die another day

penthouse prison  [homebound]

In retrospect, it was a prison on many levels. (I’m referring to the deterioration of my relationship with my boyfriend.) This was the beginning of “my phoenix from the ashes” part of the story. This was a time when I was getting physically better, in terms of weight gain, muscle mass, digestion, etc. etc., but mentally, I had never been in a worse state before in my life. Something happened to me after the stroke, but I couldn’t figure out what it was, until over a year later. I saw signs of it at times, and in the next chapter it became much clearer that something was severely wrong.

It was a Friday or Saturday, June 15 or 16, 2005, when I returned home. I had been in the hospital for about five weeks, ever since Memorial Day weekend. Approximately, the same amount of time I spent in the hospital after the stroke. I was physically and emotionally drained. I remember my boyfriend NOT being there, because he had office hours on Friday and Saturday. You would've thought a root canal could wait, or have been taken care of by his partner….(I said I wasn't going to go there!) As I was saying in the previous chapter, my boyfriend’s friend Doug, and “Halle,” my home nurse, put me in a cab, and escorted me home. Doug stayed for about half an hour, and then probably got on the train to go out to Fire Island to his beach house. So there I was alone with the strange woman, in this huge apartment. The only thing I could think of was I wanted to go to bed, just the cab ride across town, was physically exhausting for me. But the bedroom was on the second floor, with one continuous flight of stairs. The only thing I had been used to was the hospital staircase, which has a landing in between each floor, and handrails on both sides. After the stroke, when I was in rehab, I was training myself to walk up and down the hospital stairs during physical therapy. But that was almost two months ago, all of that therapy was kind of useless to me now. I had bedsores, the neuropathy was affecting my balance, and I was so physically weak I couldn't even open the lock to get into my apartment, and my heart rate would go up dramatically just thinking about ascending the stairs. It probably took us about half an hour to make it up the stairs, the home nurse, who couldn’t carry me, (I would leave that to my boyfriend,) led me up the stairs, as I gripped the wall. I think we rested two times, just to catch my breath, and regained some sort of balance. After I got to the top, I think I collapsed on the floor, that's when I noticed something askew in the master bathroom.

After I move in with my boyfriend, we had the master bathroom totally renovated. We took off the door, and replaced it with two large sliding frosted glass doors; lots of mirrored cabinets, and an open shower with a glass divider, and even a Phillip Stark toilet. That's not the point of the story, but my boyfriend and I were very proud of the design. What I noticed was; there weren’t any folded towels on the shelf next to the sink. I was in “charge” of these towels, no one, not even the cleaning lady, Manuel, the cleaning guy, or even my boyfriend could fold these towels, and no one probably cares, except for me. The architect who redid our bathroom, had shown his inspiration pictures for the design, I was drawn to the photo of the towels, artfully displayed, and NEVER used. I thought to myself, how decadent it would be to have a stack of towels displayed like a sculpture. After the bathroom was finished, I went out specifically to buy cheap towels just for this purpose. (Why the towels weren't there is a whole other story in itself, and won't be included in this website.) There I was, on the floor, the bed is calling me to lie down and take it nap, but all I could think about was why they were no towels on the shelf! “Halle,” my home nurse, came to my rescue. I got from the floor, went into one of the many, cabinets and pulled out four towels. My blood pressure was very low, and the sudden movement made me dizzy. I collapsed on the bathroom floor, and stayed there. I started holding the towels, but was interrupted by my home nurse. She said she would take over from there, and immediately the home nurse had four neatly folded towels, stacked one on top of the other, and asked me where to put them. I was in shock! My home nurse was also a control freak , like myself! Later, I found out she was also a Virgo, and she and her husband had their apartment in a similar taste to mine, with minimal furniture, and everything in its place.

“Halle Berry,” my temporary home nurse, was only there for the weekend, and then Eddie returned. I didn't know at the time, but what I was doing was surrounding myself with people. Some of them I liked, some of them were so annoying, I couldn't even look at them, but it was just another distraction to keep my mind off of all of the horrible things that happened to me. My judgment wasn't good either; I didn’t trust my gut feelings. Eddie was a prime example of this. My parents, especially my mother, thought Eddie was a guardian angel, she mentioned that he came to visit me in the ICU, and how concerned he was about me. But what they didn't now, he had a crush on me, yes, Eddie was gay. (That's like taking "chicken hawk" to the next level!) Even in my 115 lbs, whirry eye state, he thought I was the most beautiful thing. I thought it might be a little disconcerting to tell my parents that my home nurse was head over heels for his patient. I didn't even tell my boyfriend, it was just too weird. I put up with it for the longest five weeks in my lifetime. I was elated to give Eddie the responsibility of cleaning out my bedside commode every morning.

I also made Eddie my personal assistance, traipsing all over town to go to the right gourmet market to get my favorite sorbet, going to three or four specialty pharmacies to get the right conditioner and moisturizer, during the hottest June on record in New York history. I remember the first time I went out of the apartment, not to the doctor, or hospital, or to do a CAT scan or blood tests, but to buy a designer lampshade! Way back before the stroke happened, I had made plans to go down to Just Shades in the NoLIta (the infamous shopper’s paradise, a.k.a. North of Little Italy.) I was on a quest for round “chocolate” silk lampshade, which, I thought, would have to be custom made to fit the proportions of my lamp. Even after everything that happened to me, the stroke, the nearly lethal infection, I was still obsessed with the lampshade. In fact, I even remember rendering it on Photoshop. I took a picture of the lamp, and then superimposed a “chocolate” shade, just to give the sales person a very clear idea of what I was looking for. I also had the dimensions of the size of the lampshade (of course this was done way before my stroke ever happened.)

