invest some months learning about yoga when it can potentially revamp my quality of life for decades? With a chronic condition that is poorly understood and over which I feel little control, doing yoga gives me a desperately desired feeling of control.

But my awarenss of the health benefits of yoga were rudimentary. Although I knew of research studies pointing to health benefits, the abstracts I read were unhelpful in explaining the actual substance of yoga.

When I set out to investigate the literature on yoga more thoroughly, however, I was impressed by its nuanced complexity and sociopolitical history—aspects of yoga that are rarely, if ever, explored in the context of general courses. Per usual, I was left with more questions than answers.

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The Sanskrit symbol “Om,” inscribed within a mandala.

One of the things that has impressed me the most vis-à-vis yoga is the vast proliferation of schools, styles, and practices that fall under its name. For something as new to the West as yoga (having first been introduced to europe and the united states in the 1890s), it is fascinating that one can now find a yoga class, or even a yoga studio, in virtually every major amerikkan city.

The many schools of yoga include such disparate styles as Power Yoga, Bikram Yoga, Astanga Yoga, Kundalini Yoga, even Naked Yoga and Laughing Yoga. Moreover, according to the New York Times, the number of U.S. practitioners rose from 4 million in 2001 to a whopping 20 million in 2011 (add link). Having experienced first-hand the variations in yoga, from the highly exercise-oriented Astanga to the breath-centric spirituality of Kundalini, I was fascinated by what seemed to be an ever-growing trend that churned out classes faster than you can finish chanting ‘Om.’

Quite naturally, my skepticism led me to wonder whether a rigorous traditional and spiritual discipline, said to be thousands of years old, was going the wayside of other traditional, non-white customs co-opted and bastardized by a dominant consumerist culture.

To be clear, I can emphatically say that I’m not against modernizations or alterations of tradition, especially when such changes are necessary or beneficial.

Yet, when something becomes a trend in our media-saturated profit-driven society, with corporatized yoga being retailed in niche markets that engender highly lucrative careers for certain charismatic self-professed gurus, I have considerable reason to be skeptical. But this self-righteous skepticism is mixed uncomfortably with an insatiable curiosity to plunge the depths of a science with purported healing capabilities. And why wouldn’t I?

Living with MS, I am lured by the idea that I can foster the healing power of my body and mind to keep disabling flare-ups at bay. So this brings me to the central questions I sought to answer: What exactly is yoga, and how do its supposed medicinal properties work? Is there a deep, uncovered wisdom in this practice from ‘the ancients,’ or are we being hoodwinkeden by a marketing ploy that exploits our exoticized fantasies?

Being relatively new to the study of Yoga as a bona fide discipline, I make no claims to being an authority in this field. Nevertheless, from what I’ve been able to cull from the literature, here are some basics:

  • The word ‘yoga’ is used to refer to a number of distinct disciplinary practices that have their roots in ancient India, and that are encompassed within Hinduism, Buddhism, Jainism, and Sikhism. Many scholars postulate an origin in Dravidian civilizations as far back as the 7th millennium BCE.
  • The very term ‘yoga’ is popularly interpreted from the Sanskrit as meaning “union” or “a bringing together”—an allusion to the Hindu belief in an ever-present connection between individual self (jivatman) and Absolute, or cosmic, self (paramatman).
  • Yoga has many definitions. For instance, Timothy McCall, a doctor and writer of the book Yoga as Medicine, defines yoga as “a systematic technology to improve the body, understand the mind, and free the spirit” as well as a “series of practices that allow you to steadily gain discipline, strength, and self-control while cultivating relaxation, awareness, and equanimity.” Jean and Doriel Hall, writers of Astanga Yoga & Meditation, refer to it as “an inner journey to the true centre of the soul,” while Yogi Bhole Prabhu defines it as “an experiential science of self-study.”
  • The term ‘yoga’ appears frequently in the Bhagavid Gita, one of the oldest scriptural texts in Hinduism. In it, the deity Lord Krishna tells Prince Arjuna to “[p]erform your duty equiposed…abandoning all attachment to success or failure. Such equanimity is called yoga” (2.48). According to A.C. Bhaktivedanta Swami Prabhupada, this aphorism can be interpreted to signify yoga as a “means to concentrate the mind upon the Supreme by controlling the ever-disturbing senses.”
  • The first writings to formally systematize the practices of yoga were the Yoga Sutras of Patanjali (C. 100BC – AD100), which defined it as a state wherein “there is stilling of the movement of thought.” It is the foundational text of what is now called raja yoga.
  • The first known written introduction of asanas [bodily postures] come from the Hatha Yoga Pradipika, written in the 15th century.  It is believed that hatha yoga became the dominant yogic practice in India after the turn of the first millennium, and it is the basis of what we commonly refer to as ‘yoga.’
  • Much of what the mainstream calls ‘yoga’ (i.e. a set of postural movements) actually refers to a specific type of yoga, hatha yoga, and specifically within that, the asanas. Yoga has traditionally included meditation, breath work, and various practices aimed at taming the mind with the goal of self-realization. In classical texts, yoga simply refers to communion with the Absolute; consequently, there are forms of yoga that do not involve asanas, such as bhakti-yoga (yoga of devotional service) or karma-yoga (yoga of action).
  • While many of us have been taught that the asanas come from ancient knowledge passed on through the ages, research into the literature suggests that the vast number of the postures used today were invented in the 20th century, if not more recently, by a relatively small number of gurus (to see one treatment of this issue, read yoga expert Alanna Kaivalya’s article in the Huffington Post. In fact, much of what is taught in the different modern yoga schools can be traced to Tirumalai Krishnamacharya, a yogi said to have learned the ‘original’ asanas from an unpreserved (and unverified) text. The only known asanas preserved in the writing of classical texts still with us today are the mere fifteen shown in the Hatha Yoga Pradipika.
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Warrior I pose

Researching the historical and philosophical underpinnings of yoga gave me added reason to doubt certain claims (such as that it never hurts and always heals 123) while feeling validated in my belief of others.

