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!...
12 September 2008
07 July 2008
The Solitary, Melancholic, Deepest of Blue
The following text is a letter I wrote to a recent online "Friends" addition. This random kid sent me an email in MySpace.com asking if I wanted to connect. His profile seemed pretty interesting, so I indulged him in an email exchange. In my first email, however, I told him to read my blog: Plentiful Beatitude, and to decide if he still wanted to get to know me after hearing of my tragic situation.
He responded, expressing his immense sympathy and saying that he would like to get to know me better. He seems to think that we could have the mutual effect on each other of changing our perspectives and defeating the "woe is me!" mentality. We'll see where tihs all leads. If anything, I've garnered some immense incite into the nature of depression.
Words to be remembered:
Life has lead me on some difficult roads, but none so treacherous & tragic as the one I am careening down now a'days. Living without a face is not easy, but I survive. Sometimes, like you, I get that "woe is me!" feeling--quite often, in fact--but somehow I succeed in sweeping the gloom & doom aside and freeing my mind for happier thoughts. In the end, all I can tell myself is "one day, this too shall pass!"
Depressed & reclusive tendencies are not a definitive symptom of any personality flaw or psychological handicap. Feeling down once in a while (even for long, cyclical periods) is perfectly normal. So, unless you happen to be severely devastated emotionally and victim of an irresolvable psychological impairment, then you have nothing to worry about.
There are many more colors of the rainbow than just the solitary, melancholic, deepest of blue. I can tell from you're MySpace profile & pics, quite simply, that you have a very colorful, vibrant personality. Don't trust in depression & doom's day dealings, for they are deceptive and--much more often than not--temporary. Tumultuous, but temporary!
As per your inquiry about the who's, what's & how's of my tragic misfortune, I'll tell you this: In late September, 2007, just after my birthday, I could tell that I was getting sick. But I wrote it off as just another rhino-viral attack, so I didn't go in to see my doctor. In stead, I just thought I would lay back in bed for a few days and tough it out. That was, obviously, the wrong thing to do.
The last thing I remember, before waking up in the hospital with a massive hole in my face and tubes hanging out from me all over the place, was watching Robin Williams on Late Night with Conan O'Brian (in San Francisco). I think it was a re-run. I'm not sure what the exact date was that I lost consciousness, but it wasn't before the end of the month. The doctors estimate by the degree of necrotic decomposition and the failure of my immune system that I must have been unconscious for between 10 to 12 days. That is just enough time for my kidneys to fail and for my mouth & nose to shrivel up & die. Sorry to be so bleak & brute about it.
In light of my present deformity & handicap, I've had to completely re-evaluate the direction of my life, especially how I intend on continuing my education & pursuing a career. Before the devastation, I was aiming to get an MFA/PhD in Experimental Queer Performance or a PhD in Contemporary French Theater. But now, I've been deformed so monstrously that I shan't be seen by the public without a mask on, and my speech (once made eloquent & refined by a quarter-life's worth of theater training) is now grotesquely impaired. So studying and teaching Theater or French is pretty much out of the question.
As an alternative, I've considered focusing on different of my passions in life. Once my reconstructions are complete and I feel comfortable venturing out into the world vis-a-vis per say, then I may go back to school either to get a BA/MFA in Graphic Design & Advertising or to get my MSW/LCSW (Master's of Social Work/Licensed Clinical Social Worker Certificate). But that decision is one that I have no strength to consider; at least, for the next year, until my reconstructions are complete.
There. See. I've written a novel. Such is my nagging predisposition. I've a habit of rambling on & on about the most inane, contrite subjects; although, I don't think that anything I've mentioned in this email qualifies as such. I hope you appreciate my verbosity. Please let me know what is getting you down. Maybe I can help to brighten your day a lil'. I look forward to hearing back from you. Stay Safe & Be Well! Peace, Love, and Loads of lazy, lascivious, loud leopard-skin leotards! (I like alliteration! Alliteration is my friend.)
Thank you! Talk to you soon...
He responded, expressing his immense sympathy and saying that he would like to get to know me better. He seems to think that we could have the mutual effect on each other of changing our perspectives and defeating the "woe is me!" mentality. We'll see where tihs all leads. If anything, I've garnered some immense incite into the nature of depression.
Words to be remembered:
Life has lead me on some difficult roads, but none so treacherous & tragic as the one I am careening down now a'days. Living without a face is not easy, but I survive. Sometimes, like you, I get that "woe is me!" feeling--quite often, in fact--but somehow I succeed in sweeping the gloom & doom aside and freeing my mind for happier thoughts. In the end, all I can tell myself is "one day, this too shall pass!"