God knows, why I got in the shower to go pick up a lampshade. It was already two o'clock in the afternoon, this is after Eddie unplug me from the pump, cleaned out my commode, helped me make breakfast, and lunch. I was having trouble reading the digital clock in the bathroom, I still can't really explain it but I thought they closed at 4 p.m., but they are actually opened until five. It probably took me over an hour and a half to shower and dress myself, and I couldn't figure out the math, in terms of what time I would need to leave to make it there before they closed. We finally left the apartment, Eddie helping me down the stairs, and carrying the original lampshade, the Photoshop picture, in an old Prada shopping bag. I was just skin and bones, so I didn't notice the heat on the street at all. The only thing that Eddie was missing was the directions to Just Shades. I knew it was on Elizabeth Street in NoLIta, but why don't you try and tell a cab driver after having a stroke. Luckily, Eddie had a cell phone, (given to him by my boyfriend…so generous.) While he was dialing 411, I was trying not to soil my diapers, because of the way the cab driver was swerving in and out of traffic. Somehow we made it there, but before I could go in, I needed to stop at a deli (convenience store.) I was taking two water pills, to stop the ascites from accumulating on my abdomen, and this made me so dehydrated. Until this day, I actually carry around a Gatorade in my bag, at all times.

Eddie had to assist me opening the deli door, and the entrance to Just Shades. My hands were weak; I couldn't even open a glass door. Eddie finally bought me a stress ball; that I could squeeze to build up the muscles in my hands. (Yes, Eddie did care about me, but he also freaked me out.)

I made it to Just Shades, with Eddie following along with my Gatorade and shopping bag, and now I was in my element. I was definitely having problems with verbalizing, but since I had brought the actual lampshade, and renderings, the sales guy knew exactly what I was looking for. Ultimately, I didn't even have to have it made; they already had something I could buy right off the shelf; that was the same “chocolate” hue that I wanted! Less than a month before, I was in the ICU, packed in ice, with 106 degree temperature; but something was actually working for me, a higher power in the form of a “chocolate” lampshade. I didn't even ask how much it cost; the fact that wasn't custom-made made it a bargain. I was having trouble with numbers anyway, they could've said it was $1000, and I would've paid. Thankfully, they just took my credit card, but I did have trouble signing the receipt. My brain had to think of my first and last name, and send the spelling to my hand. That information had to be turned into motor function…it’s a chore to even explain. It wasn't until a year later that my signature looked “normal” again.

Since we’re on the subject, the transaction of money was a problem for me. Eddie and I always took cabs everywhere, and in New York, you had to pay with cash. I got the sense that Eddie was more a “Metro-card” type of guy, he never takes taxies. I was always handing him 10 and 20 dollar bills, I just gave him the change, because what was I going to do with dollar bills or coins. My cognitive skills were so far gone; I couldn't even add one plus one. Shopping online was also another problem, on my home computer I had bookmarked all my “clothing favorites,” before I had the stroke. I was fine with the mouse, but the keyboard was too much information. I was trying to find the perfect spring/summer windbreaker, to cover up the TPN tube running up my left arm. When the TPN wasn't attached to the pump, the connector just sat right below my elbow with a whole bunch of tape, not that attractive. I found this cobalt blue Patagonia jacket, but I couldn't pay for it. I had to wait until my friend Rachel came over to type in my credit card info, and mailing address.

Eddie didn't cook, but he did clean-up the kitchen after every meal. And he was very neat and tidy. Somehow my father found out that Eddie was in the Navy, and they bonded. My father spent the Korean War at sea. (My dad later met, at one of my Christmas parties, another gay man who was also in the Navy. What was it about the attraction to being on a boat and homosexuals, maybe they think it's a sort of like a cruise?) The point of the story; Eddie, from all of his experience at tying knots, was very good at affixing my arm in this special “Saran” wrap, to keep my TPN tube dry, while I took a shower. That was my favorite part of bathing...NOT!!!

I was in the thirst for something cultural, and in the old Barneys New York in Chelsea, the new tenant was the Rubin Museum of Art; Art of the Himalayans. I LOVED the old Barneys, and I was very sad to see it go. This severely wealthy couple bought the old Barneys building, to fit all their Buddha heads, which were probably taking up too much space in the Park Avenue apartment. I was going through my meditation/Buddhist phase, so it seemed like the right time, and it was a block away.

I wasn't that into the artwork, just a lot of Buddha’s and tapestries, but architecturally and technically it was gorgeous. Throughout the museum they had computers with touch-screens explaining about the artwork. Even the gift shop was amazing; they actually had a golden Buddha with diamond encrusted eyes. And of course they had a café with waiter service, no less. It was a shame that I had to use the elevator; they actually saved the original curved staircase from Barney's, which was exquisite. Given my history with stairs, I didn't even want to make an attempt. At one point, about a half hour into our visit, I had an unfortunate “accident.” Thankfully, my ATV covered undergarments kept the smell, and most importantly the leakage inside my shorts. My experience with transcendent art was over abruptly, and I walked, with Eddie, back to the Penthouse prison. (This is a photo of Wat Pho, Temple of the Reclining Buddha, which I visited in Bangkok. The glided Buddha is over 46 meters long and was constructed inside the temple.)

