Wednesday, April 27, 2011

What Should Come First- The Identity Crisis or the Vow of Poverty?

I often feel at odds with an imposter that has usurped my soul and, in addition (grasping at the most self-aggrandizing of language) made me a total phony to myself. This has always been my greatest fear— but at least in the fantasy, I was rich, traveling, and important.

What is this imposter, though? How do I look at it carefully, at a distance, for its whole being, when I dispense so much of my waking self upon another trajectory— that which I hope to accomplish in my work—my “call to service”? Where do I begin? And end. How do I examine myself when I’m staring at the memo, the phone, the godforsaken subway tunnel all day?

The imposter, as far as I can tell, is this sort of second-self. The one that, in many, likely inhabits the shoulder or kneecap and merely whispers and mutters suggestions of impending failure. It points to pathways of dissatisfaction, of lying to ourselves, of regret, and indecision—pathways we’d look back on later and wish we had never seen the signs for. And though this second-self might point to such delusional realities in ways that are practical and to some extent even helpful, for it is how they are to be avoided at all, this send-self is ultimately to be ignored because, damn it all, we’re Americans and we don’t have to worry about regret! We can do anything, because we’re modern people in the free world! and we can explore whatever roads we want in life, like cooking school, the suburbs, and bicuriosity. This “second self” is no more than a shadow looming on a low day, I suspect. Moaning on a Monday when we want to switch jobs or have an affair or up and move to Dubai six years ago. Maybe that’s what it is, for some.

For me though, this second self is so labeled the “imposter” because it takes over and impersonates the sum of my character. It clutches the skeleton that holds me together pushes me, contorts me, in violating motions so convincing that everyone around me believes that I really believe what I say and do. The words I utter, the messages I write, the enthusiasm in my eyes are all fake, and for my salary, it’s downright cheap for me to sell my soul at this price. So close to resembling what I want to be, and yet so far from being it. That is the essence of deception.

Maybe it’s not all quite so melodramatic. I spend most of my moments with others hungrily pursuing opportunities to move up- to move out- in the world. I seek a sense of centeredness, of belonging, of saying, “Oh, yeah. This is me.” More than that, I am compulsively hunting for a reasonable alternative for the worst-case-scenario I have wandered into through some self-fulfilling prophecy. I search in vain, thus far, for the solution, a resolution to my malcontent. But perhaps, first, I should locate the source.

It’s far less about my skin and hips and sexuality now than it is about my location, my ability to sit still. And the irony, of course, is that I flew thousands of miles to sit for weeks in a Soto Zen temple in Japan to learn that a single grain of rice might be worth setting all of one’s senses upon, if it means snatching the grain of rice in the exact manner in which we intend. Meaning that, if we give ourselves over to something without reluctance, we can find gratification and a symbiosis with that thing in such a way that the search for gratification is thereby over. I learned this in the most clichéd fashion and forum possible. It benefitted me for about a week.

I’ll give you another example. Today, on the subway, I stared at a dog for 30 minutes. It felt like what I imagine acupuncture is like. It targeted something really lost in me. I doing so, I recognized how desperately I wanted to hold it, to pet it. I have only distant memories of what the fury haunches of a Labrador really means to me, and that seems wrong. Such sensory deprivation is beyond criminal. I have become the creature that readily expects a disabled train but not a friendly nod by any stranger. I know the ring of a Toshiba X200 but cannot remember what hot pavement feels like anymore. I am more familiar with disgruntled muttering to myself than I am with naïve optimism.

Even in “public service” I have become a zombie amid my corporeal deficiencies over the course of the winter, in which I spent most of my days under fluorescent lights, in steel chairs (in chairs at all!) and in a state of strange absorption. Others’ words, others’ orders, others’ interpretations of women and sex and the world and many other things I hold dear. Why, then, was I not able to turn my thoughts to my writing at the end of the day and reflect upon what I’d “learned?” Why couldn’t I, at the very least, spew some minor insight beyond an incensed “status” update without further exploration? Why haven’t I, at the most basic level of what we call the names of Zen and Feminism, “just do good”? That’s all it ever asked of me, and I failed. I fail. But it’s likely because I forgot the foundation beneath that tenet.