Depressed & reclusive tendencies are not a definitive symptom of any personality flaw or psychological handicap. Feeling down once in a while (even for long, cyclical periods) is perfectly normal. So, unless you happen to be severely devastated emotionally and victim of an irresolvable psychological impairment, then you have nothing to worry about.
There are many more colors of the rainbow than just the solitary, melancholic, deepest of blue. I can tell from you're MySpace profile & pics, quite simply, that you have a very colorful, vibrant personality. Don't trust in depression & doom's day dealings, for they are deceptive and--much more often than not--temporary. Tumultuous, but temporary!
As per your inquiry about the who's, what's & how's of my tragic misfortune, I'll tell you this: In late September, 2007, just after my birthday, I could tell that I was getting sick. But I wrote it off as just another rhino-viral attack, so I didn't go in to see my doctor. In stead, I just thought I would lay back in bed for a few days and tough it out. That was, obviously, the wrong thing to do.
The last thing I remember, before waking up in the hospital with a massive hole in my face and tubes hanging out from me all over the place, was watching Robin Williams on Late Night with Conan O'Brian (in San Francisco). I think it was a re-run. I'm not sure what the exact date was that I lost consciousness, but it wasn't before the end of the month. The doctors estimate by the degree of necrotic decomposition and the failure of my immune system that I must have been unconscious for between 10 to 12 days. That is just enough time for my kidneys to fail and for my mouth & nose to shrivel up & die. Sorry to be so bleak & brute about it.
In light of my present deformity & handicap, I've had to completely re-evaluate the direction of my life, especially how I intend on continuing my education & pursuing a career. Before the devastation, I was aiming to get an MFA/PhD in Experimental Queer Performance or a PhD in Contemporary French Theater. But now, I've been deformed so monstrously that I shan't be seen by the public without a mask on, and my speech (once made eloquent & refined by a quarter-life's worth of theater training) is now grotesquely impaired. So studying and teaching Theater or French is pretty much out of the question.
As an alternative, I've considered focusing on different of my passions in life. Once my reconstructions are complete and I feel comfortable venturing out into the world vis-a-vis per say, then I may go back to school either to get a BA/MFA in Graphic Design & Advertising or to get my MSW/LCSW (Master's of Social Work/Licensed Clinical Social Worker Certificate). But that decision is one that I have no strength to consider; at least, for the next year, until my reconstructions are complete.
There. See. I've written a novel. Such is my nagging predisposition. I've a habit of rambling on & on about the most inane, contrite subjects; although, I don't think that anything I've mentioned in this email qualifies as such. I hope you appreciate my verbosity. Please let me know what is getting you down. Maybe I can help to brighten your day a lil'. I look forward to hearing back from you. Stay Safe & Be Well! Peace, Love, and Loads of lazy, lascivious, loud leopard-skin leotards! (I like alliteration! Alliteration is my friend.)
Thank you! Talk to you soon...
17 February 2008
Plentiful Beatitude!!
A letter to my dear friend Peter Maybarduk. I believe this well summarizes the tumultuous turmoil in my life these days. I hope that any reader will find in their hearts a certain amount of sympathy and compassion for how I am suffering. God Bless you, as he has me...in giving me life, though in suffering. What do you think?
In hopes to reconcile my hardships and harvest once again the plentiful beatitude of our dear friendship, I write to you know to express a rather tragic story. I trust that in telling you this "petite histoire de ma perte," you will be encouraged to express your own sympathy and understanding to me in my suffering. Always suffering.
On October 7th, 2007, I was discovered by the San Francisco Fire Department, unconcious and deathly ill, laying in a pool of my own blood and urine in the soiled and dirty bed of my sparse, little studio apartment. My teeth were falling out and my face was blackened by a severe bacterial infaction. In addition, I was suffering from a miserable case of PCP pneumonia.
The fire department rushed me to Saint Francis Memorial Hospital, where I remained for two weeks unconscious to the world. the doctors there were forced to perform a kidney dialysis on me for which they were required to contact my father in Massachusetts for permission. The tried to control and defeat the bacterial infection of the face, but unfortunately were unsuccessful.
After two weeks of severe illness, I was transfered by ambulance to UCSF Medical Center to undergo emergency debridement surgery. The doctors there immediately amputated the dead bone and tissue from my face. For all of this, I was still unconscious. when I eventually woke up, I had the dreadful experience of looking in the mirror to see half of my face missing. I no longer had a mouth or half a nose. All that remained was a gaping hole above my chin. It was all together the most terrifying sight I have ever had to witness, and it was all me, myself, my small stature, weak, humorless, contrite self that was suffering from this unfathomable loss of face.
