One Day in the Life
March 21, 2002
The USA recently gave the island $14 million for AIDS awareness, and during my vacation in February, I met a doctor and a supervisor for an AIDS Hospice. Since being at Body Positive, I've learned so much and stretched my wings so far and hope I have helped many people. To give back what I have received is the greatest joy and it has become a passion for me to go out there and inform and educate the public about this dreadful disease, which will be around for a long time to come. Being on the cover of the December issue of Body Positive opened doors for me. I was recognized by many and signed a few issues and beam with pride when I look at one.
8:30 amThe alarm rings, telling me its time to get up! I hit snooze and pray it won't ring again but it does. I turn over and face my hubby who's in a dead sleep. I would kill to stay in bed today. I'm not sleeping -- night sweats and symptoms related to menopause (I'm 49). I drag myself to the kitchen to prepare lemon herbal tea and prepare myself for today. I'm a Peer Educator for Body Positive, and a passion of mine is educating and informing the public about HIV/AIDS and hepatitis B and C. Today, I'm going to Brooklyn Criminal Court for two hours and the ride is an hour and a half. I'll be sleeping all the way. I check in with my team leader hoping I'm listening because I just feel out of it.
12:15 pmI'm dressed and leaving the house, feel a little better, I hope I look better than I feel! While walking to the subway, I pass the pharmacy. I have to pick up my smoker patches. I kicked drugs, so why is it so very hard to stop smoking? It's a month since I came back from Barbados. Maybe two weeks there wasn't enough, because I'm depressed and tired and can't focus on my personal life. Its cold today and I'm projecting how my group is going to be and whether I have enough condoms to pass out after the condom demonstration.
2:00 pmThe group is interested in what John James is explaining to them. Good sign. Also here from the AIDS Center of Queens County (ACQC) is Terrell Blair, a peer education specialist who I must credit. For a young man, he is involved with his work and would make an excellent son-in-law. I have 3 daughters to marry off! Then it's my turn and things went well. I feel better; not 100 percent, but I have a little more will power.
7:00 pmSitting down with a cup of hot chocolate with soy milk, I am writing down my thoughts and getting ready to prepare dinner. After talking all day, the last thing I want to hear is a telephone ringing. If time allows, I want to start a book I bought a few days ago, Positively Women Living With AIDS (edited by Sue O'Sullivan and Kate Thomson). I purchased the book at a book sale and I can't find the time to start it, but I hope tonight I can.
Keith is home at 8:30, dinner is served and finished by 9:20, and the dishes are beckoning me, so let me do them before I sit and don't get up! I get a couple of phone calls -- my Dad, aunt, two of my daughters. Keith showed concern tonight; I'm having headaches but I'm trying not to think about the pain. The NATAP (National AIDS Treatment Advocacy Project) conference is Saturday April 6th, and I have to prepare myself for that day because the Oldies Dance at Roseland Ballroom NYC is that night. Six of us are going. It will be a long Saturday and I'm tired just thinking about it and what I'm going to wear and how my hair will have to be groomed. I'll be sporting the amethyst and diamond necklace and earrings from Barbados that my daughter and hubby gave me for my birthday.
11:30 pmI'm not sleepy at all. I'm a night person and TV is at its best late at night. I'm looking around our bedroom and see that there is so much that has to be done. We are moving into a house in May and we have 10 years of packing and cleaning to do. I'm excited because I was raised in a house and I have always wanted one of my own but, there is going to be a lot of work.
My menopause, "my personal summer," is starting up. I'm going to get my book and try to read a chapter before I say my prayers. I hope there will be some information I can use for my HIV/AIDS groups and workshops. I know by the comments and thank yous that I'm making a difference, but I don't know how much and for how many people. How long can I do groups before I think it's not working or my mouth gives out or I have no more of me to give? I discuss this with Keith and he just says "think about one day at a time." Take the weight off yourself, its one day at a time! As Scarlet said in Gone With the Wind: "Tomorrow is another day!"
