10 December 2008

BIOGRAPHY : Delusions & Disfigurement

The past six years have been marred by treacherously tumultuous hilltops and lamentably low, vehemently voracious valleys, all a torrential watershed result of my HIV/AIDS diagnosis in early 2002, which catapulted me into a stormy sea of relentless depression that has not ceased to drown me time and time again since temptations of suicide came creeping into the forefront of my thoughts.

Highlighted escapes from this extended, ongoing depressive period have to be my one-year scholastic sojourn abroad, when I studied Graphic Design and the Italian language in Florence, Italy at L'Instituto delle Belle Arti - Lorenzo de'Medidi, and my first two years in San Francisco, CA, when I was deeply involved with HIV/AIDS activism/advocacy and the theater arts. In Italy, I succeeded academically and was awarded highest marks for all students in my classes, winning first runner-up in the student design competition for my brand/logo design of invitations and brochures for the student art exhibition at the end of the year. Thanks to my innate capacity with language learning, I also advanced from third level intermediate Italian to eighth level advanced after only one semester of study.

My arrival to San Francisco, after Italy, was a difficult one, for I had no money, knew no one and was encumbered with all of my earthly possessions (i.e., three suitcases, a duffel bag, a carry-on, a laptop computer, a 35mm camera, a portfolio, etc.). After two weeks of meandering from one anonymous gay abode to another, sleeping on strangers' couches or in their beds, I linked up with a HIV/AIDS youth advocacy organization (i.e., Bay Area Young Positives) and a homeless/runaway youth advocacy organization (i.e., Larkin Street Youth Services). The two organizations together linked me to free medical care, free food, free housing and resources through which I was able to begin the process of applying for Social Security Supplemental Security Income (SSI).

Immediately after getting situated in my own Section 8 subsidized studio apartment (through LSYS, Tenderloin Neighborhood Development Coorporation [TNDC] & SF Housing Authority), I signed up for the "Hire-Up" Employment Development Program and the HIV/AIDS Prevention & Care Services Internship through Larkin Street, during which time I interned at Magnet Gay Men's Health Center in the Castro and became the first HIV-positive youth advocate member of the San Francisco Department of Public Health AIDS Office HIV Prevention Planning Council. Peter Carpou, the Art Programs Coordinator for Larkin Street and a member of the Board of Directors for a small, but very well-reputed alternative arts/theatre space organization in the San Francisco Mission District, call the Intersection for the Arts, awarded me a full scholarship to participate as the only amateur performance artist in a program there called "The Hybrid Project," where I studied in an ensemble setting the contemporary arts of acting, dance and spoken word or hip-hop. Combined, all of these activities kept me very busy and engaged, so busy in fact that I wasn't paying much attention to my deteriorating health. I was, however, regularly practicing yoga and seeing an acupuncturist as an alternative to medicine and as a way to keep my health primed.

Come to find out, a meek and measly common cold that I had let go unnoticed, had progressed into PCP pneumonia, and the night of the final performance for "The Hybrid Project," I got a major, wrenching pain in my neck (apparently from stress and too much activity). After the performance, I went home and stayed up all night practicing yoga, trying to get the creek out of my neck. At 6:30AM the next morning, I even went into my local gym to participate in the supervised yoga class, but the instructor was not there that day. The gym personnel opened the studio for me anyway, noticing that I was in dier need of some relaxation, stretching and exercise. I then continued to practice yoga there for three hours, until, when I was releasing from an upside down back bend, I felt my neck crack into a line straight against the studio floor.

At that moment, I saw a bright, glowing, blissful light and a tree with three branches and no leaves (a scenic device I recognized from Beckett's Waiting for Godot, which I had studied extensively in college). I was having an enlightened, spiritual awakening. I cried tears of joy and giggled in delight all at the same time. It was a beautiful experience. Then I left the gym and walked the streets of the Tenderloin for what seemed like hours, until I found "Felicity Fetiches," a lingerie & fetish boutique that sold drag-ware. I went in and spent five hours there, trying on various drag ensembles and discovering my hidden, unrealized passion for the transqueer art of drag.