It seemed like it was sunny every day during the summer, not a cloud in the sky. I was obsessed with boats and yachts, probably because I couldn't swim or even bathe without my arm wrapped up in cellophane. So I looked out at the Hudson River, longing to be on a water taxi carrying commuters, or on a sailboat, or on a jet ski launched from one of the large yachts parked at Chelsea Piers, or staring out at one of the cruise ships on its way to the Caribbean. I longed for water, one of my friends who is actually a Buddhist minister, explained to me that water is the greatest healer and cleanser. I longed to have my strength back, to be able to write, to be able to read, but I would have to be patient. But I, like so many other people, want everything NOW! Instant gratification was NOT going to happen, and that pissed me off! I also had great views of the buildings around me; I was on the 20th and 21st floor looking north. There wasn't another building for 10 blocks that was higher than me, total seclusion; we didn't have any curtains in the downstairs level, at all. I was like Rapunzel, waiting for Prince Charming to rescue me, or at least cure me of my diarrhea, and let me wear my boxer briefs, once again.

In addition to Eddie and Leandra, who made weekly visits, I also had two home therapists; that would meet with me twice a week for speech and physical therapy. Prior to the ICU infection, I met with both of these home nurses just a few times, so I had to start the whole process over again. I'm going to concentrate on the physical therapist, let's call her “Betty,” because I can't remember her name, and she was a fanny pack wearin’, fan of Melissa Etheridge, can caulk and spackle your tub in five-minutes lesbian. But she had a great heart, and she was only looking out to make me better. “Betty” really had a problem with the staircase; the fact that it was uncarpeted, had no railings, and was open on one side. That's the difference between a gay male and a lesbian; the dykes just don't get interior design. “Betty” wanted my boyfriend to carpet the staircase, and install railing on both sides. THE HORROR!!! She OBVIOUSLY didn’t get the je ne sais quoi of the staircase!

My appointments with “Betty” were on Wednesday and Saturday. One Saturday, I noticed that she was in an extra special mood, and her fanny pack was adorned with new buttons: two women's signs intertwined; a rainbow flag; “lesbian pride”; yada yada yada… I realized it must be Gay Pride weekend. “Betty” asked me if I was going to the parade? I never really went to the parade when I was well, and ever since my episode at the museum, I surely wasn't going to go now. She understood, but she was so excited about it, and explained to me how she was actually marching in it, as part of a group called “Lesbians-that-wear-fanny-packs, Birkenstocks- with-socks, own-eleven-cats, and-are-hard-core-vegans.” Enough said… that's why I kind of avoid the parade.

When I returned home from my month long journey to hell and back again, I found that the 1000 sq ft terrace had been turned into a construction site. All of the nine birch trees, the two juniper trees, the trellises filled with rosebushes, and all the planting boxes were moved to the Western end of the terrace. The dining table, four lounge chairs, the love-seat, and armchairs, and all of the side tables were stacked precariously on top of each other in a common space between both terraces, close to the stairwell. Not a very pretty sight, especially since it was 95°F and humid, with the sun beating down its rays all day. There were at least four workmen all my terrace, with several other guys suspended from scaffolding, which was held in place by a ropes anchored to the air-conditioning units and the elevator motors that were over our bedroom. It was kind of like Cirque du Soleil, but the workmen were short, sweaty Mexicans, that didn't even speak English. The building was being done from the bottom up, the workmen were re-pointing the brickwork of the building, and then they would finish off as their coup de grâce , by repaving our terrace. It took a total of six months from the beginning, to the end . The longest six months of my entire life, it was like watching a pot boil, because I saw the entire process happening!

I did have some nice moments on the terrace, after all the workmen left, and on the weekends. My boyfriend was watering the trees and plants, because the irrigation system had been shut off. After about a month, when I had gained a little bit of my strength back, I was doing the watering. What had happened is that a little lush forest had been created, by shoving all those trees and plants into such a small place. The entrance to our terrace was at that end, so at least one person could make his way through the trees, as the workmen did every day. When I got done with my watering, I would close my eyes; hear the wind through the birch trees. I would pretend I was up in the Adirondacks, where my parents would take me during the summer. That was in the 1970’s, when there was no AIDS, and I thought I could live forever.

There was one person that really wasn't that sure about how long I would live. This one person; was George, my therapist for the last 10 years. I met him when he was working at NYU Medical Center as a social worker, for terminally ill AIDS patients. George proceeded to tell me that he had a premonition, that I would make it through this. Let's face it, he is seen a lot of AIDS deaths throughout his life, and if George had a dream or nightmare, or saw the Virgin Mary smeared with cream cheese onto a slice of bagel, I'm buyin’ it! George was just making his rounds that day, and discovered me under a tent of clear plastic. The doctors thought I was contagious; I was on a year-long regimen of tuberculosis drugs, that I was just ending. But what I actually had was a case of Pneumocystis Pneumonia or PCP. It took a few days, but my friends and family did not have to wear those silly little masks on their face, and kiss me through a sheet of clear plastic. I was like “The Boy in The Bubble,” or for the kids who are reading us, more like “Pushing Daisies,” the ABC show which I simply adore!

