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Posts Tagged ‘multiple sclerosis’

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.

Desperate Times, Desperate Treatments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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My new portable TENS machine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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