After that, I went home, ransacked my studio apartment looking for God, and letting myself believe that I was a "Gift from God," sent to the world as a young AIDS-stricken, drama queen, gay prophet to announce salvation for the world's sickly and the second coming of Christ. I was experiencing a schizo-delusional psychosis that proceeded to last six months, until the pneumonia was defeated and I found the right combination of psychiatric medication to counteract the psychotic tendancies.

The psychosis continued until January 2005 and then was followed by a year-long, very serious bout of clinical depression. I became overr come with greif and anguish, wanting so badly to once again experience the bliss and creative enlightenment of my delusions but not wanting to lose my mind. While I was in the hospital for the pneumonia and the psychosis, my doctors were convinced that my sickness was the result of excessive use of crystal methanphedamine, but I swore up and down that I had never used drugs before in my entire life. I attributed the psychosis to the infilitration of HIV into my brain resulting from the tantric yogic experience I had had at the gym that one morning post-performance.

Unfortunately, the doctors continual heeds that I was a meth addict intrigued me about the drug. When I got home, after the psychosis was finally over and I had regained a sense of reality, I immediately began to seek out the drug, in hopes of reinstigating the blissful delusions. I found an attractive gay man who offered me crystal meth, and I was introduced to surreally intense sexual experiences. I immediately became addicted. The sex was incredible...unbelieveable, but the feelings of euphoria did not last. Eventually, meth just became an escape from my depression, a way to ignore my problems as I hoped again for the delusions to return. They never did.

In January 2006, I was going through withdrawal and the effects of my depression were seriously heightened, to the degree that suicide seemed a simple and easy way to end my suffering. I realized in a moment of saving grace that it was not the meth or the depression that was keeping me down, but it was my inactivity, do-nothing-ness and boredom that was troubling me. At the bequest of Curtis Moore, Executive Director of B.A.Y. Positives, I applied for a job as Administrative Coordinator with Folsom Street Events™, the producers of San Francisco's no.# 1 public event / street fair: the Folsom Street Fair™, as well as Up Your Alley® & Magnitude®. Because of Curtis's professional recommendation and my sterling interview skills, I was immediately hired for the position and began working there on February 3, 2006.

My career at Folsom Street Events lasted only a year, because I was letting my addiction and my deteriorating health seriously affect my job performance. On January 31, 2007, my employment there was terminated, but only after I had single-handedly grossed record earnings for FY2006, independently achieving a 115% rental sell out of the FSE Exhibitors Division, acheived superior standards for in-house desktop design of vital publications (e.g., Sponsorship Packet, Invoices, etc.) and independently produced a pivotal celebratory event with over 135 attendees: the 2006 Beneficiary Awards Reception, implementing striking innovations, including with regards to venue coordination, catering, invitations, entertainment and awards.

After working for Folsom Street Events for a year, I again fell deep into a cataclysmic depression which eventually lead to my deteriorating health. Just after my birthday, on September 18, 2007, I experienced once again what seemed to be an insignificant common cold, so I didn't go to the doctor's office with concerns that I might have a problem. The illness lasted 2 weeks, until one night while I was watching Robin Williams on Late Night with Conan O'Brian, I feel asleep and didn't wake up for what my doctors now estimate was between 10 to 12 days. I had PCP Pneumonia, was deathly ill and fell asleep unconscious to the world until I was discovered by the San Francisco Fire Department on October 7, 2007, when they came and busted down my door.