1:20 pm, East End, ProvincetownStopped in for a cup of coffee at Angel Foods, light, airy "upscale" deli, and was startled to hear my own voice; took a few seconds to realize it was my radio program on WOMR. Today's Thursday and every week I have my modest 15 minutes of fame. God, it doesn't seem possible but I've been doing that program for five years, taping every Tuesday morning with a different P'town or Cape Cod poet. Have had more than a hundred poets on over the years. Just had a funny thought for a short -- a fictional radio station on Fire Island called WHIV. It would broadcast round-the-clock music to have safe sex by, sprinkled with anthems by divas such as Ross, Streisand, LaBelle, Summer and Warwick.
Gary and I were over at the condo this morning where we spent six reasonably happy years. Have to clear it out -- the new owners want it broom-clean. We've settled most comfortably into the big new house on Franklin Street. Gary spent 30 (!) years at NBC and that house is the fruit of his labors. He's my best friend -- 26 years. Met me when I was 22. Don't ask what year. Vincent, Gary's partner of 15 years has a thriving dental practice, in Chelsea, he's so damn busy he can't get up here much. But he's coming for Easter.
A friend just passed by in his SUV. I'm sitting in front of Angel Foods, writing. "Loved your letter in the Cape Cod Times," he yelled. I nodded, smiled. It was my op-ed piece about the courageous men coming forward in droves to confront pedophile priests. My own molester was a layman. I was 8. Let me tell you, compared to what I've been through as a survivor of childhood sexual abuse -- HIV's a piece of cake!
2:45 pm, Town CenterJust went into Town Hall to renew the dog license of Andy, my precious Welsh corgi. My thoughts today are with Diane Whipple, the lesbian who was mauled to death in her own hallway by that vicious canine beast in San Francisco. The verdict in the trial of the dog owners -- her neighbors -- comes down today. Candy and I just posed for our picture in front of Town Hall. Candy's one of my best buddies in town. Every week for six years now, we've taken a walk together in to the heart of Provincetown. Candy has lived valiantly for years with Joseph's disease -- only Portuguese people get it. It's more akin to Hodgkin's disease, Candy tells me, than anything else. Candy's a P'town native, she raised 2 kids here, Matthew and Aaron. Both fine young men. Candy has been a muse for my poetry and is always a weekly boost to my spirits. My mother taught me one simple, overriding lesson: to care for and about other people. Have you ever noticed how many folks living with HIV do so many things for other people? Look at all the PWAs who work with God's Love We Deliver, Body Positive, GHMC, delivering food, staffing hotlines, facilitating support groups, planning socials. I really miss the four years I spent delivering food for God's Love. I love working in the Soup Kitchen in Provincetown, though. It's full of artists, poets, drag queens, lesbian house painters and an occasional former porn star. Provincetown AIDS Support Group has its own daily lunches for our HIV community. Every month, I drop Body Positive magazine off at their office. BP has a lot of fans here!
5:00 pm, The A-House Little BarThere'd be no such thing as a "typical" day in Provincetown without my dropping into the A-House "Little Bar." I must have written 50 poems at this very spot. Tennessee Williams adored this place. Eugene O'Neill once lived upstairs. The fireplace in the winter is our own little Olympic flame, a beacon of home: enduring, comforting, inspiring. In the summer time this room is packed with hot gay male sardines, an occasional cluster of lesbians and wayward, adventurous straights.
More than one gentleman who died of AIDS has his ashes stashed here, one in a sack hanging above the bar, one in an urn behind it.
I whipped out my trusty disposable camera on the way over. Snapped my favorite icon: the Pilgrim Monument. It's the tallest granite structure in the USA. Whoopee! It's been for me a lifelong metaphor for personal backbone. I swear that a metaphysical, highly palpable energy radiates from that tower, drawing here those who need to heal, recover, create, grow, lose themselves, find themselves and -- after all that -- just lie on the beach.
