No, I wasn't a leucemia pacient on chemotherapy enduring bone marrow transplants and the process of first killing all the existing bone marrow in the hope of replacing it with healthy bone marrow. We can go through our life passing through the world's communities finding people who have it worse than others, creating lists and scales. There is always someone who has it better and who has it worse. Most experience is personal and private. So we don't truly know how anyone experienced or experiences their lives. We live within fantasies and projections of those fantasies upon other people. The leucemia patient sharing the room with me in February 1983 was an angel. A really sweet boy. I wasn't an angel nor a really sweet boy. But I appreciated the company of my roomate. I would have prefered not being in that situation. I would have prefered being like the other kids playing on the playground at school, playing football in the front yard of Rodney Carr's house or the front yard of Todd Golub's... Supposedly their biggest problem being: will they be able to play football this afternoon, see the Giants game on Monday Night Football that evening and still have the science project ready on Tuesday or if the cute strawberry blonde sitting across from them in Mrs. Jacob's Home Economics class will accept their invitation to the school roller party in Whitehouse Station the following Saturday...
As if it wasn't enough being ostracized by my peers and placed aside by my mother, I tell myself that I am a biological flaw. This is not a "woe is me." Somehow I must accept the truth. I was born defective, pudriendome (rotting) inside... premature entropy... Isn't that so? I was born to create defective children who will suffer; depending upon our economic level, the amount of suffering (if I could create children. Dr. G. took care of that problem). Would I have suffered more or less had we not known about the inheretance from my father? Maybe I've got it all backwards. Maybe you don't say anything nor do anything nor know anything; how my father lived his 34 years and how his mother lived her short life... You get sick and you suddenly die. But before you become ill and die, you have one less problem to worry about so you can focus on the normal concerns of life. But then I wouldn't be here to write about it... Margarita doesn't lose because I am as I am. She is very content... Maybe her newfound responsibilities towards me related to my illness makes her feel more profundity in her life, in our relationship. The more manageable responsibities you place upon a person, the more satisfaction that person experiences... Hopefully that person isn't overwhelmed by the circumstances of their internal lives... And I think about what Michelle said back in August 2002, Ross, it's time you met someone who didn't require so much work, so that you may focus upon yourself and they may care for you and not the opposite...
Dr. G. told me that I must remove my Rectum. So I took out a carving knife, jabbed it into my lower abdomin just above my pubic bone, opened up the cavity with a surgical vice, stuck my right hand into the hot and moist insides, dug around with my fingers, found what I was looking for, tugged and tore, ripped and pulled, like when removing the viceras of a goat, and threw the damn thing out into the streets of the Upper East Side... All done Dr. Thank you for the suggestion. I believe I feel better already. Give me a call when you think of something else I should rip out of my body...
He told me that he and his colleague perfected a procedure called the J-Pouch, that prevents the necessity of colostomies (When they sew your anus shut, make a hole in the abdomin wall, pass part of your small intestine through that hole, creating a valve and attach a bag to that hole. The colostomy bag fills up. You remove it, drain it, replace it with a new clean bag, etc... ALL THE REMAINDER OF YOUR LIFE). Thankfully, most of the people who have colostomies are semi-elderlies who discovered the typical colon cancer after the age of 60... So, they aren't plagued with a long future living with this contraption...
The J-pouch http://www.j-pouch.org/Whatis.html is an artificially constructed "rectum" inside the lower abdomin. It is constructed with the lower part of the small intestine... Dr. G said that the surgery took 3 hours and that he would be accompanied by his colleague and a Urologist. I don't know if the Urologist always participates in the J-pouch surgeries because of the delicacy of the region or because I had told Dr. G that I had problems urinating for years... The wonderful thing about surgeons being deities is that they don't talk about what truly is happening within your body. Maybe they are protecting their god-like status by withholding information; the more information you have about yourself and the surgery, the more information you can hold against them... It seems that the urinary problem, not being able to piss like a fire hose, was connected with my "condition". Who knows? When people don't speak with words, the person on the other end of the communication must utilize their 6th sense for intuiting the reasons behind the silences and the silent tones and gestures... God is a pilar of Ice... But I am the one being subjected to the experience that maintains God's status as that pilar...