The first thing to remember in anything that claims to have the interest of others at its core is to care for oneself—to saturate the senses with goodness to further churn the Good. “Inundate one’s compartments for love with music, warmth, and light.” It’s all there, though many of us might misinterpret any experience we have with “Buddhism” or something of the sort as “extinguishing desire” and losing the self completely. But the lesson delivered by my brief conscious (and expensive) practice and my everyday experience of refusing my soul the things it needs most is that, to push the spirit to exist, nourish, and love outside of the body, it must first and always flourish within it. There is no singular “sending off” of the soul onto some vaporous plane of assuredness, accomplishment, and goodness. It is, instead, an appendage with unlimited expanse and reach— if its roots are enduring, nourishing, and fertile.

I’ll break from my “Eat, Pray, Barf” tangent here, but it is actually critical to my point. We cannot discover ourselves or our self-indulgent journeys to the core of our purpose(s), or any sense of peace in my mind if we don’t recognize and cultivate our most basic needs.

That is to say, perhaps sitting at a desk all day writing emails saturated with nonprofit buzzwords with someone else’s signature is not the best way to change how the world sees and talks about rape. Maybe sitting under incandescent tubes all week isn’t as fulfilling as the four weeks’ vacation and health insurance might have us believe. Maybe bullshitting my way through a “practical” graduate degree because it sounds like something people in my field might hire for is wasting more time and money than the goddamn PhD or JD I really wanted but talked myself out of because I was too scared of standardizes testing. Maybe by the time I’m 30 I’ll have hit that maternal phase and none of this will matter anymore because my “kids will be my whole life and no regrets ehhhh!”

And maybe this is all terribly obvious to everyone. But that’s part of living alongside a life-sized parasite in one’s body— it’s so convincing, so articulate, and it knows you so well that sometimes, you forget who is the real Rach. Who is the boss, who lives, and who dies. And who just lies. Waiting to be born. And even as I lie in wait, I fear you will read this, and mistake me.

Chasing Tails, Paper Trails.

“I wanted only to live in accord with the promptings which came from my true self. Why was that so very difficult?”

It has taken me two hours, 4 months, and about 10 years to write this. Even as I begin to type, I can feel the surge of expression clinching in my throat and sifting back down into dislocation— or perhaps fading, not unlike the lucid nightmare that we forget shortly after waking. A stillborn dream, sucking the calcium from my teeth and then expiring. Back to dust and mixed metaphors.

But it’s worth trying. That’s what I’ve been telling myself in the decade that I have tried to leave the paper trail of my soul- not to anyone precious enough to wade through it or traverse down it, but rather, to something more ethereal that might alter my karmic nature. This sounds, of course, pretentious and grandiose, and that is why I have not articulated it before. And I am starting to think that the silence is more to my detriment than the impending criticism from my real and imaginary naysayers.

I have not written for fear of failing to perfectly articulate myself. The breadcrumbs of my lifelong polemic lead from misanthropic discomfort to foolish anger to inescapable codependence. I have spoken out, to be sure. I have updated my “status” (what is my status?) almost compulsively since a platform for it existed for it. I have complained, shown righteous indignation, and all the while searched in vain for some practical, lucrative, and “secure” way of channeling my otherwise seething outlook on the world. I have mustered my inner megalomaniac and determined I have no choice—no choice!— but to defend my personal and improvable perception of what’s worthy and deserving in the world. Hence the venture into public service. But I have not written for fear of being wrong, for fear of regretting the permanence (are words permanent anymore?) of my thoughts, for fear. I have found every way possible to live a life that resembles what I want, but in so doing actively avoids what it is I want. For fear, and that is cowardice. That is, if my perception of the world and desire to alleviate suffering has any relative merit whatsoever, I am a coward for hiding behind the institutions that, in complicit fashion, position me as an advocate for any cause. Yes, it’s true. I have not written for fear, and this is the greatest offense not only against myself, but against the very karmic nature I am speaking of— my choices themselves spring from complete self-absorption and end with them.