11:58 pm, HomeThis is my study, a "clean, well-lighted place," close to midnight. It is a fine room for my restless, anxiety-ridden mind to hang out in: spacious, quiet, full of books and memorabilia. I love it here. If not for HIV, I would not be in this town, in this room, in this fruitful middle-aged period of writing, reflection -- and service. In a recent letter to friends I said, "I have embraced this community and it has embraced me. All I ever truly wanted was to be a Provincetown poet. I can say with confidence that I have fulfilled my life's dream. If there is a Heaven and if I get there some day, I'm going to be a bit blasé about it -- having lived in Provincetown." To get an HIV-positive diagnosis 11 years ago was to be on the cusp of a death sentence. I just love life too damn much, love sex too damn much, love friends and my writing and my dog and my mother; I could live fifty more years and not have time or room to catalog my blessings. I have a saint for a doctor, Alex McMeeking. Gary has been not just a best friend, but a father.
More than one grown man has told me that a poem I wrote made him cry. I have the ability to move people, and be moved by them. So many reasons to forge ahead. We all know the cure's out there. It's been a long haul, like waiting for the slowest subway train in the world, leaning recklessly over the platform and peering into the dark, forbidding tunnel for the faintest glimmer of light. When the light's not there, you tell yourself the train is just a station or two away. You look at two dumb, frisky mice darting about the tracks, wondering why they never seem to get fried by the third rail. They frolic in the most perilous of circumstances and even they -- somehow -- survive.
I have Multiple Sclerosis. My second poem "Handicapable," a declaration of independence for the mobility impaired, was well received at the 2001 International Women's Writing Guild conference and published in BP magazine, the Multiple Sclerosis Society newsletter, and several other newsletters. Although I've had very little experience with AIDS, in my two years as a BP volunteer, it's very rewarding to assist anyone who calls the Body Positive hotline with questions about health issues, support groups, housing, social events, counseling.
I received a BA in English from CUNY in '96 and an MA in Creative Writing from City College in '99. Writing, backgammon and travel round out my life. I've visited many unforgettable places: Hong Kong, Istanbul, The Czech Republic, Monte Carlo, Brazil, Madrid, Paris and most recently Tokyo and Bali. With an ever-ready smile, nearly bald haircut, and motorized scooter zooming down rugged roads, I left a lasting impression on the Balinese people!
First Thing in the Morning ...In a room at the Hotel Intan Bali in Indonesia, sleepily I reached for and answered the phone. An automated voice announced the requested 8 am wake-up call. I dozed off again only to be awakened by another call from a friendly voice advising the 9:30 hour and the suggestion to get out of bed if I wanted breakfast.
I tossed the bed covers aside and tried to get out of bed. Both legs spasmed uncontrollably straight out in front of me and shook my whole body, an involuntary effect of Multiple Sclerosis that happens without warning and mostly when I first get up.
I laid still, waited, and tried to relax; a hard thing to do until the painful throes of a tight muscle cramp in both calves subsided. The spasm lasted only a minute but it seemed so much longer. Since my left leg is especially stiff and difficult to use, I rolled my whole body toward the right side edge of the bed. I used a wooden end table at the head of the bed for balance and leverage, leaned firmly on the table's corner with my right hand, slowly inched both legs to the edge and tried to bend my knees as they gingerly hung in space over the edge. I pressed again on the table's edge to give me more balance and now with the aid of my left hand I tried to push the upper part of my body to a sitting position. My arms are weak but slowly I was able to get my legs to bend over the edge, torso upright and feet firmly onto the floor. I reached for my cane, kept leaning on the wall next to the bed, and slowly walked around a short corner into the bathroom. The bathroom is not handi-accessible and the tub lip as usual is too high from the floor. I sat on the toilet right near the tub and gave myself as thorough a wash as possible. I got a pair of speedos and a tee-shirt out of my suitcase which I didn't completely unpack, put on my sneakers while my roommate, Patrick, quickly showered and dressed. He's a runner and it takes him no time to get it together. I still remember when I didn't have to think about this routine process.