You may think I'm loopy with my talking about psychics, premonitions and spirits/phantasms. As I've told you, I am not schizophrenic. I don't see elves or gnomes, duendes. Monica from Puerto Rico supposedly saw them. For the most part I don't see spirits or phantasms, ghosts. I have had 3 known premonitions in my life; the one in Prospect Park with the tomboy and the dandelion in the late 90s. The one with Francesca in her Honda CRX in 1988. And the one that is so much more important, the one anticipating Chris's arrival in our lives in March 2007... I don't consider myself psychic nor clairvoyent... I didn't see my grandfather with my own eyes in my Mother-in-law's kitchen in November 2007. He appeared in a photograph for all to see. As far as phantasms, ghosts, spirits go, I didn't see anything until 2005 in Xalapa and Margarita saw it too. We both jumped up in bed. I call them "shadows" because they don't have color, nor do they have form. They don't reflect light. They are like smoke and they disappear as quickly as they appear. Truthfully, I don't know why they appear, because they don't say anything. They don't leave messages... As far as I can recall this has occurred 4 times since 2007. Why do I mention this?
A few days before entering Mount Sinai Hospital for the J-Pouch surgery, I visited Dr. G. for a routine examination and orientation. Towards the end of the examination, when Dr. G. was leaving the examination room it occurred to me to ask him a personal question I normally would be too timid to ask. Dr. G. was taken aback, if not disconcerted about having to respond to that question. What possibility exists that the surgery will cause sexual disfunction? He hadn't seen it coming. I wasn't thinking about this prior to the visit. If he didn't mention it, I wouldn't have thought about it. But he DIDN'T mention it and that's what bothered him so much. His face went stoney. He frowned. He hesitated and then he said, It's a 3% chance. And then he quickly added BUT WITH US, that risk is decreased to 1%... Was he worried about malpractice suits, because he hadn't mentioned the risk beforehand afraid I wouldn't require his services or concerned that he would have to have me sign a form stating that I accept the risk. Yes, we signed forms exhonerating them from certain built in risks. The contract was signed. Thinking about it, I image that's where the problem resided, that he hadn't thought to include another contingency before we signed the contract and made the oppointment for surgery... And if something went wrong...
1 %...
The surgery didn't take 3 hours. For some reason it took 6 hours. Why? I will never know. God didn't want to divulge that information... and I didn't have the money to take him to court. Maybe if I were rich I could write you a highly publishable book with all the juicy details. I'm not rich. I must rely upon the limitations of my fishnet memory...
When you are a medical patient, you cease being personal and private. You become your dog on the veterinarian's table. You become purely biological and physiological. The penis is just a slab of flesh that fills with blood and has heightened nerve sensitivity towards the tip, necessary for the excretion of liquid wastes. If it didn't exist, we wouldn't exist because we would have removed the injection tube of procreation. The breasts are bags of fat surrounding mammary glands. Their soul purpose is to nurture new born babies... Nothing more. Shitting is called defocating and it is a necessary and lifelong experience for all people. The smell is created by bacteria found within the feces. Animals smell their shit to analyze their health. I know if I am about to get sick by changes in my defocation experience... What's the problem? Did you reject the experience of wiping your baby's ass after he had his bowel movements? No. You probably enjoyed the experience because you were participating in the miracle of creating a human life form with so many complex and organic systems, this one clearly functioning. Give him a few spoonfulls of Gerber. Watch the choo choo train enter his mouth. How he closes his beautiful pink gums over the spoon, removing the puré from the spoon. Watch the expression of satisfaction upon his face. Wait a few minutes and watch how it leaves through the other side. A beautiful and healthy baby boy... One day that beautiful and healthy baby boy will develop pubic hair, masculine aromas, will make adult male noises while defocating. He will repeat your process of procreation by ejaculating a thick viscous and sticky cream-colored liquid called semen into the warm and moist vagina of his girlfriend or wife who has different organic smells your son may appreciate or may try and ignore... Your daughter will bleed once a month for between 2 and 5 days for at least 35 years... But she will not just bleed. She will ooze a mixture of blood and dead tissue from bright red to almost black, that thick mixture in the process of decomposing, creating organic smells she will have to learn to accept or ignore along with having to accept the physical and existential discomfort of that reality of being a healthy functioning adult woman with all those incurred "messes", responsibilities and discomforts... Why do I mention this? Because I must take you there. So you can understand.