Which is another problem. Aside from the fear, I like to think of myself as this tool through which good might be wielded. The problem there, of course, is that I think of myself first, and the Good second. I want to do it all perfectly: find the ideal role through which I might help people, fill it in the right capacity, fit the proper gaps in the universe in manner of some martyr so that I might be absolved of my (let’s face it) yuppie angst and liberal guilt— and all with great benefits and job security.

That’s not to say I don’t genuinely care about people. I do. Except for the general manager of the MBTA. He can take a long walk off a short pier.

But all this is to say that one thing has become glaringly obvious to me this year. And that’s that I’m not happy. I appear to have too many windows in my mind open at once, and the cross breezes of my consciousness relentlessly cast the unfortunate circumstances happening around me, my participation in them all (great and small), and my obsession with averting regret (and thereby risk) makes for a very unfortunate future in my mind (and present, for that matter). I am debilitated by fear and indecision and all in the fragile guise of a “go-getter” dedicated to the public interest. I volunteer! I started grad school! I make shit money in a neat nonprofit! I’m good, right?

Maybe what I’m really going for, since I can’t clearly see what it is I want without flinging myself around like a pinball at the prospect of standardized testing, exhausting hours, and low wages, is to just have someone tell me that my interest in the public interest is satisfactory enough. Perhaps my real dream is to be eulogized in some awesome tragedy in manner of Marlowe, the Greeks, or Michael Bay. Now that would make an impact.

So why is it, with all of these opinions, substantial grammar skills, and the faculties to at least detect wit and humor, that I can no longer write? Why is it that, despite being housed for most of my waking life in an office that spouts the feminism I live and breathe, I cannot sit and tell you about it? Why is it that, despite living my dream of a paid teaching position, I cannot stand and deliver? Why is it that, despite two years of vetting the “next step” in my education, I’m desperately unchallenged, unsatisfied? Is it me? And worst of all, if my priority truly is the interest of the public, why have I already referred to myself in the first person in this piece more than a dozen times?

It could be circumstantial. Sure. For days, I could cite circumstantial reasons for my dissatisfaction and recite a yarn of convincing and acceptable excuses- for my fears, my pitfalls, my ultimate failure to discover and truly be what I want (what is that, again?). I could say that 2011 has been tainted by my beloved Nonna’s unexpected death, an emergency surgery, the unforgiving cancellation of my already floundering graduate program, my family’s brave but failed attempts at “recovery,” and my year-long displacement from a real home, to say the least, is disheartening. But it always has been. I could list all of these things, and do, here, as I have been reminded to by countless loved ones. (I should take a moment to pause and appreciate that my recent and crippling fear of failure in my vocation has helped to alleviate my fear of being abandoned and alone. Score one for the codependents.)

But to list these excuses is deeply unsatisfying, and only magnifies the menacing cloud ahead of me: if I am unable to withstand the challenges of independence, which come with the pursuit of doing good- real good- in the world (what’s real good again?) then I might as well give up now.

(To clarify, the sorts of things I consider “giving up on” include, but are not limited to: my dream of changing the cultural perception of sexual violence against women; my goal of doing so through the written word and oration; my hopes of pursuing an academic track in law, public policy, global health, or some other related field; ever taking the GRE because I am terrified of math; ever being able to spend more than two hours alone without calling someone; ever being able to afford to grow old; and relationships in general.)

Remember that show “Eek! The Cat”? Wasn’t he afraid of ham sandwiches? Well let me you, I was petrified of that show. What’s that say about me? Enough about me- what do you think about me?