My Larkin Street Youth Services Residential Case Manager, Liz Longfellow reported me to the Fire Department missing or dead, as she had not heard from me in three weeks, and I was not answering my phone. The Fire Department discovered me in my bed, face down in a pool of my own blood and urine, my face blacked by a severe, necrotizing bacterial infection and my teeth falling out. The rushed me to the hospital where I stayed for four weeks in a coma. During the coma, the doctors at Saint Francis Memorial Hospital tried to defeat the pneumonia and control the bacterial infection but were unsuccessful. They then decided to transfer me to USCF Medical Center for an emergency debridement surgery, to remove the necrotic, infected skin and bone of my face.

The debridement was successful at eliminating the infection, and two weeks later, I woke up from a coma to discover a giant hole in my face. My mouth and nose had been amputated, and thus began the tedious, heart-wrenching, horrifying and lonely period of waiting for multiple maxillofacial reconstructions. On January 30, 2008, I was transferred from long-term, acute medical residency at Laguna Honda Hospital & Rehabilitation Center to San Francisco General Hospital for the first and most significant of my nine-to-ten facial reconstruction surgeries. A team of plastic surgeons, headed by UCSF Professor of Surgery, Dr. David M. Young, set out to begin reconstructing my upper mouth, by removing a large 12"x5" slab of flesh from my lower left leg and a piece of bone from my fibula and grafting it onto my face. This surgery kept me in intensive care for two weeks. The pain was severe and intense; I could not move out of my bed, sit up, turn around or lay on my side. There was a pouch connected to my chin and my leg by a plastic tube to collect blood and drainage. I was connected to a live-feed morphine drip that I could activate when ever I needed pain relief. I used it as if it were candy. Then I was returned to Laguna Honda Hospital, where I continued to recieve morphine injections for one month and remained bound to a wheel chair for three months.

On April 18, 2008, just five days before my second operation, I was released from Laguna Honda Hospital to return home to my studio apartment, where I would be receiving in-home nursing care three times a week, through until the end of my acute recovery. The second surgery was a mere "revision of the flap" and was not cause for much pain or suffering. The waiting period until my third operation: a "first-stage nasal reconstruction with forehead flap to nose and possible cartilage from either ear or chest," was the worst. The surgery was postponed three times due to unforeseen circumstances (i.e., a life-threathening emergency with another patient and a death in the family of my new plastic surgeon), and during that time period, out of sheer reluctance and bored, I turned once again to crystal meth to quell my worry and anguish.

On September 15, 2008, I finally had my third reconstruction, which was a great success (according to the doctors), albiet leaving me with a severely disfigured visage: a sausage-like flap of skin hanging from my forehead down the length of my nose and a noticeable scar and severe open wound on my forehead. My fourth reconstruction: a "second-stage nasal reconstruction with cartilage from either ear to form left nostril," would have been scheduled for October 23, 2008, were it not postponed after I told my surgeons that I was a crystal meth addict, and they gave me a urine test. The demands of my doctors, concerned that the cartilage graft would not take if my immune system were further compromised by drug abuse, were that I remain sober for one month before my surgery could be rescheduled. I have made it through one month and 27 days of sobriety. By the time of my next surgery, now scheduled for December 22, 2008, I will have been clean and sober for two months and ten days. That's quite an accomplishment, seeing as how all the monotony and terror of waiting is extremely trying on the psyche and is quite a trigger to use.

Since I awoke from a coma in November 2007, just before Thanksgiving, life has been marred by significant, earth-quaking tragedy for me. I am frightened by what I see in the mirror every day, and according to my doctors, who say I "will never look normal again. People will stare, but you will psychologically adjust," my face will always be a little horrifying to look at. I rarely go out in public, and when I do, I always were a surgical mask to cover up my unsightly visage and a scarf to cover up my tracheotomy tube, so innocent but cruel, curious but insensitive bystanders won't stare and ask questions, but; nonetheless, they do stare and make comments, and I just shrug it off, return home and cry myself to sleep in the dark, with my shades drawn and the lights off, so even I can't see my horrifying face.