My electric scooter was parked near the bathroom and my bed. I swiveled the seat toward me and plopped my buttocks down without much effort or energy and lifted each leg on to the baseboard to straddle the steering shaft. I backed the scooter out into the hall, with Patrick's vocal direction, and we made our way toward the ramp at the back of the hotel. I'm accustomed to using back-service entrances and kitchens to access my room, the dining areas or pools. We used the kitchen and I greeted the personnel with a "Good Morning" and honked the horn that juts from the side of the mesh-wire basket at the front of the scooter. Lots of people in Bali, Indonesia, have never seen a scooter or even an African American woman. The funny honking sound brought laughter and smiles to all along the way to breakfast.
I had a real treat for breakfast. Patrick found soymilk at a supermarket so I had cornflakes. The soymilk wasn't the same consistency as customary but it was different. I tried some Indonesian passion fruit and rambotan. After breakfast I was ready for a massage. Back through the kitchen, up a steep incline out onto the rugged cobblestone path, I made "oohing" and "aahing" noises on the bumpy ride back to our room.
Midday ...I called the Intan Bali Spa, housed somewhere on the large hotel property and made a reservation for an 11:30 Spa Beauty Salon Special Avocado Body Scrub for Patrick and myself. An hour cost 90,000 Indonesian Rupiah ($9.00). I had enough time to relax and looked forward to this pampering before work. Which, after all, was the reason I was here in Paradise -- as a child I saw the movie, South Pacific, and dreamed one day I would see its beauty firsthand. As an adult, I was disappointed to learn that the movie was not shot in Bali but the notion stayed to visit this place and easily drew me away from the dreary, wintry New York City. My work was to play in the 1st Bali Championship, a backgammon tournament. Several winding turns along the cobblestone road and paths led down to the tranquil tropical garden area. The entrance had several steps. Several male workers came outside and lifted the scooter (about 200 pounds because of two batteries in the back) and I walked in holding Patrick's right arm and lifting my foot, with effort, barely up each step. When we entered the building about 11:45 the receptionist said that there would be more steps to get to the Spa Villa for the massage. She pointed to a path that had three or four steps down, then another path led to another three or four steps down. The manager appeared and I suggested that they have some wooden ramps built for the steps inside and out. The manager said, "I'll take it under advisement." I walked down the first path and rode the scooter to the next path where the workers lifted the scooter down again. Two Balinese women led us into a villa with double massage tables, a garden tub and shower area. We undressed and were given some disposable paper panties. The women helped me onto the massage table, twisted and turned my stiff body so I could lay on my stomach with my head in the rubber donut.
Gentle pressure from the heels of her hands and thumbs was applied over every inch of my naked body. After about fifteen minutes both women helped me off the massage table to the shower and one helped me stand while the other sprayed me to remove the paste. Patrick came to get me and told me there was a surprise for me. I walked outside the room toward the scooter. There were three or four men working near the steps. The manager had gotten two wooden ramps built. A huge smile covered my face as I scootered toward the ramps. A little speed made the uphill climb easy. The workers applauded after I cleared the second ramp. One of the ramps was fitted over the outside steps and I descended without a problem. The manager stood smiling and I thanked him. I told him it had been one of the nicest things that had happened to me in Bali.
Afternoon ...It was now 2:05. I was late for the Last Chance tournament (I hadn't won anything at all and it was my last opportunity to win something) and would get penalty points for every fifteen minutes over the starting time. The hotel van took the scooter and me to the Ku de ta (coup d'etat) Restaurant where the tournament was held. A very nice place with about eight steps out front. The van would let me out around the back so I could use the beach entrance. The only problem was the restaurant was on a platform on all sides and the bathroom was in the Fidel Cigar Bar not easily walkable.