Back on topic. I’m yellow in that I answered the phone between this sentence and the last one because I can’t say “no” to the prospect of being sought after by someone who shows interest in me. Mostly because I am afraid of the consequences of not clutching to another concrete thing outside of myself when it reaches for me, and of painful consequences in general. Such things lead to involuntary solitude. Abandonment, as I said. I previously tolerated negativity and misuse from others because I feared the alternative, and now surround myself with good folks who might not know that I chew my fingers wondering what I’d do without them.

Why am I afraid of rejecting attention, even if it’s poorly timed or placed? And does it really matter? I used to think so, but the more I’ve “dealt” with it—the “my parents are to blame” model of self-actualization—the more I’ve questioned what other areas of my life besides residual adolescence are at the detriment of such a pervasive fear, and where it manifests in my self-perception and interpersonal dynamics—you know, outside of the “I hate my mom and dad” one.

Turns out, everywhere. Or maybe that’s part of the obsessive compulsion to self-analyze. Either way, it’s become a full-time job alongside my full-time job, part-time education, and feeble attempts at building a successful present and future. It is ironic and counterproductive in that it is equally exhausting to recognize a pattern of behavior and all but completely fail to break out of it. I expend most of my energy each day acknowledging that I say “sorry” too much, that I feel subverted by working and writing on behalf of other professionals without ever increasing my own skills, that I lack complete confidence in ways I never have, and yet, I do not have the energy or resources or wherewithal to combat (or perhaps accept) my current self. I thought that three years of immersing myself in the culture of “what I want to do” would make me more confident. But the truth is, I resorted to writing this in order to avoid preparing for my lecture tomorrow. Maybe I’m just not mean to teach. But more likely, I simply have lost my voice to a strangler in the work-a-day world.

Thursday, February 10, 2011

let your poison choose you.

They said that you’re the one

but we don’t give much credence

To the voices behind the ice

Or the poison that drowns them

anymore so I don’t tell you.

They were prophets

And made a megalomaniac

Of me and now we know the crystal

They throw is not a ball, has no shape

for soothing at all.

Just a plastic vessel for their disease

The idea, the shape of emptiness

Waiting to be filled.

But still, with it I tell the future

To you now, each night.

Inherited the practice, I did

To look into the glass

Predict your sorrow

And mine

For silver



this cabin

Of gypsies, beggars

And thieves.

Wednesday, December 15, 2010

Things I need to do in the next week:

  1. Find out my grades for the semester
  2. Prepare for best holiday dinner party ever hosted in the Jape:
    1. Prepare 25 spinach and mushroom cannelloni stuffed with garlic, goat cheese and ricotta
    2. Make 5 dozen of Nonna’s taralli
    3. Figure out how the hell to pull off matzo-ball soup for 25 people
    4. Buy 3 bottles of champagne for blackberry basil bellini… and make it
    5. Buy peppermint schnapps for scratch hot chocolate and mint liquor
    6. Clean apartment
    7. Have amazing dinner party with screening of best Griswold film ever
  3. Go to New Hampshire for 3 days: sleeping, “skiing”
  4. Do all of my Christmas shopping
  5. Work
  6. Go to NYC for 3 days: see movies, go to museum, see Schley, ice skate, have fabulous food
  7. Take mother to dinner and to see local production of “A Christmas Carol”
  8. Buy all ingredients for Christmas meal, to include
    1. Roast Chicken
    2. Roasted vegetables, including carrots, celery, onion, fennel, and potatoes
    3. Pastina (Christmas soup) with mini meatballs
    4. Stuffing
    5. Mashed Potatoes
    6. Green bean casserole
    7. Creamed Pearl Onions
    8. Taralli
    9. Pizzelle
    10. Apple Pie
    11. Chocolate Coconut Layer Cake
    12. Cheesecake
    13. Champagne cocktails
    14. Whiskey!
  9. Go to parents’ house, cook entire Christmas meal
  10. Celebrate holiday with graceful air, no stress, and relaxed disposition


Friday, November 19, 2010

Follow Up

Strange timing, but Judd Apatow, who I essentially indicted in my most recent post, was being interviewed on NPR's WBUR today. So I called in and got through, and talked to Mr. Apatow himself. I decided to hear straight from the horse's mouth just what he had to say about the portrayal of sexual violence in his films.