I have however been blessed to be involved in a portrait arts project with a professional artist I met while she was in residence as the Visiting Artist and facilitating a print-making workshop, "Drawn Together," at Laguna Honda Hospital. By participating in the "Drawn Together" workshops at LHH, I was able to create some beautiful, original floral prints from rubber block stamps that I fabricated into professional style, hand-made stationery.

Helena Keeffe has lead me through a creative process of exploration and discovery in which I have been able to grapple with the demons of my disease and disfigurement, intimately confronting the contours of my deformed, injured face. The portrait project has been a healing process, allowing me to come to terms with my tragic experiences and to learn to appreciate better the beauty I have within me. The designs we collaborated on (i.e., photographic portraits & sketches), along with an audio recording of my oral history, will be exhibited in a window kiosque at the enterance of the Plug In ICA (Institute of Contemporary Art) in Winnipeg, Canada throughout December 2008 & January 2009. I am looking forward to how the project might further develop past this exhibition and into the future. I know that the entire process has been integral to my recovery, and I would not want to lose the opportunity to continue working with Ms. Keeffe.

Every day, I am faced with the forbearance and frightfulness of facing disfigurement, and I am challenged to calmly overcome the calamity of damnèd chemical dependency. Life is a harrowing struggle of sanity versus sanctity versus solemnity & single-mindedness. Life is frightening and foreboding. I am fearful of another mighty fall from grace: the lack of fortitude or my succumbing to fragility and feebleness. But, I am, above all things else, a survivor! My dysthymic, bipolar, alcoholic estranged mother says she is proud of me, no matter what I may have lived through. She says, "I do not judge you. I love you too much to judge." Perhaps it is that type of love that I am longing for; love that could be rewarding, healing, happy love: the foundation of a new and long-lasting relationship based on complete empathy and understanding and discretion and censure, again with a mother who once for so long forsook me. With or without that kind of love, I will survive beyond the deformity and illness, to discover once again that which is beautiful inside me: my potential for good, as a "Gift from God."

24 November 2008

Craniofacial Reconstruction : Facing Flaws!

The following is a comment I posted on a surgeryencyclopedia.com article on "Craniofacial Reconstruction." This is the original, longer version, over 4,000 characters. For the shorter, posted text, CLICK HERE! & scroll down to the bottom of the page.
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In early October 2007, I was found alone, unconscious & half-dead in my studio apartment in a pool of my own blood & urine. My face was blackened by an AIDS-related necrotizing bacterial infection. My teeth were falling out. I was rushed to the hospital where I remained in a coma for four weeks, during which time my upper mouth/jaw & half of my nose were amputated to rid my body of the incurable infection & to save my life. I awoke from the coma with a giant hole in my face & with no recollection of my near fatal experience.

Since January 30, 2008, I have begun the long, arduous, drawn-out process of multiple craniofacial reconstructions. Upon writing this entry, I have had only three operations out of what possibly could be a total of ten to twelve facial reconstructions to replace my nose & mouth. All the while, I have been experiencing quite a frightening roller coaster of emotions: repetitive depressive cycles which denigrate my psyche and bring my mind to such low depths that even suicide seems an easy remedy to this suffering.

Before my first surgery (that is: after the initial debridement & after living with a massive hole in my face for three months), I asked my surgeons most of the questions that this article recommends to ask. My doctors had only blunt, cold, clinical, inhumane answers to questions that were for me as emotional as they were life-altering. They said, "You will never look normal again." "People will stare...You will psychologically adjust." When I asked them if I'd ever be able to smile again, they responded with a long, awkward, silent pause, and then they said stoically, "You WILL be able to express happiness." As if that was any conciliation!

You see, I have public health insurance (Medicaid), and I'm a former drug addict, which, hypothetically, was the cause of my terrible infirmity in the first place. Consequently (with regards to my treatment by these "world-class," reputed plastic surgeons), I am feeling slighted & betrayed. I feel as if my doctors are treating my case with less urgency, seriousness & sophistication, because they think that I am a lost cause, a second rate citizen. As of yet, their sterling reputations as the best plastic surgeons in my state truly belie them & this reality. The have not yet even once offered me referrals to psychological or psychiatric treatment or to support groups that might be able to help me in my struggle to adjust to facial disfigurement.