The day before my first surgery in February 1983 a black man entered my room calling himself "the barber" and that he was there to give me a haircut. He told me to sit in a chair and to disrobe. He proceeded to shave off all my pubic hair. Nice career choice... After my session with the beautician, what became of my recently blossoming adulthood was converted into a rubber chicken... I embarrassed myself. After the surgery, one of the beautiful nurses entered to give me a wash down, since I wasn't strong enough to bathe myself and because the sutures hadn't yet been removed. She sat me down in the desk chair near the window 15 stories above East 67th Street and York Avenue and opened my robe exposing my chest and back. She rubbed me down with a sponge and hot water, very soothing. The white blouse to her white nurses' uniform was slightly open below the neck, revealing the space between her breasts. She, sponging down my arms, my chest, my abdomin around the long scar, being very careful, she moved the robe trying not to expose me. But I had become excited and the rubber chicken sprung out from below the robe. She said, "Oops! Where did this come from?" Smiling, she gently placed it back undercover, and continued as if nothing had happened. I wonder what she told her friends that night. I wish I had the means of communicating with her to see if she remembers that incident 28 years ago. I imagine many other crazy things have happened in her experience as a nurse.
After leaving the recovery room October 31st, 2001 and the miracle of feeling jovial and of not feeling any pain at all I started noticing something strange between my legs; a dormant feeling. My balls, the scrotum and my testicals seemed permanently drawn in, like a bear hibernating. Kind of like the undeveloped testicals of a very young child, although mine had the adult wrinkled texture. When I touched myself down there, it felt as if they were covered with wax... I didn't do anything for days. Of course not. I had to wait for the nurses to remove the catheter. I was shaven down there for the third time. But, now the barber visits you while you are under... So, I didn't have to repeat that embarrassing experience.
I tried so hard to stimulate myself. When Joey visited me, I told her about what I feared and asked her to try doing me a favor I don't believe she succeeded. Somewhere down the road I succeeded in giving myself an orgasm, but with much difficulty. It was a horribly pathetic experience and nothing came out. In men, the orgasm is created by the Prostate Gland, which is the pump that creates the ejaculation. The Prostate Gland is located just above the anus, pressed against the rectal walls and behind the testicals... That's why gay men prefer to receive instead of give; for the non-penile stimulation. You would think it would be the other way around... no? Thinking about the location and the function of the Prostate Gland makes it easier to understand why men develop Prostate Cancer later in life, like Breast Cancer. My theory is that when the organs fall out of use or were over used... God has to kill you in one way or another; it's much easier finding people with breaking down organs than waiting for people rounding bends in the roads above deep ravines to blow out one of their front tires... Due to the prostate gland's location basically embedded within the rectal wall, and because the surgeons removed my rectum, I imagine some nerves were severed in the process. Lo Siento...
When I told Dr. G. that it seemed that I had fallen into the 1%, he said matter of factly, "Well, you can't be sure that it's permanent. Sometimes it returns to normal functioning a month after the surgery. And in the off chance of not recovering your ability to ejaculate, you can always go to a urologist and have him help you impregnate your wife..." Supposedly, when I have an orgasm, the semen goes backwards and ends up in the feces... So, I've gotta jerk off in the Urologist's office and then immediate shit in a tube? and then place that in my wife...? I've never seen anything that resembles semen in the toilet bowl and I'm not about to go exploring...
The problem was that I wasn't married. The women within my age group were thinking about having babies, some of them were watching the clock ticking... But, forget about that. My concern was with their reaction when nothing came out.. Explaining away... Explaining away... my whole life explaining away...
10 years will have passed this coming October since my last surgery. I still remember the last time I remember seeing myself ejaculate in Joey's apartment, laying with her on the floor. It was like a missile launch and landed on my chest. A true sign of virility. A sign of true sexual excitement with Joey. A symbol of freedom, of flying...
When I tell Mexican's Margarita is my wife and that we are married 8 years in Xalapa, the typical response is, "Do you have children?" and upon hearing the negative, they ask "Why not?" with an expression on their face that there is something wrong with us, as if it's not a real marriage. I tell them, "I have enough children" and I point at my brother-in-laws working with me or I tell them, "truthfully, we don't have the time or money with the business and the schedules..." What if I told them, because I don't ejaculate...? Margarita is the 3 child and the first daughter of 12 children. The women of my brother-in-laws first get pregnant and then they marry... That's Mexico. No one waits until marriage to consumate. In fact, many of the parents don't wed after the baby is born. There is a growing epidemic of single mothers here... In Veracruz, there is a saying that when it rains on the wedding day, the couple "ate directly from the pot" comieron de la olla... didn't wait for the wedding night. It rained on my wedding day along with the wedding days of my brothers-in-law...
