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Archive for September 18th, 2012|Daily archive page

Fighting Chronic Pain and Autoimmunity, Fighting for Our Liberation

In Chronic Pain, Life with Chronic Illness, Multiple Sclerosis, The Revolution on September 18, 2012 at 9:17 PM

Over the past year, a sudden and unexpected worsening of a pre-existing medical condition has caused me to re-evaluate my strengths and limits as an organizer committed to social liberation.

Part of living with condition like Multiple Sclerosis (MS) has meant learning to adjust to the changes in my body: there is now a mandatory minimum number of hours of sleep I must have, a mandatory maximum number of hours I can work in a day, and there are diets and exercises that may improve my long-term health outcomes.

That said, my experience has shown me there is considerable confusion around chronic health conditions–and even more so, around chronic pain.

There might be many reasons for this, but mere visibility plays a key role: people can’t understand what they can’t see. After all, you can see someone’s crying, screaming, yelling, and various expressions of pain, but not the pain itself.

But I also like to think of pain broadly, encompassing the emotional, physical, psychological, spiritual. This understanding of pain also shapes my understanding of my own struggles, for as a queer activist of color with a chronic health condition, I know that I’m fighting pain on multiple fronts: the physiological pain stimulated—in my case—by irreparable nerve damage; the psycho-emotional pain of years of individualized social ostracism and alienation; and the transgenerational pain of centuries of racism-fueled colonization and genocide against my family and ancestors.

Explaining all of this in a manner that elicits compassion and empathy is a gargantuan feat: at best, I am left with an annoying task of trying to find precisely worded allegories and metaphors to describe a pain that I feel on a constant basis.

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As the World Burst Aflame

For me, one of the most harrowing examples of how I struggled with my chronic condition came last September, with the explosion (of all things) of Occupy Wall Street.

To be physically distant from a movement and consequentially feeling out of the loop is one thing. But to be living and working so near one of the most impactful movements in recent memory and still being unable to be physically present made me feel hopeless and aggravated.

Geographic distance was not a barrier in this case—but for my body, hardly sustaining the energy to make the commute to work and back—and in the worst occasions, being slogged around from one ER to the next—Wall Street may just as well have been at the other end of the planet.

My problems started one morning in September last year, waking up unable to feel the left side of my body while the world around my bed spun vigorously.

I felt like I was injured at sea, throttling about in a flimsy boat during a torturous typhoon. Everything was spinning so rapidly that I couldn’t read the front page of a newspaper if I tried, or see whether my father’s expression was a smile or a scowl. Quite literally, from one day to the next, my body had unleashed a storm that I’ve yet to recover from—and probably will never fully recover from.

I was diagnosed with MS four years ago, after a sudden, inexplicable blindness in my left eye (optic neuritis). I regained my eyesight within months, and although I experienced certain MS-related symptoms while finishing my college years, I was virtually asymptomatic for three years.

As many know, MS is a chronic, neurodegenerative condition that often first rears its ugly head in young adults (ages 20 to 40), altering life paths in unexpected ways. The embodied experience of MS varies from person to person: as remarkably complex as the nervous system is, individualized manifestations of the conditions are just unpredictable.

Although I was not problem-free since I was first diagnosed, I can say that I was generally satisfied with my state of health as I finished college and entered the workforce. Then swiftly, with little support and preparation, I started to go through a wave of relapses.

The extreme vertigo I felt in September was only the beginning of my immune system’s attack on my nervous system–one that would re-shape the way I experienced the world. I had a constant burning sensation at the back of my neck. I was experiencing a mental fogginess that made getting through the work day a nightmare. Some days, an all-body fatigue would overwhelm me, forcing me into a sleep coma the moment I snagged a seat on the subway.

Worst of all were the hard-to-describe symptoms—the symptoms that simply nagged me all day, but seemed too strange to be real, like the buzzing sensations that ran through my abdomen and thighs, the periodic numbness and weakness in a leg or finger, or the dreaded feeling of being “squeezed” at the head. (I later learned that a term, “dysesthesia,” is used to refer to these hard-to-describe sensations.) Needless to say, these were all uncomfortable sensations that made it difficult to make it through otherwise simple life tasks.

Like a brush fire, the changes that began in my body started happening suddenly, unexpectedly, and with awe-inspiring speed. And it was that same sort of storm-like celerity that shaped much of what was happening in and around me, inside my body as much as the heart of the city, between September 2011 and January 2012. The question for me was: what initiated the spark? And why?

For better or for worse, for its shortcomings and its strengths, OWS had a unprecedented impact on my city, suddenly transforming downtown Manhattan–to say nothing of Wall St!–into a hub of alternate world-making. Being more than just an encampment, it was, at its best (and for all its shortcomings) also a reflection of a new possibility–a world simmering with energy, confusion, creativity, frustration, and optimism at once.

But as much as the movement meant—for some—a connecting across class, race, and gender lines for the creation of revolutionary community, my family wouldn’t be a part of any of this.

That’s because my older brother, who spent most of his life battling a crippling, painful rare medical condition of his own, was on his death bed. My parents cried, yelled, and appealed to the supernatural as I prayed that my body would hold its ground. There’s no question for me that the stress likely ignited my flare ups, igniting my body’s inflammatory response and quickly driving it into a tailspin I couldn’t control.

It was clear that a burden my family carried for decades was now igniting something in my body. I even prayed that I would at least make it to my brother’s funeral.

I recall one night watching the news in a room at my brother’s hospice.