The point of the story; was that George found me when the tent had been taken down, and I was being treated with PCP meds, instead of TB which I didn't even have. I'd been in the hospital for almost a week, so the meds were really circulating through my body, and I felt pretty darn good. George was used to seeing people on their deathbed, with a few weeks or days to live. He was surprised when he came across me. I'd been working at Ralph Lauren Home Collection as a product manager for about a year and a half. I only had to take off nine weeks, most of which, I spent at my parent’s house, three hours north of Manhattan. It was really like a long vacation; that basically sucked!

How George escaped an Irish-American, blue-collar worker, family, and went to Harvard I still haven't been able to figure out. (Maybe I should have asked?) He then proceeded to be a social worker, whose clients were mainly gay men with AIDS. George is SO straight! In one sentence, he was telling me about how he spent a lot of time in The Pines (off Long Island; gay Mecca,) and in another, how he loves how Cindy Crawford looked naked and pregnant, on the cover of Vanity Fair…totally gross, if you asked me! George is always there for me, after returning to Ralph Lauren, my crazy 20 something antics in the East Village, my extended stay at Old Navy Design, my short stint at Gap Design, my last bound-to-fail-relationship of 9 1/2 years, and finally through the most devastating illness, which I'm writing about now.

George came over on a Saturday, and the workmen weren’t there… hooray!!! It was the first time he ever saw our apartment; he was blown away by the views, and the size. When I finally calmed George down, (he still couldn't get over the panorama; and the perspective of the Empire State Building,) he told me that he had this premonition that I was going to LIVE?! I responded, no “I'll just be stuck in this apartment for the rest of my godforsaken life!” I was beyond frustrated, while researching to do a liver transplant; that ultimately would not work and I eventually had a stroke. I'm going off on a tangent, but for very good reason. A lot of people that have read my website are STILL confused as to why I didn't get the transplant. I did not have hepatitis B or C, but what I did have was cirrhosis (or a very f*%ked up liver!) My liver did regenerate very very slowly, with the help of less toxic AIDS meds, no steroids, no recreational drugs, no drinking, and a daily dose of blood thinner, to top it all off. The reason that the stroke occurred, was before this I was having mini-strokes, or encephalopathy episodes (aka Mr. Snuffleupagus. ) Every time I had these mini-strokes, my liver was not processing the toxins, and they were seeping out into my internal organs, including my brain. A blood thinner was the answer to all my problems supposedly, but it couldn't get me out of this awful state I was in. All the money in the world, my friends, my family, my sister, who would have given up half her liver, and even this out-of-obligation love from my boyfriend, couldn't make me happy! I’ll repeat this again, something happened to me after the stroke. Finally, to clear up why I did not have the liver transplant, I created a text/art image entitled “Mr. Snuffleupagus” by David Capogna.

Since we're on the subject of my medications, I'd like to take another tangent. Prior to the stroke, I had this whole slew of meds I was taking. And of course, I had a spreadsheet listing all the medications, vitamins and supplements, with the dosages, and even listing what time of the day I should take them. In addition, I had all the pill bottles numbered with a black Sharpie, corresponding with a numbers from the spreadsheet. To me, this was perfectly normal. The colors decisions were arbitrary ; AIDS is most commonly colored red; I love lime green so I used it for DEPRESSION, because it makes me happy; DIGESTIVE SUPPLEMENTS are the color of Pepto-Bismol, etc. etc… I would assemble all my pills into daily dose pill containers, I was doing was taking meds and eating. I had 14 pill containers, to supply me with two weeks’ worth of meds. After the stroke I couldn't even open up MicroSoft Excel, most of my medications had changed, and the worst part of that was that I was being injected daily with a blood thinner. I HATE NEEDLES! This was such a great chance for my boyfriend to prove “that through sickness and in health” he would be there for me. He coordinated all of my medication, and even injected me with my blood thinner. The blood thinner had grown into this enormous obstacle, which kept rearing its head every night before I went to bed. Eddie's days were numbered, and my parents were returning to New York, my boyfriend had plans to visit his mother, or go to a dental conference, or just escape the situation at hand. “Nurse Sandy,” or my mom, trained with my boyfriend for a few days, before he left on his trip. I was even more scared of my mom and injecting me, because she had no experience. The term “Nurse Sandy” was a really BAD joke! At least, my boyfriend was a dentist so he was used to giving injections all day long. I was very adamant about not even looking at the needle piercing my skin…GAG! This went on for several months, and it was probably around mid November that I got the courage to do it myself.