Unfortunately, the horse wouldn't let me ask my actual question.

You can listen to the interview by clicking on the link below. His responses were utterly shallow, short-sighted and disappointing. But not surprising.

Wednesday, November 17, 2010

Drunk Bitches and their Pimpin' Mistakes: Rape's Historic and Current Place in Western Narrative

Rape a tool of female and community oppression has been prevalent in the western narrative for millennia and its value as a symbol, illustrating the necessity and gaining of power by men, has transformed in the twentieth century, albeit subtly so. While modern interpreters of such texts might assess rape as a symbol of seizing power at the expense of an individual (woman, historically), it is all too easy to dismiss both the myths themselves and their analyses as obsolete products of their times. Closer examination of both the historic context and development of rape as this emblem for male power, however, reveals that its evolving meaning is as relevant as ever in the twentieth and twenty-first centuries. While simple analyses portray this taking of power as linear— moving from victim to perpetrator- the act and significance of rape for women, their communities, and the art that reflects them, requires further assessment, particularly in a contemporary western context, where women’s “equality” in sex is superficially valued and mistakenly considered achieved.

Rape’s connotative significance has and continues to pervade popular narrative form and media, veiled as a plot device in popular fiction, as comedy, as euphemism, and its current place as a “women’s issue.” These forums shape common misconceptions perpetuate rape as an omnipresent tool for oppressing women. The lack of violence often portrayed in popular fictional narratives in turn labels “real rape” as synonymous with gratuitous violence. No matter what the differences in cultural uses and perceptions of rape, men’s acquisition of power is almost always achieved at the expense of women. Realizing that rape’s multidimensional symbolic meaning changes over time and space, it is crucial to evaluate current conceptions of sexual violence against women in the United States from historical keystone texts, its nebulous place in current events, and its increasing but concealed presence in popular art today.

To understand contemporary interpretations of rape and symbolic value in the western world, we must at least briefly establish its role in critical texts from more than two millennia ago. Widely remembered, for example, though not regarded commonly as a violent exchange in the Hebrew Bible, rape establishes women’s place as currency exchanged for freedom and power in the story of Lot and his daughter. Similar examples match this stage-setting illustration of rape, spanning hundreds of years. Persephone’s rape in Ovid’s Metamorphoses, for instance, indicates to readers that the sacrificial lamb’s virginal undoing is honorable and even necessary, although tragic. Much later in popular myth, but equal in its willingness to dismiss women as accessories to the complex issue of male power dynamics, rape is centrally depicted in Harper Lee’s To Kill a Mockingbird. These texts are only a few in the thousands that have used rape symbolically in their efforts to address practical social, spiritual and political issues as they pertain to men. Thus, the historic and current significance of these texts have unquestionably shaped the way that literature and art view and use rape as a pliable symbol of power among men at the apparently inconsequential expense of women. In contemporary contexts, the status of rape as solely a women’s and human rights issue demonstrates how we reinforce its symbolic value today in our own social, spiritual and political spheres. Rape as a gendered health emergency— indeed, more than 90% of victims identify as women— is widely, inaccurately depicted as a strictly social force in U.S. media through television, film, and the internet in the United States (Franklin 2010). In a culture with the second largest film industry in the world and where pornography comprises the highest grossing industry in the country, the work of top contenders in the narratives forum via sex and entertainment wields unparalleled power.