At least four waiters would lift me on the scooter up or down from the platform. I felt like the Queen of Sheba being carried by my loyal servants. I had two penalty points in a five-point match. During the match a kibitizer (one who watches) made some rude remarks and I asked him to leave the table. My opponent then accused me of looking in the dice cup and I had some choice words for him too. Did the change in seasons have anything to do with my flare up? I usually have something flippant to say but I was really angry and showed it. I managed to calm down, catch up in points but lost a close last game. Sadly, there were no prizes for me to take home from this tournament. I had played some side games and lost those as well.
Evening ...The 21st was also the last day of the tournament. It was now 7:30pm and I wanted to go back to my room to dress for the 8pm closing cocktail party but the day had moved along too quickly. Most of the other players were dressed casually as well so I didn't feel out of place.
At 8pm the cocktails and hors d'oeuvres started to flow. I pulled up at a table with some Australians and a friend from Michigan. I questioned the dishes placed in front of me because I am a vegan, that is I don't eat any meat or animal products. I didn't eat much because most of the food was meat or had butter or egg. I called Patrick; we had planned to go to town to SpagettiJazz for pasta and music. I found out that I needed to use the remainder of a $100.00 coupon book before 12 midnight. I bought some tournament tee-shirts as souvenirs and used the rest for dinner at the Ku de ta. I deserted my vegan menu for swordfish which was wonderful. I said goodbye to the few diehard backgammon players left playing in the dim restaurant lighting, made one last visit to the loo, said goodbye to the staff, and rode Betsy into the night.
I completed a master's degree in social/personality psychology from the City University of New York (CUNY) and am currently a doctoral student in psychology at the CUNY Graduate Center, hoping to finish next year. My dissertation research revolves around issues of spirituality, religion, and identity within the gay and lesbian community.
Through my academic and professional work, I have done a fair amount of writing and research on HIV-positive drug users, gay/bisexual men, and men who have sex with men (MSMs), as well as others whose lives are affected by HIV/AIDS. Even though I work in the field and should know better, I have engaged in my share of unsafe behavior and tested positive for HIV in October 2000. I feel unbelievably stupid about having seroconverted, especially after all the work that I have done in the field, but I was young, living in a big city for the first time, hooked on how easy it was to get laid in NYC, and captivated by the whole "bare-backing" phenomenon. (Sex seemed to me to be so much more intimate and exciting if you didn't have to worry about using a condom.) Does that excuse my past behavior? Of course not, but it does illustrate how easy it is even for people who work in the field to get themselves infected despite the "safer sex" and other such messages that they're trying to send out to others -- a hypocrisy that I think about a lot, but am not quite sure how to deal with yet.
Unfortunately, I learned too late that there is nothing intimate or exciting about having four to six tubes of blood sucked out of you every few months, and then worrying about what the results are going to be. Will this be the month that my T cells plummet and my viral load skyrockets? Will this be the month that I have to start taking brutal HIV meds (a prospect that scares the shit out of me)? Eventually that month will arrive -- the anxiety comes in not knowing when. A year from now? Ten years from now? Next month? Only time will tell. Now, every time I catch a cold I wonder if this is the first indication that my immune system has finally collapsed. At any rate, so far my health remains good, my T cells remain stable in the 650s, and my viral load hovers in the "wait and see" range of about 40-50,000.
7:15 amGood morning everyone, it's time for me to drag my lazy butt out of bed and get ready for work. I'm always late for work cause I hit the snooze button ten times before I finally get up and start getting ready. I am thus either inherently slothful, not happy with having to schlep to work everyday from Riverdale to Chelsea, or I go to bed too late. I'm thinking it's mostly the latter as I'm not too inherently lazy (well, I do have lazy moments) and I do like my job.