I do remember ONE hilarious story concerning my meds. To increase my appetite, my doctor gave me a prescription for Marinol, (for those who don't know, it’s the pill form of marijuana, pot, weed, etc.) I have never been a pot smoker; I'm actually allergic to smoke! I thought I'd give it a try, since it was in pill form, and anything that can increase my appetite would be a good thing. (When I returned from the hospital after the infection, I was 114 pounds.) After eating lunch, I had my appropriate dosage, and was helped up the stairs by Eddie to take my afternoon nap. I was awakened by the obnoxious sound of the phone ringing in my ear, after a bizarre string of dreams. It was my boyfriend on the line, just checking in. I was already having trouble communicating on the phone, all I could say was “I'm speaking to you, it doesn't really feel like I'm speaking to you”; over and over and over again. Everything was very vivid and clear, but because of the stroke I couldn't articulate these things. My boyfriend was putting two and two together; he asked me what I did after lunch. I responded “I took the “M’ thing for eating!” I always had trouble with medication names, but the fact that I just had a stroke and my current state of being the “M thing” was all I could say. To top it all off, I had no idea that Marinol was a form of marijuana; I thought it was simply an appetite stimulant! My boyfriends said “You’re high!” and laughed out loud. That was all I needed, I got the most extreme case of the giggles, launched myself out of bed, and kept exclaiming “I’M SO HIGH…I’M SO HIGH…I’M SO HIGH…” I really don't remember hanging up with my boyfriend, because the doorbell rang, which left me bouncing off the wall waiting for Eddie to help me down the stairs.

It probably was the weekend (time was a blur in the Penthouse Prison,) my friend Kate was stopping by to check on me. I had a phone conversation, which I forgot about, with Kate about an hour ago (but it seems like it was years,) she was explaining how she would be over later in the afternoon. Eddie let Kate into the apartment, while I’m in the kitchen, where I started to prepare my nutritionist’s favorite snack. I was so full of energy and this made communication practically impossible. I showed Kate the bottle of Marinol, and exclaimed “I’M SO HIGH!” as I dumped a bunch of melting lemon sorbet into a large bowl. Asha Bhalla, my nutritionist, had me on a strict regimen of eating three servings of lemon sorbet with olive oil. I called it “sorbet a la mode,” which means absolutely nothing at all! The theory behind the concoction was that the sorbet made it a sweet tasting, non-filling snack packed with two tablespoons of olive oil, which you really couldn't taste. One serving, or 8 ounces, equaled 450 calories, and most importantly NO PROTEIN. Asha had had me on this regimen before I had the stroke, so I was an expert. I knew that lemon sorbet didn't congeal the way most other flavors do when they're mixed with olive oil; I also understood to defrost the pints in the refrigerator, rather than on the counter. I did have a problem with figuring out how much olive oil I had to put into the sorbet, and that's where Kate came in. She poured the right amount of olive oil into the measuring cup, without ever asking what I was doing, and more importantly why I was doing it. I've been mixing sorbet concoctions for over a year, but no one had actually witness me doing it. There was no way that I was going to be able to explain such high calorie content, sweet tasting, non-filling, and absolutely no protein whatsoever because “I WAS SO HIGH!”

“Betty,” the physical therapist, was only there for three weeks; that was all that her contract would allow. I really missed her stories of her cats, and her community garden anecdotes....NOT!; only joking. Laurie, my trainer from Chelsea Piers, and Joan, my yoga teacher, both came to the apartment for house calls. Eddie, my man servant, was sent out to Paragon, the downtown sport equipment megastore, to pick up an exercise mat, a yoga sticky-mat, yoga blocks, two yoga pillows, light dumbbells, and these stretchy rubber tubing things with handles. I transformed my living room into a Suzanne Somers work out studio. Laurie, as I previously mentioned, came to the hospital before my stroke. She was very used to seeing clients not only at the gym, but out in a nearby park, or in their apartments. Joan, my yoga teacher, hadn’t had a private client in years and was used to conducting her classes in Equinox (play video!) or Chelsea Piers Sport Center.

My first interaction with Joan was when she was a substitute teacher in my first yoga class in 1999. I had started taking yoga in 1997 at Chelsea Piers with a yoga instructor named Nicole. She was very sweet, very diligent, and was absolutely the nicest person. I was lying on my yoga mat trying to decompress my work day out of my life, and Joan barged into the room. She introduced herself and said “I'm not as nice as Nicole!” She was obviously joking, but that's no way to start as a substitute teacher. I would later learn that she has a very dark sense of humor, which now I enjoy very much. The class was fine, but I still steered clear of Joan until 2004. Joan was (still is) offering a gentle yoga class two times a week. I had just stopped working at Gap design; I needed some other activity to keep my mind off my “liver hunt” during the day.

Laurie was my liaison to Joan; she explained how I needed both training and yoga to keep my body building muscle, bone density, and creating more stamina. Joan obliged, but only on the days that were convenient for her. At Chelsea Piers Sports Center, right in my neighborhood, Joan taught a yoga class in the afternoon, afterwards she would come over to my apartment for a one-on-one session. The difference between Laurie and Joan was apparent. Laurie was very chatty; I’d do an exercise and then rest for ten minutes. I was having trouble communicating, so Laurie did all of the talking. Questions of what I ate before the work out, and what I was going to eat after the workout, what exciting hikes she’d been on lately, planning for the future when I could spend more time outside, biking riding and swimming, etc. Joan, on the other hand, was a drill sergeant compared to Laurie. I guess this was my “stamina” training!

