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Posts Tagged ‘mindfulness’

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.

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Thank You, Chronic Pain

In Chronic Pain, Creative Writing, Philosophical Musings on November 22, 2012 at 11:27 PM

Since my spell of chronic pain began last year, I’ve had to come to terms with some harsh realities.

I will likely never be able to take a fast, quick run on the treadmill without wondering if my head will explode. I will likely never be able to escape from frequent medical visits to ensure that my health is “stable.” For all I know, I may never again have another alcoholic drink, hike a steep mountain, enjoy a late night party, or go on a date.

This isn’t me trying to cast an overly pessimistic spin on a day I’m supposed to be “thankful.” In fact, my sense of gratitude for life has expanded tremendously since I was hit hard by the limitations of my condition(s) and the death of my brother last year.

Yes, living with pain sucks…but it has also thrown in me new directions I would never have entertained. It has forced me to accept my humanness, to see my abilities and limitations with an entirely new pair of eyes.

I am often awed by the impressive machinery that is the human body (its complexity and self-healing capabilities) as well as by the ubiquitously enigmatic mind. I’m continuously humbled by the expansive mysteries of this Universe and the resilience of the human species.  Yes, living with pain has taught me a lot.

That said, I’ve pondered the meaning of “thankfulness” in a world that has pain and wonder if my thoughts will resonate with anyone else.

“Pain” is itself a term that can be conceptualized and packaged in many ways, but however we choose to define it, it’s clear that we live in a world incredibly damaged by pain: the pain of war, the pain of genocide, the pain of past and present, the pain of brutal conquest, slaughter, and slavery.

I can delve deeply into the histories of colonized and destroyed societies, of broken families and cultural groups, of lonely, pain-ridden martyrs. I think, for instance, of the genocidal colonization of the Americas that reduced the populations of Indigenous peoples from 70-100 million to 12 million within the first century of colonization and conquest (the 1500s).

I think of the 50 million or more Africans who were killed or forcibly removed through the slave trade during the initial centuries of Western imperial expansion in the “discovery” age.

I think of the millions of people today who contend with air bombing, displacement, and tyranny in places such as Gaza, Afghanistan, Syria, and yes, even the ever-so-powerful “Western” nations. (The United States, for instance, has the highest GDP spending on weapons of mass destruction, one of the highest-per-capita incarceration rates in the world, as well as an economic inequality index that should make us all shake our heads in exasperation. One need only look at which residents of New York City are still battling for basic necessities in the aftermath of Hurricane Sandy)

However, knowing the merciless violence perpetrated in our past is not enough: it is important to recognize how the pain of our ancestors continues to live with us today.

Many of us understand the role that racism, sexism, classism, homophobia and other systems of oppression play in our collective dehumanization.

However, what’s often not understood is how we perpetuate these oppressions in our daily practices. We are complacent when we are left thinking that these violent oppressions are part of a detached past of which we are not to blame (perhaps our less-informed ancestors, but not us). We are complacent when we imagine racism and sexism as “issues” that were overcome in the past–and if they still exist, it’s because of the ignorance of “others” for which we cannot be held liable.

Such moral detachment doesn’t help ameliorate the “issues”–really, the persistent violence–that we see in the world today. Whether we speak of the Black underclass or the “feminization of poverty,” whether we speak of inequitable access to quality education, jobs, and health care or the fight for political representation, the real “issue” we must confront is the historical reality of power–who has it and how it’s used.

“Privilege” talk is helpful only if it engages in a radical re-reading of how power operates in our day-to-day social world. And that means acknowledging those upon whose blood and sweat we’ve come to enjoy our material goods.

So, today, in recognizing that “Thanksgiving” is not a holiday that emerged from the “coming together” of grateful European colonizers and Indigenous Americans, I’ve decided to use this time to redefine the meaning of “thanksgiving.”

While I don’t adhere to a particular religion, I feel many wouldn’t argue with the essence of these basic points, which also befits the Buddhist practices of mindfulness and loving-kindness.

  • Expressing gratitude should not be a once-a-year practice. We should make “thanksgiving” a daily practice, which we can display by consistent kindness to others and  recognizing that not everyone shares our privileges (e.g. having a place to live, living without fear of murderous attacks of war, etc.) Their pain is our pain is the Universe’s pain.
  • Coming together with our friends and family should not necessitate a special holiday. If we’re given the time off, we should make use of it, and if it’s a “good excuse” to meet with friends and family, do so.
  • If we’re in the spirit of “giving thanks,” we should thank the people whose land we stole, the people whose labor power enabled us to have food in our refrigerators and on our plates, the animals whose lives we had to slaughter to fatten our bellies.

May peace and love reign in our hearts. May ignorance and greed not cloud our eyes to the world around us. May we overcome the pain of our past without inflicting pain on others in the present. May we have courage to live with our eyes open, and our minds and bodies ready for the revolution. 

Hasta la victoria, siempre. 

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