I dream of the day I can ejaculate again. Not because I want to have children, although I would accept that "mistake"... There is too much to think about with all the risks to come with a comfortable decision. But, because part of the sexual experience as a man is the ejaculation. Just like the woman who likes to show her man just how excited she is... They are comforting guarrantees of success and they are signs of sexual health. I've had enough girlfriends who suffered frigidity, yeast infections, who couldn't "get wet"... We both suffered horribly. Joey didn't have orgasms, but she got wet. Margarita is totally healthy. I don't know if she has orgasms. (The rules and the concerns are different here). But I know she enjoys herself with me. Thank God! She would like to enjoy herself more with me, but that's another side of the story connected with the J-pouch...
About the time they removed the catheter I became horribly ill and developed the first fever I remember having in decades. I later learned that one of the nurses inserted in my arm an unsterilized needle. Unlike my wonderful experience with the nurses in Sloan Kettering Cancer Center 18 years earlier, the nurses at Mount Sinai were ogres, annoyed at having to "serve" the patient, annoyed at having to respond to the situation called their work, their career. Because of the pressure from the insurance companies, Mount Sinai broke the law and released me onto the streets with a high fever. However, If a tree falls in the woods and you don't see that tree fall, did it truly fall? As I said before, I didn't have the money for paying a law suit. Plus, I wasn't in the condition to plan that law suit. They knew it. When I informed my employers, The Salvation Army Homeless Veteran's Shelter in Long Island City that I would have a surgery the following month (This was not long after 9/11) I was asked into the director's office that afternoon and informed that they were letting me go. And then their insurance company dropped me... How about that for Christian Goodwill? Fortunately the Mayor's Office created an emergency medicaid program as a response to all the new cases of PTSD after the towers fell. They didn't have the time, nor the concern for assessing all the new claims. So, I was immediately added to the books, which paid the $50,000 in hospital bills. Dr. G. had the option of accepting my Medicaid. But he didn't want people to know he was flexible. So, he only received our $3,000 deposit securing the surgery appointment. The surgeons cost $40,000 and another $10,000 to the Urologist who also didn't accept Medicaid. Dr. G. wasn't like my Uncle Henry. He didn't believe in sliding scales, he didn't believe that all people deserved the same medical care even if they couldn't afford it. There is a difference between Medicare and Medicaid. Just think about the difference between the two suffixes: "Care" and "Aid"... When you care for someone, it's not a decision, it's a personal concern. Care isn't weighed in dollar signs. Aid on the other hand is a decision to help some one. To give a helping hand; you extend your arm towards a stranger fallen in the street. You grasp their hand, helping them up. And then you release their hand. They say "thanks" and you say "good-buy, have a nice life..." Nothing personal, but weighed in dollar signs, which means you worry about whether you should be the one to extend your hand or if you should pass them, hoping someone else will be a better samaritan... Symantics... We organize our socio-political worlds and lives around symantics and dollar signs, "Us" and "Them"... "Worthy" and "Unworthy" "Care" and "Aid"... The Denzyl Washington movie... about his son with the heart problems... The Will Smith movie "The Pursuit of Happiness"... I was on the welfare roles before leaving for Mexico... What does that mean to you? How does that make you feel?
I couldn't work for at least six months. For 3 of those months I wore a a colostomy bag that fell off randomly when it filled up too quickly... on top of Joey... She laughed believe it or not... One rainy Winter day riding a packed city bus from Coney Island to Kings Highway many blocks away from my apartment. The bag literally exploded in my corduroys, filling them with shit... I imagined filming a movie starring Tom Cruise as Ross "Silverio" Goldstein and his struggles from being a very desired virilent and egoistic womanizer to a man with a J-pouch, a colostomy bag and all that humiliating experience of his suddenly new life...
I tell my in-laws and my brother-in-laws that they shouldn't wait for government handouts. That, if they have the tools, they should figure out a way of getting by without being dependent upon a government that truly doesn't give a damn about them...