For one, I think it is necessary to acknowledge the modernization, commercialization, and yes, the colonization of yoga. The possibility that most of the known asanas were created after introduction of yoga to the West, as well as the known reality that certain yoga schools (such as Power Yoga and Phoenix Rising Yoga) were founded by Western yogis, makes it evident that yoga, in the broadest terms, is not simply an ‘ancient’ discipline.

The most obvious changes, such as the invention of new asanas like “airplane pose” and the popularity of music-thumping yoga classes in sports clubs, make it clear that many amerikkans are not averse to the blatant evisceration of spirituality and philosophical inquiry from classical Yoga. Personally, I can respect some of the asana-focused courses of corporatized yoga—given, of course, that it is advertised as the exercise-centric activity that it is. So let’s at least make the terms clear.

As far as medicinal yoga is concerned, such clarification is needed if we are to genuinely understand its healing properties. After all, how best to disaggregate research data or understand the ideological substrate of yogic practice than to know what, in actuality, we’re doing?

Putting Yoga Inc. aside, there are actually many reasons to take yoga seriously as both an ancient spiritual science and as a form of body-mind discipline. For one thing, yoga works. I’ve experienced firsthand its potential to heal, and this is in addition to the reports many of us have likely read or heard regarding its health benefits (McCall, 2007):

  • increased flexibility;
  • stronger muscles;
  • improved immune function;
  • increased oxygenation of tissues;
  • relaxation of the nervous system;
  • an activated prefrontal cortex;
  • lowered stress hormones, blood sugar, and blood pressure;
  • pain relief;
  • improved psychological health;
  • an elicited placebo effect and many others.

Recently, it was uncovered that yoga has a beneficial impact on the genetic expression of immune cells. This latter finding is worth emphasizing, for the fact that yoga can tap into the molecules that formulate the fabric of our very being is a very powerful realization, indeed.

One of the factors said to contribute to yoga’s success, even as evidenced in the realm of empirical evidence-based studies, is its ability to unify body and mind (and for believers, the cosmic soul) through the breath.

Whereas Western science has only recently uncovered the role of mental force on bodily responses through such disciplines as psychoneuroimmunology (PNI) and positive psychology, this connection has long been axiomatic to yogic philosophy. In fact, the vinyasa flow of the physical postures is believed to help relax the nervous system enough to facilitate meditation, known for easing excitatory responses and producing mental clarity.

Because the ultimate goal of classical yoga was to produce serenity through a quieting of thoughts, the goal of which was self-realization and commune with Brahman, our cosmic self, breath work and meditation were always integral to yoga practice. In this day and age, when stress contributes to a disproportionate number of medical conditions, yoga can help us modify our bodily reactions to environmental stressors through a deactivation of the sympathetic nervous system and a “rewiring” of neural networks.

At the macro-level of medical philosophy, yoga also provides a much-needed holistic approach to the body. Incorporating a corporeal ontology that links mind, spirit, and energy, yoga’s relation to medicine is arguably distinct from the dominant allopathic model that treats the body as a compartmentalizable machine. Patanjali’s Yoga Sutras do not mention asanas, but rather, such concepts as pranayama,  yamas (abstentions such as non-violence or non-stealing), dharana (concentration), and dhyana (meditation), all of which are necessary for the ultimate goal of self-realization.

Although they lacked the imaging technology to study the endocrine system, yogic scholars were nevertheless able to identify what they called chakras, centers of energy aligned with specific plexuses (nerve clusters) and endocrine structures in the body. Their studies also highlighted the importance of the breath in facilitating changes in energy throughout the body.

This alternative to the dominant Western medical model, which has been with us in its modern form only since the 19th century, may become increasingly necessary as the years advance. In my own experience, yoga as an all-body, whole self discipline has provided me with benefits that the dominant medical model would have achieved only through excessive risk and costs: pain relief, nervous relaxation, aerobic conditioning, energy improvement, improved libido. By way of contrast, my own experience with doctors makes evident the alienating dynamics of capitalist medicine. Having seen various doctors for my neuropathic pain, the atomizing tendencies of the established medical field became apparent when the different neurologists I’ve sought for help all provided distinct explanations of my condition with corresponding, distinct remedies and treatments. The fact that four different doctors with the same specialty (neurology), three of whom share the same sub-specialty (pain management), could offer such disparate treatments is telling.

While Yoga is no panacea, it might be the perspective we need in the face of austerity medicine, environmental degradation, factory farming and other forms of systemic violence that threaten the viability of our species.

While acknowledging the breakthrough achievements of allopathic medicine, we should also be cognizant of the deteriorating effects of the neoliberal impetus to turn everything—including land, clean air, and water—into commodities. And I anticipate a rise in more young people, like myself, finding themselves with unexplainable autoimmune conditions. In this age of empire, we might just need yoga if we are to survive.

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.

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.

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