I stayed at my boyfriend David's place so that I'd be a little closer to work and so I would have someone to take pictures of me today, and also because he made me dinner last night. My boyfriend is a psychologist at one of the large city hospitals (yes all -- I've "married a doctor"). As of today we've been together for a year and three months and are still going strong. And yes, he's a phenomenal cook.
3:00 pmI'm now back in my office writing my next journal entry before I get back to work. Just got back from having lunch at Spiece with my good friend and colleague Paul. In the interest of keeping my day as "natural" as possible (editor's orders), Paul and I roamed up 8th Avenue after lunch, with my instant camera in hand, taking pictures of me doing bizarre things. Natural -- not really, but definitely lots of fun! Today, besides the standard social science project management stuff that I usually do (you know, number crunching, memo writing, meeting with staff and colleagues, etc.), I'm finalizing the annual report for the project that I'm currently working on. I'm the assistant project director and data analyst in the Center for the Integration of Research and Practice here at NDRI. Overall, I'm pretty pleased to be back at NDRI after almost a two-year absence. It's been nice reconnecting with old work friends and colleagues.
However, at times I find working here again to be a bit surreal -- I started back to work here in November 2001, two months after NDRI lost everything in the WTC disaster (they were on the 16th floor of Tower 2). I'm happy to report that everyone at NDRI got out of the there with no loss of life, but sometimes it makes me feel a bit odd working with so many people who were so directly affected by the tragedy when I was so far removed from it in my own life at the time (I was sound asleep at home in Riverdale when the attacks took place -- David woke me up when he called to tell me about it, and at first I thought he was making it all up just to get me out of bed early that day to answer the phone). At any rate, a lot of my job here at NDRI has been simply trying to recreate a lot of the DART project materials that were lost. It's really astonishing how quickly NDRI has literally picked themselves up out of the ashes and got back to work.
7:00 pmMy work day is finally winding down, and I'm getting ready to head home. I've just spent the last few hours getting really, REALLY frustrated over the literature review that I've been working on for school. My advisor just sent back to me her latest wave of edits on my second doctoral exam (i.e., the literature review for my dissertation). I thought that addressing her edits was going to be a piece of cake, but now in order to do everything right, it looks like I have about twenty more articles and book chapters to pick up, read, and incorporate into the paper. Oh well -- no one ever said that grad school was easy. No pain, no gain.
Time to sign off for now and pick up after I get home. David is going to meet me uptown (way uptown!) and we're going to go out and have what I am hoping will be a nice relaxing dinner. Maybe I can talk him into going to Café Belevista, my favorite Italian place in Riverdale -- we'll see. David's not a big fan of Italian food, but sometimes I can talk him into it if I'm feeling the urge for pasta and I cajole him enough.
10:30 pmHome at last! David met me at the bus stop at 215th Street and we took the bus together up to Riverdale where we did in fact go out to dinner at the Café Belevista (a most excellent meal!). Now I'm finally home again, and this is my last entry of the day. Then I have to get my ass to bed so I can get up at the crack of dawn tomorrow and do the whole thing all over again.
As I read through the entries that I've made today, I'm struck by the fact that I've not mentioned, or thought much about, my HIV all day. David says that it's because I'm coping well. I think it's because I'm repressing my feelings. At any rate, I guess it's not too difficult to understand why I haven't thought much about "it" today -- I didn't have a doctor's appointment, I don't get my next set of blood work results back for a few weeks so I'm not getting myself worked up about those (at least not yet), and because so far I've managed to stay pretty healthy. I try to eat right, go to the gym regularly, get enough sleep at night, and don't drink much. If I have a major failing in caring for myself it's that I allow my life to be more stressful than it needs to be. Between work, school, BP board stuff, exercise, my commute, chores, doctor appointments, family and friends I feel really busy, borderline hectic, most of the time. Oh well, once I finally finish my dissertation (which I'm hoping will happen sometime next year) my life should become infinitely less complicated. We'll see. ...
This article was provided by Body Positive. It is a part of the publication Body Positive.