Joan had always been very matter-of-fact; she had very specific poses that she wanted me to do in the time allotted. She was used to an hour-long class, topping it off with yoga relaxation, which I fully enjoyed. Joan is probably the most dedicated fan of my writing, so I hope she likes this amusing story I’m about to tell. I was swelling in my ankles at the time, probably caused by the ascites. Joan's idea was to do a yoga inversion; either standing on one’s head, or a modified shoulder stand “a.k.a. Sarvangasana,” which was more up my alley. Sarvangasana has several benefits including “brings more blood into the shoulders; blood flushes all the major organs (liver); helps the veins, and rests the heart and capillaries.” A true shoulder stand is when the arms are engaged, a modified version is when you put your legs up against a wall. It sounds easy, but it's not, and try doing it with a 39cm tube running up your left arm! My hamstrings were always tight, and in my present state I really wasn't in the mood to be doing splits, “OUCH”, not that I ever could. This was a major hamstring stretch, IF you positioned your butt right against the baseboard. Like I said it looks using, for a majority of females, guys have tight hamstrings, that’s a fact.  

The funny part of the story; is that Joan went off on a tangent, for some reason. It was very unlike her, but I was having so much trouble getting into position. I had my butt propped up on a throw blanket, which wasn't working, then a “yoga” pillow, etc, etc. When I finally had the position, or should I say, when Joan was satisfied with my position, and that’s when I realized I was wearing some unfortunately revealing shorts. Joan was born in Singapore; worked for IBM in France; gave cooking lessons to hippies in the ’60 in Aspen, Colorado; and at one point she was teaching yoga to Orthodox Jewish women in an upstate New York bungalow colony. To say Joan wore several hats, FAHGETTABOUDIT!; she had a container ship full of hat boxes!!! Orthodox Jewish women and yoga really don't compute. They're always wearing skirts, and wigs or scarves to cover their hair. Joan, obviously isn't an Orthodox Jewish woman, and when she asked them to get into shoulder stand position, she was a little disturbed by their hairy legs, and lack of bikini waxing. The women were totally fine doing yoga, as long as there weren’t any Orthodox Jewish men around, regarding showing their legs and a little bit too much below-the-waist hair. Joan taught the class for the rest of the summer. The story was supposed to make me feel at ease, but it did the opposite. What did I expose to Joan to make her think of that story? What did I and a bunch of middle age Orthodox Jewish women have in common? As a result, I switched to yoga pants for of the rest of our one-on-one sessions. Fortunately, I couldn’t find any pictures of Orthodox Jewish women doing yoga in a bungalow colony on Google images, so I substituted Jelena Janković, the trendy Sebrian tennis player.

Even though this chapter is called “homebound,” I made a few attempts at doing something cultural, besides my regular doctor's appointments and tests at the hospital. It was now the end of July 2005, and Eddie had left me, thankfully. My parents had taken over, my mom was continuously feeding me, reading Good Housekeeping, or doing word finding games, and my dad was either reading the New York Times, watching the Yankees, or taking Max for a walk around the block. I found this so monotonous, it can't even be explained, but my parents were perfectly comfortable with this, that's how they existed now that they were retired. I wanted to shake things up, every year around this time I would get tickets for Pilobolus, a modern dance company, at the Joyce Theater. The Joyce is THE modern dance theater in Chelsea, and Pilobolus is possibly my favorite dance company of all time. Every summer I make it a tradition to get tickets to one of their shows, usually with at least one world premiere dance in the program. One July afternoon, after my weekly appointment at my doctor with my parents in tow, I made the cab stop on 20th Street and 8th Avenue, rather than going home (or rather, instructed my mother to tell the cab driver.) That was the location of the Joyce box office and theater. My father paid the cab driver and my mother helped me out of the car. Rather than explain what I was doing, my dad opened the door to the theater, and I went straight to the box office. All I really needed to say was “Pilobolus”, which to my surprise I could remember. Then I remember saying “Friday”, that was a perfect day that my boyfriend could go as well as my parents. Once I had the printed schedule, I could decipher which were the world premiere dances, because they had a little “*” before each performance. I couldn't really read about the dances, but I had never been let down by Pilobolus before. There was always something to surprise and enlighten me. Low and behold, my boyfriend couldn't make it that night; he either had a “last minute” dental convention, or was traveling in to Miami to see his mother, on the spur of the moment?! So it was my mother, my father, me, and my computerized pump connected to my sugar-water bag, with its Jacks Spade-inspired carrying case. I also brought a long a heavy cashmere sweater, because the air-conditioning left it so cold in the theater. In actuality we didn't have room for my boyfriend!

(Before I continue, my parents experience with dance was basically Swan Lake and the Nutcracker Suite, just to give you an idea.) I would describe Pilobolus as being very whimsical with bit of sensuality, regarding the movement of the body. The first dance I had seen before, it was a beautiful duet of a man and a woman, most likely about them making love, but the viewer was into the moves relating to balance and strength by both participants. In the second dance there were five participants, and this was definitely more about Pilobolus’ whimsy. The music or score was more of something out of a circus, but nothing like Cirque du Soleil, more like Barnum & Bailey with skin tight spandex! The second act there was just one dance, Pilobolus: Aquatic, the world premiere at the Joyce in Chelsea! This stage was dark, but when your eyes finally got used to the blackness, out you could make out the 10 dancers. The music; or more like the soundtrack up dripping water; resonated throughout the theater. As the lights went up you realize that there was a sheet of water on the stage, and the dancers were frolicking like dolphins IN THE NUDE!? My parents hadn’t gotten the memo regarding when you see a Broadway play there's always a character that’s naked at one point. They were definitely shocked when they saw ten frolicking “dolphins,” male and female, on stage, about 20 feet away, and intertwined amongst themselves. My father was speechless, and the only thing my mother had to say was “Well...that was different!”, as we walked down the street back to our apartment. I was just trying to give my parents something cultural, but it looks like I gave them CULTURE SHOCK!

