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.

Estranged Mother Re-enters My Life...

At 8 o'clock yesterday morning, I received an out-of-the-blue, surprise phone call from my estranged, alcoholic, bipolar mother who told me that she is coming to visit me in San Francisco for the next week in time to see me during my surgery: my third craniofacial reconstruction, the first of three surgeries to reconstruct my nose.

I immediately told her that I did not want her to come and see me. I have not seen her in 12 years, and the estrangement was of my own accord as I was (like my brother and sister) trying to escape the emotional turmoil and negative influence of such a psychologically impaired woman. Over the phone just yesterday, she sounded as emotionally weak and troubled as ever I knew her. It was a stark reminder for me that I did not want her in my life.

I'd like to say that she was a terrible mother, spending all of my teenage years slumped over in an alcoholic stupor, violently reacting against her dysthymia and psychoses, but she did however succeed in raising three very responsible, respectable, honest, compassionate young adults. I just can not reconcile the trauma of living through all the tragic, negative experiences in my youth with a troubled woman's good intentions and motherly love. Neither of my siblings nor I can even remember any good times with our mother during our childhood and teenage years. It's all just nightmares!

Even though I told my mother that I did not want to see her while she is in San Francisco, she was still very adamant on coming. She said she had something to give me that she couldn't just send in the mail and that she wanted me to know that my mother cared enough about me to be present in my life during my trying times. I told her that I am already forced to deal with the complex emotional impact of a facial deformity and a changing visage, that I did not need to be additionally troubled by the anxiety and turmoil of reconnecting with my mother.

So she promised that she would make no attempt to see me. She would just visit the nurses at the hospital, to give them my gift and to have them let me know that she was there during my time of need. I plan on telling my doctors, nursces and social workers not to allow my mother to enter my room or visit me, while I am in the hospital. I myself was still adamant that I did not want her to come to San Francisco. She asked me to take a few hours to think about it and to call her back in time for her to be able to catch the bus to the airport in Pittsburgh. My mom lives in Johnstown, Pennsylvania.

So I hung up the phone and immediately called my brother to tell him of these developments and to get his advice on a decision about my mother's arrival. He provided some very insightful, compassionate advice. He told me, as a father, he understands my mother's desire to be there for her sickly son in his time of need, even if just to hold my hand and whisper in my ear that she loves me. He said despite all the terrible things she put us through as children, despite our resentment, she deserves the privilege of being present in my life at this time.

Although, he said that I needed to make it abundantly clear that that's exactly what it would be: a privilege, and that I have ever right and need to establish certain boundaries. My boundary is that I do not want to see her while she is here. We can write letters back and forth and talk on the phone for a long while, reestablishing our relationship, testing the waters far before I'd be ready to see her face to face. I do not want my mother to bring be down as I struggle to adjust to living with a deformity.

So, I called her back and agreed to let her come to San Francisco under the stipulation that she would make no attempt to see me. I might have her meet my Social Worker, Peer Advocate and AIDS Specialist from 360: The Positive Care Center at UCSF Medical Center so that she can understand what I've been going through these past five years and know that I am well taken care of. I even found her accommodations at a charitable, nonprofit boarding house in the Castro called "The Family Link." It only will cost her a $30.00 per night donation for a one week stay, and I've already set up her reservation.

I'm just waiting for her to call me when she arrives in San Francisco to get directions on how to get to the boarding house from the airport. That's the least I could do for her to express some love and appreciation; otherwise, she would be living in the airport and hospital waiting rooms for a whole week. I had that experience when I first arrived to San Francisco in 2003, and I will not have my mother live like that, even for just a week.

Another insightful thing my brother said was that IDEALLY, her visit could be a catalyst for improvements in our relationship. I wasn't expecting such a mature, level-headed response from my brother. I know that my sister is going to bust a nut when she finds out. I honor my brother for his maturity and compassion toward me and my mother. I'm proud to have him as a brother. I don't know if I'll ever be as proud of my mother. Not even close!

So where does that leave me? Walking into my surgery on Monday with a little anxiety about my mother but more excited about getting a new nose. I'm proud of myself. I was able to keep a level head through this entire ordeal over the phone with my mother and not to be perturbed by her contacting me. I inherited a devastatingly difficult bipolar disorder from my mother and I must say, from our conversations on the phone, I certainly have a stronger, healthier grasp on my psychological health than she does.

Unlike my mother, though our separation, I have grown into a relatively more stable person, who lives through my emotions less viscerally and extreme. Though I have hills and valleys, bouts of mania and depression, but I stay well medicated and am always on guard to monitor my emotional gauges. This experience with my mother over the phone has helped me realize that I indeed do have control over my emotions. Thanks be to God!

In hope of some sort of reconciliation, solace and peace!...