Despite what American perceptions of “real” sexual violence do to reinforce the historic connotative meaning of rape, however, the symbolic value of sexual violence as a power acquisition by force is actually rejected within both the justice system and industry in the United States. Where women are allegedly treated as “equal” to men, and are granted greater sexual liberties, rape in the U.S. is rarely represented in modern narratives as a violent, gendered struggle in power dynamics. What, then, does rape symbolize in contemporary texts, as it continues to claim the safety, minds and bodies of 20% of women in the United States (Koss 1988)? Likewise, what is rape’s symbolic place now in the American metanarrative, as it is embedded frequently in pornography and the film industry’s top earning films?

This analysis is best begun with the existing literature on rape in the United States. Statistically, less than 3% of reports of rape will lead to a conviction of the defendant (Vickers 2007). Of reports filed by victims, between 2% and 8% are determined false. However, surveys of jury panelists report believing that up to half of all reports to law enforcement are false. This is particularly true for survey participants when questioned about victims who were intoxicated at the time of their assaults, the majority of which occur on university campuses (Lisak 2008). In these environments, where law enforcement often instructs victims to utilize their administration’s adjudication processes, it is estimated that fewer than 10% of all claims of rape are investigated or treated in the context of disciplinary hearings (Traywick 2010). More often, the victims and defendants are treated “equally” in mediation sessions facilitated by administrators—the very same who report their institutions’ rates of violent crimes to college boards annually. Popular constructions of rape reflect “equality” similar to that which American popular culture cherishes in granting equal sexual liberty to women and men: women are equally culpable as men in these acts of violence— if one dare call it violence. It can be surmised, then, that within the U.S., rape is not simply regarded as a unilateral act of violence, but rather, a mutual (though perhaps regrettable) act of sex by both parties, in the event that the “victim” has not sustained visible injury, as she must in order to be regarded as victim. This new symbol of women’s sexual culpability, conjoined with the image of historic unreliability, is thus revolutionized in a victim-blaming model, found in popular film and media, the narrative forms which attract the same university-age victims and perpetrators as their target audiences (Armstrong 2006).

The catalogs of admired film makers such as Judd Apatow and Seth Rogan, for instance, are no exception. Their careers in film have used rape contained in the context of mixed messages by women, unreachable female caricatures, and playfully innocent “drunk sex,” facilitated by their male protagonists. These top figures in the industry are the producers, or in some cases the actors, writers and directors of top-grossing hits such as The 40 Year-Old Virgin (2005); Superbad (2007); and Observe and Report, (2009)— the popularity and success of which cannot be challenged. Troubling, though, is that every single one of these films uses sexual violence against women as fodder for comedy and as plot device, without addressing the act’s symbolic value, which is only increased by the successful production of the films themselves.

Rogan’s 2007 hit Superbad illustrates rape’s current place as a gray area mired in women’s elusive sexuality through its importance in achieving the goal of its male protagonist, Seth: alcohol-facilitated sex with a peer. To quote his character’s view of alcohol-facilitated sexual encounters, he states early in the film to his friend regarding purchasing alcohol for an underage female peer, “Yeah, man that will be pimp! That way you know she'll be drunk. You know when you hear girls say 'Ah man, I was so shit-faced last night, I shouldn't have fucked that guy?' We could be that mistake! However, it must be noted that the film itself never explicitly refers to the protagonist’s method of achieving sex (intoxicating the victim to incapacitation) as rape, which is literally the entire plot of the film. Here, the female target is regarded by the protagonist and his dubious friend as too confusing to understand, too difficult to reach, and ultimately out of [his] league. Implicitly, incapacitated sex with his target is necessary and forgivable, as she states later in the film, and as audiences and critics reflect in their high regard for this “romantic comedy” (Rogan 2007). Here, rape is not a violent act of desperation or seizing power, but merely an exchange through which the playing field of sex may be leveled.