In mid August, my boyfriend’s niece from Brooklyn was staying with us. Her parents were on vacation, and what a great way to spend a week in your uncle's apartment with his AIDS stricken boyfriend recovering from a stroke?! She was a sophomore in college, and had an internship during the day. My parents were in upstate New York, RVing on Lake George, and it was perfect timing for the niece to come stay with us. It was a Thursday; I was finishing up doing yoga with Joan. All of a sudden the intercom rang, it was Leandra? She usually took my blood on Fridays, weird! I had to wait for Leandra to set up shop on the dining room table, and then proceed with Joan into my final relaxation. This was the first time Joan and Leandra had ever met, there was way too much to explain, so I just kept my mouth shut. I forgot to mention that I'd hired to chef to prepare meals for me. Eddie was useless in the kitchen, and I needed someone to prepare lunch, dinner, and a snack all with only 40 grams of protein for each day. Chef Jason was an excellent choice, he created succulent and satisfying sauces, and what he did with vegetables was unworldly! Jason was also a student of Joan’s, and when I learned he could do a one handed leg lift, I was sold. Chef Jason was also in the apartment, silently sorting out the fresh vegetables he just bought at the farmers market. So quiet that Leandra didn't even know he was there, and she gasped when she went into the kitchen to get more alcohol swabs! I finished up the yoga, and Joan was more interested in what Leandra was doing, AND more about what she was wearing! They were occupied at the dining table, Chef Jason was in the kitchen, and the intercom rang again. It was George, I told him he could come by right after I finished with Joan at 4:30pm. George had seen it all, he was totally unaffected, said his hellos, and proceeded to the second floor terrace, where we usually had our sessions. At that point, the niece swooped into the apartment. Not as glamorous or fabulous as Madonna’s, or P. Diddy’s, or J. Lo’s, or the HBO’s series “Entourage.” (“Entourage” happens to be my boyfriend's niece’s favorite show, by the way.) Yoga had ended, and I turned on the sound system (with speakers in all of the rooms of the apartment, including the bathrooms,) because Chef Jason loved to cook with his tunes. Joan was hanging out in the kitchen having a glass of wine, from where I don't know!? Leandra was done taking blood from me, she packed all her things away, and I joined her at the dinner table with a freshly cooked snack from Chef Jason. Simultaneously, George descended down the stairs asking when I was going to join him on the terrace, and the niece thought I was having some sort of a party? A tad entertaining, she thought, but it was actually a distraction for me from life in the “Penthouse Prison.” All these people were joined together to heal me, sustain me, and most importantly keep me sane. What I didn't realize that I hadn’t been alone for a single moment since I got back from the hospital. I needed human interaction, and what I didn't realize was that my life depended on it.

My parents had this great idea to take me camping in Vermont in late August. All of my travel had been on the island of Manhattan for the last year and a half between my apartment in Chelsea and the NYU Medical Center, which according to MapQuest is a distance of 2.09 miles, with a travel time of 6 minutes? I had gained some strength over the summer, but I wasn’t 100%, it was more like 27 1/4%, just a ballpark figure. My boyfriend thought this was the greatest idea. He arranged a car service to drive me 3 1/2 hours in a Lincoln Town Car, with 10 days worth of TPN fluid packed with dry ice in a brand-spanking new Coleman cooler. It wasn't completely tragic, but close. What could've been a great escape camping in Vermont and tubing in a nearby brook, away from the confines of humid Manhattan, ended up with me huddled up next to the camp fire with layer upon layer of polar fleece all day long.

Leandra wasn't about to make the trek up to the mountains, so my dear boyfriend arranged a home nurse to come visit me back in Schenectady, NY when I returned from Vermont. There were two of them (the home nurses), I should've sensed it was going to become a problem. Then one of them figured out that she'd gone to high school with me, AND she was four years my junior? YOUNG+HIGH SCHOOL=TROUBLE! It reeked of "Superbad" the movie! The older nurse was only there to supervise, and that was another problem. I don't want to drag this one out, that high school nurse swabbed when she should have been injecting, or injecting when she should have swabbed. THAT INCOMPETENT BITCH GAVE ME AN INFECTION!!! Within twenty minutes, after the home nurses had packed their “lunchboxes” and left, I’d laid down on the couch and my temperature was 100F, and steadily rising. My mother paused, took a deep breath, and called my boyfriend, the only doctor in the family. She knew that I needed to be taken to the hospital immediately, but which one. My boyfriend explained that I should be taken to Albany Medical Center, the premier teaching hospital in the area. My father was complaining because there were two hospitals in Schenectady within a 10 minute drive of our house, but my mother got her way, as always. I was lying down in the backseat of the car with a thermometer wedged into my mouth, and tears running down my face. Within 35 minutes, on the way to the hospital, I watched my temperature rise four and a half degrees to104.5F. I didn't want this to be a reenactment of Memorial Day, and I was scared because it was a new hospital. CHANGE=FEAR!