I remained at UCSF for one month (until Thanksgiving) while they worked to upset and alleviate the pneumonia. They were, praise God, successful at saving my life. Then I was transferred back to Saint Francis, where I remained through the New Year and after. I could not go home because the hole in my face keeps me from being able to eat or drink orally. Therefore, I was semipermanently linked to a Gastrointestinal Tube for feeding. I had to learn to talk without lips and to smell again -- all this in preparation for facial reconstruction surgery.
Halfway through January, I was transfered to the permanent acute medical residency at the Laguna Honda Hospital & Rehabilitation Center. This is where I am writing to you now. I remained here for two weeks, until the first of my multiple facial reconstructive surgeries scheduled for January 30th.
On the 30th of January, I was transferred for a two week stay at San Francisco General Hospital, where the plastic surgeons conducted what they attested to be a very successful cosmetic operation to replace the missing bone and skin of my upper jaw. They took a rather large piece of flesh for my lower leg and bone from my fibula to graft on my face.
For the two recent weeks at the start of February, I remained in intensive care, suffering from immense pain and swelling. As the inflammation in my new face began to subside, I was able to catch a glimpse of myself in the mirror to discover that I awfully resembled a cartoon version of a sea mammal: sea lion, walrus (without teeth), or manatee. It was a depressing sight, to say the least. I have to stay this way for 3 to 6 months, until my next surgery. Since November, I have been wearing surgical masks to cover my unsightly visage.
Laguna Honda is an old, antique hospital form the 1920's. I fortunately have a private room in what otherwise would be for me an open ward facility. There are 25 people on my ward: The Positive Care Unit (O4), all living with HIV. Most of the residents are elderly. I am the youngest person in the entire hospital. At 28, I can't say that I feel very at home. In fact, I am suffering form heightened anxiety.
The loneliness of the hospital setting is inexorably unbearable. I can't describe to you well enough the stark silence and motionlessness of laying in my hospital bed with nothing but the steady hum of an area fan and the quiet click and groan of my feeding machine to keep me company. I like to keep the door open to be able to watch people as they pass by: nurses and patients alike. As its rather uneventful on my ward, I generally anticipate with great enthusiasm the arrival of my good friend Curtis Moore, MPH, the Executive Director of Bay Area Young Positives. He is as outstanding a person as I fondly remember you to be.
Despite the humdrum atmosphere of the clinial setting, there are occassional activities organized by a very special woman: Melanie, the Art Therapist. The Social Workers have scheduled various times during the week to keep me occupied and to have my mind remain safe from negative emotions. They are Jackie and Stephanie.
In fact, I just had a sit-in with Stephanie today, and I told here my life story ever since the day you discovered me in our dorm room senior year at William & Mary, trying to end my own life. I told her about you, your studies at Boalt Berkeley Law and your trips to Venezuela to study the Warao. Is that where you are now? I told her that you are my best friend. Is it appropriate to refer to you as such now after such time and distance? I dearly hope that I have your confidence still as such.
Above all else, beyond the pain and terror of losing my face, past all the despair and psychological turmoil, I know one thing to be certain: I miss you!! and I love you with as much of my heart as can be spared. I am terribly sorry that there has been such silence between us ever since you left the Bay Area. I dream to know of what amazing adventures your young life continues to lead you on. I expect that you are still as diligent and driven a social activist as ever I'll know in this world. I yearn to hear your stories, and I gladly anticipate your return to the states.
I love you, Peter! And I wish you the best of health and happiness while you are away from the country. I look forward to talking with you upon your return. Please stay safe and continue to be that super hero we all have learned to love so dearly. You are my heart and soul. I am so proud to have you as a friend. God Bless and good tidings. À Bientôt mon meilleur ami! You are my hero.
With the greatest amount of love and admiration...
In a state of undeniable despair, but ...
Full of hope and wanting to reconnect.
Your dear friend,
Matt(e)o | QHereKidSF
— — — — — — — — — — — — — — — — — — — — — — — — — — — — — — —
In hopes to reconcile my hardships and harvest once again the plentiful beatitude of our dear friendship, I write to you know to express a rather tragic story. I trust that in telling you this "petite histoire de ma perte," you will be encouraged to express your own sympathy and understanding to me in my suffering. Always suffering.
On October 7th, 2007, I was discovered by the San Francisco Fire Department, unconcious and deathly ill, laying in a pool of my own blood and urine in the soiled and dirty bed of my sparse, little studio apartment. My teeth were falling out and my face was blackened by a severe bacterial infaction. In addition, I was suffering from a miserable case of PCP pneumonia.