In every other popular film mentioned above, too, similar portrayals of these unreliable and ultimately dangerous sexual beings are achieved not in female characters’ supposed dominance over their male predators, but in their willing participation in self-incapacitation and submission. The filmmakers succeed in depicting their ideal blend of masochistic and subordinate women through the symbolic value of rape implied as premeditated, attempted drunk sex. In The 40 Year Old Virgin, for instance, the protagonist’s group of three male friends explains the most successful tactic in selection the right “drunk bitches”— not too intoxicated to walk, but just enough to weaken their decision-making (Apatow 2005). Such a tactic and its popular reception by producers, fellow filmmakers, audiences, and women further intensifies what rape, embedded in more innocent terms, stands for in contemporary contexts. It makes women accountable—“equal”- in this supposed exchange of power, and therefore eliminates any opportunity for any women to be victims at all.

If rape as a symbol of power-acquisition between men and women or between men (using women as the tradable commodity) is regarded as obsolete in the United States, low reporting numbers among women 15-24 and the representation of rape in popular media illustrate an undeniable correlate in attitudes about violence against women (Baugher 2010). Whether the symbol reinforces the social construction or merely reflects it, sexual violence is undoubtedly among the most complex women’s health and rights issues around the globe. Therefore, its symbolic value—that is, how we treat rape- must be scrutinized. Its meaning and place in shared realities of violence change not only over time, but especially by whom it is observed and condoned. Rape, considering the myriad factors and influences under which it takes place, is never an act easily understood. This begs the question: what would rape look like in the American narrative if it were finally acknowledged as a domestic problem, a health issue, a war crime, and a not simply playful misunderstanding among confused youth in the status quo?

Friday, November 5, 2010

Skin. Deep.

Maybe the problem is that I’ve always had too my time and/or energy to think.

I got some scary news from my doctor the other day, and it got me to thinking.

Nothing life-threatening. Or even “now-threatening.” But something else is looming over me— something I used to write about often, as women do, because we’re asked to by the societies that impel us to internalize failure. What’s looming is the question of whether I could really love myself, my body, unconditionally. But I suppose I should back up and ask what begs the question…

At 7, I was “diagnosed” (and I use quotes to try to diminish how self conscious I am about using such a dramatic word) with psoriasis. The name of the condition itself makes me cringe, and having explained it to people for nearly two decades now still fills me with shame. First, because of what such a condition does to the body, in appearance and otherwise. Second, because it is largely regarded as a “cosmetic” condition, and nothing more. So despite my being questioned about my appearance often as a young person, I often felt like I was proclaiming to have, in the minds of others, something as important or life-altering as freckles. Although I was often treated as (and indeed labeled) a “leper” due to the appearance of my arms, legs, neck, and forehead by my peers and even elders, the professionals who were intended to provide support for the disease (yes, some even call it a disease!) shrugged off the condition as merely topical, and not “beneath the skin.” But I was in elementary school, and so for a child, you don’t really need to dig so deep to make an impression. Needless to say, it took me until my early twenties to realize the impact such a cosmetic disorder (I have never in my life heard of or met anyone my age who suffered from the same thing) could have. Aside from the appearance and infrequent physical pain (i.e. cracking, bleeding) that it caused, it was how I internalized the treatment I received from others that shaped how I loved (or didn’t love) myself.

Setting that aside for a moment, we can fast-forward to my late teens. Having “accepted” my situation and “rejected” others’ opinions of my physical appearance (and though still crippled by the fear of rejection), I unexpectedly found a doctor with a miracle drug called Infliximab, or Remicade, for short. Although he specialized in gastrointestinal disorders and treated patients with Chron’s and Colitis with the same drug, he found that other autoimmune disorders, like psoriasis, could be temporarily pacified by use of this drug. He promised, as no other ever had (and we’re talking everything from top-ranked dermatologists to holistic healers, here) that he would “eradicate my symptoms.” At 17, with a prom and senior photos pending, I naively placed my trust in him. I’ll even go so far to say that I remained willfully ignorant of the potential downsides of this drug. Finally, someone had made the leper an offer. How could I refuse? Until recently, I thought the story really would end there. He made good on his word, and for a mere $7000 a month (thanks, HMO), along with several hundred milligrams of intravenously infused TNF-alpha inhibitors, I was “cured.” I could finally see my body clearly. Clear. I could love it, finally.