The closest I have come to finding any psychological support for my experiences is through the local Alisha Anne Rush Burn Foundation. They have put me in touch with a remarkable woman: a burn victim & 28-year survivor. I am amazed & enthralled by her. She talks to me with such poise, calm, strength, confidence, stability & compassion, and that's all after she had burned over 80% of her body, lost both her hands and breasts, had to have her eyelids, her nose, her entire face reconstructed--after 23 operations over 12 years time. She is truly a "survivor!"

I gain so much perspective from our conversations, as my worries over a partial facial disfigurement seem so selfish, small & contrite compared to her experiences. I believe that I will have a lot to learn from her and from other people like her, but I worry that we may not be able to relate to one another though experience, because I am not a burn victim. I have just simply suffered from a terribly gruesome flesh-eating bacteria that killed a 1/4 of my face.

Despite this woman's courageous compassion & despite the enduring support I receive from close friends & family, I still feel very traumatized by this experience. Right now, I feel like a monster! I rarely go out in public, and never without wearing surgical masks to hide my horrifying visage from cruel, insensitive, unsuspecting bystanders. I'm in serious need of help: help coping, help adjusting, help surviving, help overcoming my shame. I write all of this as a plea for help, for assistance.

Where might I be able to find psychological support for my ongoing struggle to cope with facial disfigurement? Where might I find talented, experienced, empathetic surgeons who are compassionate & honest enough to handle my treatment with excellent, gentle care? Surgeons who are willing to operate without prejudice on the vermin of the social underbelly of a cosmopolitan city?

Is there anyone out there who can help? Please respond to this comment with advice, emotional support or reassurances! I'd appreciate any gesture of kindness, sympathy or understanding at this point. Thank you! Blessings to All.

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Here, you will find a collection of images chronicling the transformations of my new face as I have progressed through three cycles of craniofacial reconstructions and recovery, including multiple postponements.













My first two surgeries were meant to reconstruct my mouth & upper jaw; a major skin & bone graft to give shape somewhat to an upper lip (now referred to as my "flap") followed by a slight "revision of the flap" meant to refine the contours of the upper right side of my mouth, where a portion of my real lip survives and to resolve a persistent drooling/leakage problem from the gaps in the mandible graft.

The third operation was called by the surgeons, "a first-stage nasal reconstruction
forehead flap with possible skin graft from either leg or chest." This surgery left me with a large open wound and scare down the length of my forehead and with a sausage-like flap of skin connecting my forehead to the tip of my nose, where a nostril will soon be reformed. The bright, blood red open wound on my forehead eventually healed over with no drainage & without much of a scab. I keep the scars on my forehead covered by long, shaggy locks of my brown hair, cut by a friendly, philanthropic, in-home stylist.


I am patiently awaiting my fourth surgery: "a second-stage nasal reconstruction with possible skin & cartilage graft from either ear." The pain after this fourth surgery is supposed to be pretty intense. The ear is full of sensitive nerve endings. I am not looking forward to the experience. I wonder how I will be able to sleep on my side & watch TV laying down with my head propped on my hand.

But I will survive with courage, strength, patience, persistence and perseverance. This whole experience is most certainly a trial of patience & perseverance. My soul is being run through a ringer, pressed dry, wrinkled & worn out by all the awesome tensions & turpitude of my lowly existence. Pray God, may I survive!

Thus begins a journey of wanton wisdom...

I'm nervous, absolving anxieties about unfamiliar abodes. I'm rarely at a loss of words, because I ramble roughly & righteously through my babbling brook of a brain--my stream of consciousness comes hither to wither through words. At once, you might find wanton wisdom; at twice, two cents worth of meaningful soliloquy. Sometime upon a time ago -- before, sooner or after -- I will have something intelligent to say, I assure.