When I was ushered into the examination room I was hyperventilating and crying simultaneously. I did not want to be admitted, I was giving up. Two hours earlier I was planning on spending the afternoon with my parents on the bike path along the Mohawk River; it was a beautiful August day in upstate New York. I yearned to be normal, but I would have to wait. My mom was a rock, and she'd been through this once before. Always prepared, she brought my spreadsheet list of meds, and explained to the doctor what had happened with the nurses. She walked straight up to the doctor (Rambo style,) and looked him directly in the eyes, and said, “TAKE THAT TUBE OUT OF MY SON NOW!” I was having such a severe panic attack; I don't remember what happened next. I either passed out or was sedated; or both. The next thing I remember I was in another room, which I thought was my hospital room. What I didn't know until much later, was that Albany Medical Center had its ER totally renovated. As opposed to a NYU’s emergency room, there were rows of gurneys separated with flimsy curtains; each patient had a private room with a toilet and cable flat-screen TV! It was like I died and woke up on the set of Grey’s Anatomy. I probably was sedated with happy pills, because I was in love with this hospital. I was willing to spend my entire stay in the ER, but I was told that a room was being prepared for me on a special HIV/infectious disease floor and every room was private. My world was so altered, two and a half years ago I was staying in a suite at the Mandarin Oriental in Bangkok, and here I was being excited about my private room in the HIV floor at Albany Medical Center in upstate New York? The TPN tube was out. I ended up staying there for a full week, being pumped full of intravenous antibiotics to cure the infection. No ICU, no ice bed, no Jersey Shore interns, just me watching the Travel Channel. My parents came every day, both of my sisters were there as well, and other visitors came pouring out of the woodwork. But the private room ended up being lonely; I wanted to be back in New York with my entourage, and my boyfriend.

Dr Louie was on call the entire time. The doctor in charge of me was a younger Chinese guy, kind of like junior Dr. Louie; he had a band of interns surrounding him. Maybe somehow, I channeled it down to New York City (through Exit 23 down the Thruway) that I HATED the TPN tube. What started out as this great idea in April 2005, with its computerized pump and “ Jack Spade ” messenger bag, had turned into this monster of an annoyance which is very difficult for me to shower, and impossible to swim. My prayers were answered by the junior resident. The TPN tube would be taken out permanently, after I had two weeks’ worth of antibiotics for the infection. There was one minor detail I forgot, the TPN tube had been out of me for a week. The plan was to put the TPN tube back into my arm, release me from the hospital, send me off with two weeks’ worth of liquid antibiotics, and my own personal drip stand with the squeaky wheels on the bottom. I thought this was going to be a breeze, so to speak. A month before I had to have my TPN tube replaced. There was something wrong with it, and I can't remember what it was. My mother was staying with me then, and she escorted me to the hospital. I was lying down in the operating room, totally awake, no sedatives, no anesthesia, and within seconds the entire tube was pulled right out of my arm. One of the doctors asked me if I wanted to take a look at the 39cm tube which they just yanked out of my arm, soaked in blood, and warm. I replied with closed eyes, “Noooo thank you!” The key to this procedure was the old tube was extracted; while another doctor was waiting with a new tube to stick in the same artery which had already been expanded from the previous tube. I had it in my mind that this procedure was going to be the same as a month before.

Apparently, there was some Adirondack white water rafting accident and all the operating rooms were full, just my luck. I was told that they were going to insert the tube in my private hospital room, and I was given the option of taking some kind of a sedative. I was a warrior, I needed no sedative. I'd survived a liver biopsy, a drainage tube tangled up in my intestines, a stroke, etc., etc. They had me situated on the bed so that no one could hold my right hand because it was facing the wall, and my left arm was ground zero. I mention this because both my sisters and my mother were watching the whole thing all with grimacing faces. My father was nowhere to be found, he does not like blood. I imagine him all the way down in the parking lot with the car on, and listening to a Yankees game. I felt every single millimeter of that 39cm to as it was being painstakingly inserted up my arm. I really felt the pain when it reached my shoulder; the tube basically turned 120° as his extended towards my heart. There was a lot of take a little bit out, put a little bit in, to get around that turn. (Don’t even make me go there, this is a family oriented website!) I was sweating bullets at this point, and the two doctors didn't really seem like they had it together. I imagined one of them saying, “I was in ninth grade homeroom class with you, OMG!!!” It was finally over, but the pain stuck with me for a few days. For the following two weeks I never lifted anything with my left arm, and was very sensitive about it.

Oh, by the way, did I mention it was August 29, my 35th birthday!!! My family had brought a cake, I received a lot of cards and flowers, and my sister Debbie was so obsessed with balloons, just because they didn't allow them at NYU, some terrorist’s thing. Low and behold, my boyfriend finally showed up, right after the festivities were over, I'm talking about the new tube insertion. The plan was for my boyfriend to take me back to New York. This was a Sunday, and Dr. Louie wasn't in the office, and I was told I had to stay another night, be monitored, and have my blood tested in the morning. I WAS FUMING!!! Patience was so not a virtue; it was more like my ATV printed, diarrhea filled soaking diapers! My parents had to drive me back to Manhattan the next day. In my apartment, I brought my parents and my boyfriend together and said “I'm still 34, I will just wait until next year and will have this all over again, without a week stay at the hospital, the TPN tube, and the worst birthday I ever had in my entire life ever!!!”