I remember him saying to me, “With everything that’s happening in this world, it’s probably good that I’m leaving it.”

He was right about the whirlwind changes: between the Arab Spring and May Day 2012, it felt–for those of us paying attention–as if the world were catching on fire. But so were my nerves. And it might have been limited to my own social circles, but everything seemed and felt urgent. Everything—from our bodies to the electronic media to capitalism to the global biosphere—seemed frail enough that it could break apart in months or days.

More importantly, however, were the questions that were newly ignited in my consciousness about spirituality and mortality and the meaning of being human. Understood alongside everything happening locally and globally, I also saw it all in relation to a larger, more urgent question about what it means to truly live in the moment. The importance of the ever-changing, ever-precarious now.

In a way, although my body felt like an urn full of ashes, I felt spiritually reignited into fighting for what truly mattered.

Fighting for What Matters

An otherwise relatively controlled, asymptomatic MS for three years went completely haywire in a matter of three months (September through November).

And only after several disheartening attempts of dealing with doctors, nurses, hospital administrators and my health insurance that I was able to get the medication I needed to tame this beast.

I now receive a monthly infusion, and several months after the unexpected set of relapses, the condition has supposedly stabilized. However, it created irreparable damage to my central nervous system that has transformed my day-to-day life.

Chronic headaches and fatigue are no longer minor nuisances that I can fight off with a cup of coffee or aspirin. These days, I wake up and fall asleep with a constant throbbing at the back of my head, and under conditions of high stress, humidity, or exercise, the throbbing persists at a faster rate, spreading to my upper back and ears.

The medication I’ve been taking for the headaches have been superficially helpful, at best, making it tolerable to get through the day.  However, the same medicine also worsens my almost-equally crippling fatigue requires its own drug treatment, meaning that I’m often playing hop-scotch with potent pharmaceuticals day and night.

What has been among the most harrowing of my experiences has been the ability to relay what I’m dealing with to those close to me, and has been one of the most puzzling identity-related experiences of my life.

As a queer Latinx of urban, working-class origins, having conversations about race, gender, class, and sexuality have been a part of my adult life for quite a while, and although I don’t think anyone can be an expert at these things, I was at least somewhat familiar with the territory of conversation.

These days, whenever I started bringing up my health issues at meetings or other social gatherings, I sensed a mix of well-intentioned concerns and incredible confusion.

This has all led me into intense questions about privilege and intersectionality, particularly as it relates to illness and disability. On one hand, I have some privileges relative to other individuals with chronic, degenerative conditions: I am young, mobile, and not obviously sick as far as appearances are concerned. On the other, the invisibility and unpredictability of my symptoms created issues in terms of others’ understanding.

How do I explain the sudden onset of mental fog or crushing fatigue one moment, or a sudden ebb of symptoms the next? These are difficult questions to tackle if you are someone who has been committed to community organizing for some time, working on campaigns, facilitating meetings, knocking on doors, and juggling various other life (non-activism-related) demands.

What truly made me feel disabled was being unable to see my brother in the hospice program where he was sent, or to be present at the general assemblies happening just miles away. I felt the burn most strongly in being absent—emotionally, mentally, spiritually—from those spaces where things seemed to matter.

To Have a Body and a Voice

It’s been several months later and my MS is seemingly under control—though I continue to live my day-to-day with chronic pain and fatigue. Today, I experience activities that matter with a new level of gratitude. I am grateful to be able to be here, typing this, reflecting on issues of carnal importance (for what could be more important than the fight for one’s life and freedom?).

I’ve also made decisions that reflect the lessons I’ve learned in the past year. Though I may live with a limited reserve of energy, I’ve chosen to spend as much of it as possible doing what I think will enhance my spiritual and intellectual growth, as well as doing the work of fighting for the liberation of my communities.

That said, my struggles are constant and run deep; I share them with the understanding that I have privileges many others in similar situations do not.

Even among us revolutionaries who talk about capitalism, ecocide, and heteropatriachy, we’re often mute about the sort of capital that Marx did not always discuss—the love and support of friends, family, and colleagues; the ability to build community; the ability to glide through life not bumping into as many obstacles as others.

In bringing up my issues with MS, my family, social justice organizing, and even the metaphysical questions about what it means to be human, I’m also trying to think through their inter-relationship.

For one thing, a truly intersectional understanding of social justice would need to include disability justice. Full stop. I also think the work for social liberation must necessarily acknowledge a common humanity as well as the social realities that make our lives painfully different.

I also write about voice and privilege because a newfound recognition of my humanity has made me fear complicity through silence.

As we continue to awaken to the harsh realities that mass silence has created in the form of our prisons, military and medical industrial complexes, and food-warping industries, I’ve also come to realize (with my brother’s help) that I’m of no use hiding in a library corner or computer desk if that is all I do. Meaning, in other words: we need to find a way to fight from our positions, wherever that is, and whatever form it takes.

There’s an online meme that’s become popular as of late that has become branded in my brain. “I always wondered why somebody didn’t do something about that. Then I realized I am somebody.”

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This message is simple and clear.

Confronting the death of a loved one, dealing with chronic pain, and being part of a social movement provided me a crucial perspective on exactly how to be someone. Admittedly, it can be frightening to give up our habits, comforts, and attachments–to face the ugliness head on in an attempt to change it. On the other hand, given everything that we could potentially lose over time if we don’t reverse ongoing wars, destruction, and violence, what is there left to lose?

After all, whose lives and freedoms are we fighting for?

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