The fire department rushed me to Saint Francis Memorial Hospital, where I remained for two weeks unconscious to the world. the doctors there were forced to perform a kidney dialysis on me for which they were required to contact my father in Massachusetts for permission. The tried to control and defeat the bacterial infection of the face, but unfortunately were unsuccessful.
After two weeks of severe illness, I was transfered by ambulance to UCSF Medical Center to undergo emergency debridement surgery. The doctors there immediately amputated the dead bone and tissue from my face. For all of this, I was still unconscious. when I eventually woke up, I had the dreadful experience of looking in the mirror to see half of my face missing. I no longer had a mouth or half a nose. All that remained was a gaping hole above my chin. It was all together the most terrifying sight I have ever had to witness, and it was all me, myself, my small stature, weak, humorless, contrite self that was suffering from this unfathomable loss of face.
I remained at UCSF for one month (until Thanksgiving) while they worked to upset and alleviate the pneumonia. They were, praise God, successful at saving my life. Then I was transferred back to Saint Francis, where I remained through the New Year and after. I could not go home because the hole in my face keeps me from being able to eat or drink orally. Therefore, I was semipermanently linked to a Gastrointestinal Tube for feeding. I had to learn to talk without lips and to smell again -- all this in preparation for facial reconstruction surgery.
Halfway through January, I was transfered to the permanent acute medical residency at the Laguna Honda Hospital & Rehabilitation Center. This is where I am writing to you now. I remained here for two weeks, until the first of my multiple facial reconstructive surgeries scheduled for January 30th.
On the 30th of January, I was transferred for a two week stay at San Francisco General Hospital, where the plastic surgeons conducted what they attested to be a very successful cosmetic operation to replace the missing bone and skin of my upper jaw. They took a rather large piece of flesh for my lower leg and bone from my fibula to graft on my face.
For the two recent weeks at the start of February, I remained in intensive care, suffering from immense pain and swelling. As the inflammation in my new face began to subside, I was able to catch a glimpse of myself in the mirror to discover that I awfully resembled a cartoon version of a sea mammal: sea lion, walrus (without teeth), or manatee. It was a depressing sight, to say the least. I have to stay this way for 3 to 6 months, until my next surgery. Since November, I have been wearing surgical masks to cover my unsightly visage.
Laguna Honda is an old, antique hospital form the 1920's. I fortunately have a private room in what otherwise would be for me an open ward facility. There are 25 people on my ward: The Positive Care Unit (O4), all living with HIV. Most of the residents are elderly. I am the youngest person in the entire hospital. At 28, I can't say that I feel very at home. In fact, I am suffering form heightened anxiety.
The loneliness of the hospital setting is inexorably unbearable. I can't describe to you well enough the stark silence and motionlessness of laying in my hospital bed with nothing but the steady hum of an area fan and the quiet click and groan of my feeding machine to keep me company. I like to keep the door open to be able to watch people as they pass by: nurses and patients alike. As its rather uneventful on my ward, I generally anticipate with great enthusiasm the arrival of my good friend Curtis Moore, MPH, the Executive Director of Bay Area Young Positives. He is as outstanding a person as I fondly remember you to be.
Despite the humdrum atmosphere of the clinial setting, there are occassional activities organized by a very special woman: Melanie, the Art Therapist. The Social Workers have scheduled various times during the week to keep me occupied and to have my mind remain safe from negative emotions. They are Jackie and Stephanie.
In fact, I just had a sit-in with Stephanie today, and I told here my life story ever since the day you discovered me in our dorm room senior year at William & Mary, trying to end my own life. I told her about you, your studies at Boalt Berkeley Law and your trips to Venezuela to study the Warao. Is that where you are now? I told her that you are my best friend. Is it appropriate to refer to you as such now after such time and distance? I dearly hope that I have your confidence still as such.
Above all else, beyond the pain and terror of losing my face, past all the despair and psychological turmoil, I know one thing to be certain: I miss you!! and I love you with as much of my heart as can be spared. I am terribly sorry that there has been such silence between us ever since you left the Bay Area. I dream to know of what amazing adventures your young life continues to lead you on. I expect that you are still as diligent and driven a social activist as ever I'll know in this world. I yearn to hear your stories, and I gladly anticipate your return to the states.
I love you, Peter! And I wish you the best of health and happiness while you are away from the country. I look forward to talking with you upon your return. Please stay safe and continue to be that super hero we all have learned to love so dearly. You are my heart and soul. I am so proud to have you as a friend. God Bless and good tidings. À Bientôt mon meilleur ami! You are my hero.
With the greatest amount of love and admiration...
In a state of undeniable despair, but ...
Full of hope and wanting to reconnect.
Your dear friend,
Matt(e)o | QHereKidSF
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