When I was discharged from Mount Sinai Hospital I left with my sister Beth in her car, with the seat reclined as far as it could go, trying to move with the motion of the car or trying to ignore that movement, trying to ignore the pain; the slightest movement caused much pain in my mutilated abdomin... Along with the back muscles, the abdominal muscles function to maintain stability of the spine, they serve as stabilizer bars and shock absorbers and they carry almost all the weight of the torso and the head. With every movement, the stomach muscles respond with an immediate counter movement. I felt acutely in my abdomin the slightest turn of the slightest bend, the slightest dip in the road. What Beth's shocks didn't absorb, my abdominal muscles absorbed... But my abdominal muscles were cut in half from just below the solar plexus to just above the pubic bone; at least 10 inches...
I spent almost a week half delirious, not having any desire to eat. My mother and sisters tried force feeding me, wondering what would happen each day I didn't send food to my stomach. My abdomin was protecting itself. It was wounded, horribly wounded and needed time to rest and recover. I probably should have been in the hospital two additional weeks connected to I.V. tubes. They had released me after just 10 days! the amount of time I spent in Sloan Kettering Cancer Center when they removed my large intestine...and they hadn't inserted a dirty needle. The recuperation rate in adults differs greatly from that rate in adolscents...
One of the nights, days before the incredible meteor shower (we counted at least 500) in late November 2001... I had a nightmare. It wasn't a typical nightmare. It was just a horrible feeling; probably the most horrible feeling I have ever felt; that my abdomin was dead, a black hole. But, it wasn't a thinking dream. It was a feeling dream. Actually, I don't believe it was a dream, but it began when I was asleep. I felt something much worse than nausea. It wasn't so much a painful feeling. It was worse than asco, it was a vileness. My body was rejecting the J-pouch. As if it's "neighbors" had determined that the J-pouch was something ransid, pudriendo... I could taste the internal rejection. It spread through my abdomin and rose up from my stomach. I hardly could breathe... This was Death. He had inserted his sycle in my lower abdomin. Joey was laying beside me, in the basement room of Beth and Marc's condo in Hillsborough. I was propped up on pillows, since there weren't any comfortable positions. Laying down flat on my back caused the sensation that what was in my lower abdomin was seeping towards my throat. I wanted to keep it isolated to where it was... After the feeling had passed, I feared sleeping, afraid that I would repeat the experience...
Morpheus is the Greek God of sleep. But, sleep can also be metaphorical for death.
Do you remember the Keifer Sutherland/Julia Roberts film Flatliners? The characters in the movie are medical students specializing in Anesthesiology. The concept of flatlining is that, when a person is under heavy anesthesia, they are beyond the realm of sleep. They are almost totally shut down, on the edge of death (flatlining is when the line on the electronic monitor registering brain waves or pulse rates is still and straight, meaning that the patient is dead. Supposedly a person can be resuscitated minutes after being registered as clinically dead). But they are not dead. Supposedly the person with the most stressful job in the operating room is not the surgeon, but the Anesthesiologist and the Anesthesiologist supposedly is the highest paid. Why? because, in order to protect you from awakening during the surgery and from feeling ANYTHING while they are doing unimaginable things inside of you, they must place you very close to death. The anesthesiologist must calculate perfectly your weight and mass amongst other things to administer perfectly the levels of morphine filtered into your blood stream. They must be extremely alert towards changes in your heartrate, brainwaves... the miligrams of morphine passing into your veins, your oxygen levels... The slightest miscalculation and you die... In Anesthesiology, there is no sleeping on the job...
I don't know about anyone else. But I didn't exist during those hours of surgery. One second they are strapping me onto the operating table, connecting the tubes and telling me to count down from
100... 99... 98...97... Let's see how close you come to reaching 1...
Me focussing on the bottles in one of the supply cabinets, trying not to close my eyes...
96... 95... 94...
Someone lifting me, removing the sheet below, turning me...
93... 92... 91...
The sound of faint voices, echos, movement around me, someone hovering over me, very close to my face...
You're so BEAUTIFUL... You're an angel...
grayness, thick fog dissipating, my eyes making out forms...
There you ARE baby! How do you feel? I'm here with you. Everything is alright.
Heavy and hot drops of water falling on my cheeks. Joey is crying and smiling at the same time.
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