But for now, a bumbling blabbering of brainstorming on PHRASEOLOGY. "Gay" or "Queer?" "Recovery" or "Sobriety?" "Same-Sex Marriage" or "Marriage Equality?" "HIV" or "AIDS?" These are the teetering, tumultuous terms that trouble me from time to time. Here is a taste of me expounding:

"Queer," to me, is a more politico-culturally sensitive and meaningful term for a certain type of homosexual which leads a liberal, liberated, open, out-rageous lifestyle. "Gay" is gay (in the slang, shitty, derogatory way) overdone, oversimplified, kitsch, cliche, not so perfectly P.C.!! [I like double exclamations & alliterations. If you can't already tell, you'll notice this penchant in spurts & flashes in time told tellings tell.]

"Recovery" reeks of raucous, ridiculous, cowardly cycles of (un)disciplined restraint. Where an arbiter of addiction allows allowances and awkward deviations from a path toward an ultimate goal: "Sobriety." This second term seems more secure & structured & sanctified to me, setting the bar sky-high for addicts who must abstain and never falter. It's a challenge to stay firmly concentrated on & committed to quitting cold-turkey. No turning back. No weakness. No retrys. No end.

"Same-Sex Marriage" vs. "Marriage Equality" is a more delicate quandary or comparison. Both are grandly politicized jargon borrowed by my brethren betrayed and begotten. One term overtly over-sexualizes the concept of devoted love between a couple of men OR women (but not both at the same time). It conjures up allusions to unadulterated sexual acts, seemingly deviant to the majority of GLBT opposition. Arguably, it defeats the Cause in its repetitive pronunciation on the political scene. The other term, "Equality," more justly captures the spirit of Civil Rights, Human Rights, dignity & law. It's a safe word. A powerful word, full of recompense and retribution--invigorating, empowering, astute. Keywords "sex" & "equality" here conflict in their candor; the former freely associates marriage with intrinsic vulgarity, and the later boldly makes a definitive statement of good.

In my mind, through my experiences living through the complete bio-chemical corruption of my immune system, I have proven to myself the almost sacred truth that "virus" is far less destructive than "syndrome." When I was first diagnosed HIV-positive in early 2002, I immediately planned on leaving University in my final semester to come and start a new & more open, healthier life in Northern California. I wrote an op.ed. journal article for the school newspaper, prosaically revealing to students the reasons for my early departure. I disclosed to the entire student body of my small, conservative, public university the story of my social isolation, depression and eventual diagnosis.

But instead of easing my audience into the horrors of an epidemic, I forwent with trivialities, bypassed the less frightening of terms and slide straight for the harsh, tragic, penultimate reality of full-blown disease. I said that I had "AIDS," instead of "HIV." : a shamefully intentional mispronunciation to garner more grief & sympathy from strangers. The plan didn't necessarily back-fire, as opposed to lead to obvious ends. Everyone thought I was dying. When in reality, I'd have six to seven more years before death would come anywhere close to knocking down my door. By that time, all my old friends had forgotten me as a goner, sentimentalizing the past, fantastic memories of a once-was me: my better self--healthy, happy, disease-free. In hindsight, I realize that it was a mistake to mismanage my vocabulary for pity's sake. This is how I learned of the sharp contrasts and disjuncture between these two final terms.

Every day is a new lesson, filling the pages of life's great learned literature with teachings of conflicts, contrasts and comparisons between two remarkably dissimilar ideas that are at first glance one in the same. We must siphon through the assimilative patterns of discourse & jargon to best comprehend the exclusive meaning of particular phrases & peculiarly parceled pairs of words. This is the key to unlocking the principles of rhetoric, hypotheses and debate. This is good judgment and sound intellect. This is how human beings are mutually understood.