So I continued, for seven years, to spend 2.5 hours every 6 weeks receiving my “treatment.” That’s what we called it. When I got a job after finishing my undergraduate degree, I continued to drive the 50 miles from Boston to ensure it was his offices that treated me, because they were so nice, and because I knew them. They hooked me up, they put on a movie. They had wi-fi. They even gave me lunch on occasion (provided by some man or woman in a suit shelling out Panera Bread like it was currency, strangely) and so I never gave my long term health a second thought. I didn’t even consider the possibility that Remicade might be making me sick, despite my knowing that it can make one prone to upper-respiratory infections on occasion.

I didn’t entertain the idea that I might be so tired for the past two years because we changed my schedule to be “treated” less frequently by simply “upping” my dosage when I seemed resistant to the prescribed amount. I never questioned why I didn’t receive the obligatory TB tests other than my first one, in 2003, or why I haven’t had an actual appointment with my doctor in more than three years. I never questioned any of this until I saw a new doctor, out of convenience’s sake, last week (I don’t have a car any longer, so taking a whole day off work to travel 100 miles round-trip by train was starting to seem daunting).

This new Dr. performed tests I’d never heard of. He asked why I hadn’t been recommended or referred to see a dermatologist in almost eight years. He raised his eyebrows and immediately voiced concerned when I named my current dosage: 800 mgs per 6-8 weeks. That, he said, is the maximum dosage he’d give to someone in their later or latest years—not to a young patient with decades of potential treatment to go. He was shocked to realize that the only “chart” sent over by my previous doctor read only one line “DiBella: treated March 2008.” That was all. He said we need to pull back. He said an appropriate dose for me was roughly half of what I’ve been receiving, and that a continued dose at my current level hugely increases my risk of Leukemia and Lymphoma down the road. He said these were required warnings by the FDA, and the company who manufactures Remicade itself. Why, then, had the word “lymphoma” never been uttered to me?

I should mention that there is good reason, in the case of some young patients, like those with Chron’s, to provide higher doses of a drug like this. Their pain, the damage to their GI tracts, and the short-term quality of their lives depends sometimes on this treatment. I at one time would have indubitably agreed with regards to my “cosmetic” condition, which only in hindsight I realize caused me such trauma. It’s a drug I’ll continue to use for now, but this issue is really only the springboard for so much else with which I’ve been confronted lately: I’ll have to stop at some point. If I get pregnant, ever, I’ll have to stop. If I get sick, I’ll have to stop. If I move to a remote place that doesn’t have access to professionals who can administer the drug, I’ll have to stop. I guess what I’m asking is, will I have to stop loving myself again? This question is raised for me, I’m sure, because I’m now performing a three-year sociological critique upon the status of the U.S. healthcare system and its treatment of women. I’m also participating in it. We live in a world that I’m beginning to believe makes us and keeps us sick.

Instead of cures, we’re given consolation. When I tried to research what I could about my now-increased risk of blood cancers, most of what I found was either sugar-coated by the drug companies themselves, hidden in the fine print of practitioners’ websites, or amplified by personal injury and medical malpractice attorneys encouraging me to get sick so I could sue. In the end, it was kind of laughable. In the end, I realized that, if it weren’t for the environment in which I’ve been inculcated for 24 years, and which pushed me to seek this “treatment” in the first place, my situation truly would be “cosmetic.” It is not the disorder, but rather my socialization as an untouchable that made this thing, which I have hated my whole life, and which made me love myself only conditionally, that created this.

But who is responsible for the socialization? Am I, because I can self-actualize? My elementary school peers, who sparked my self-consciousness? The drug companies who profit from our self-loathing? Our ancestors, who constructed it? Who? Name it, so I can look it in the face before I have to face the real me again—the me who will inevitably be revealed in ten, twenty, thirty years. Too soon.