I posted this on aidsmedsunder the title How I was diagnosed, disclosed, and met my boyfriend. I am up straight more than 24 hours working nonstop, losing circulation in my legs from sitting, ankles swollen, I took a couple hours and wrote this, cried and shook some. I kept going back and revising, finally this embarassed me, so I put the full version here. Maybe I should update there too, what the hell....
No one told me to get a HIV test. Because I am a woman, I have a good job, I look good, i don't do drugs, I don't fuck around and had good boyfriends with good jobs. I should mention that I used condoms almost all the time, even in long relationships, because I didn't like taking birth control pills, I thought they were not healthy. I knew about HIV. I talked about it, I asked every person I ever slept with about it, was careful not to have sperm in my mouth (sorry if this is too much information). I only had unprotected sex with 3 guys, longterm boyfriends in the last 10 years (and before that was tested and two years celibate, then tested again without having sex). Even with my boyfriends, unprotected sex was rare, because like I said I was not on the pill.I started having small infections that didn't go away, candida that resisted treatment, sores that didn't heal, bumps on my skin, bleeding gums, nose bleeds, dry skin, ulcers. hairdressers commented that I must be eating poorly, the dental hygenist accused me of neglecting my gums, elthough I floss daily. Small things, nothing serious. This went on for a few years. Got slowly worse. Some syptoms went away, came back, all of a sudden I had all of them, as well as watery diarrearah that went on for months, but by that time I was used to it. I was used to the fatigue, I was used to feeling strange, it became a part of me, I thought that this is just my disposition.After a long lonely period, and more than a year without sex at all, I met a guy in the Netherlands, fell in love, we planned to move in together, I notified my landlord and flew home to see my family for 2 weeks. I had a routine blood test at the clinic, as I did every year (at the time, not being insured in the Netherlands), my white cells were even lower, despite a year of taking B12 supplement. The clinic wss packed with sick people, it being january. The nurse, a Russian matron, complained that I have just on entry point. I laughed. "One is enough", I said. In love, glowing, invincible. She shook her head knowingly, "one is NOT enough, you will see one day". I went to the gynecologist, he knows me since the abortion I had 9 years before (I switched gynecologists after that previous one prescribed a contraception that didn't work and I got pregnant and all he did when I returned was shrug and refer me to an abortion). I told him my candida just doesn't go away despite treatment, he had a look, told me it was fine. I told him, my BF doesn't believe that candida is harmless, is afraid of getting it, can you write me a reference? He laughed. He said, I can write you anything you want, bring it over, I'll sign it. Candida is normal, sometimes goes out of control, can't pass to your BF, but if he wants to use a cream, no harm in that if it makes him feel better. There is nothing wrong with you. Wanting to surprise my BF, I asked for a Pill prescription, I thought, the candida will clear and we make the love of the century in a month from now. I said, can you give me a reference for a HIV test?I looked at the reference, I realized that the result would arrive when I'd be back in the Netherlands. I decided to wait and get tested with my BF. We were talking about testing together, making a day of it, it seemed romantic. My dad is a doctor. He knows the doctor who referred me to the blood tests. She called him, expressed her concerns, said I should retest before I leave, maybe it's a mistake, maybe... she didn't want to say cancer, but it was understood, as they are both doctors. My dad, although a doctor, actually because he is a doctor, doesn't like to be involved with family health, since for years we have accused him of being a nagging worrywart. He told me I should get retested. I was like, leave me alone, i am going back in 5 days, I can't be bothered, there is nothing wrong with me, I am fine, always fine. I ate raw meat in Burma, I slept in a Thai jungle, I swam in the Mekong, I never bothered taking anti-malarias, I bounced back from dengue fever. Nothing happens to me.He said, I will do it myself, please (remember we are not talking about HIV at all, just a bunch of counts).I didn't want to do another test. I was childish, stubborn. The next evening I was in a bar with a friend, I looked in the mirror, I thought, "something is wrong with you, you don't look right". It was not because of the blood results, I didn't even think of that. It was something in my face. Something in how I felt, as though I was not actually there, as though something was happening to me, my face in the mirror looked transparent, not pale, but as though I was somehow not there, I felt like a ghost, like I was slipping away, fading out, I even said to my friend, I don't feel right. Oh, are you tired, catching a flu? No I am not, and I didn't feel sick either (and no, I didn't drink, was driving that night).I left a note for my dad, next morning, he woke me up at 7.00 to take my blood (I have tears in my eyes as I type this). I was sleepy and grumpy. He was amazingly skilled and gentle (and I have awful veins as i mentioned). As he was about to leave for work, I said, Oh, dad, can you ask them to send it also for HIV? My dad looked embarassed, as any man would be in such a situation with his daughter I supposed. I swallowed my embarassment, because I knew it would take a long while to short out the Dutch insurance and that I couldn't test with the doctor reference and get the result soon enough. I needed my dad's contacts to get a rapid result. I didn't ask for HIV because I thought I was positive, I was sure that I wasn't positive. I wasn't nervous, and after my dad left I went back to bed and slept. i woke up at 10.00. My mum told me that my dad called, and that I should call Dr. X after 13.00 and he would have the result. She didn't know what result it was. I wasn't sure if it was the HIV, or all of the results. I was not worried about my health, I did the counts as a courtesy to my dad, I didn't want to leave him worried. I did the HIV as a gift to my boyfriend and to myself.At 12.00, I got nervous. I have a photo album in my childhood room. I looked at the pictures, me all over the place, friends, boyfriends. I looked at me, I started looking at the guys. I got nervous, but I knew that I had safe sex with them, mostly. I still was nervous. I went downstairs, opened the fridge, got somehow annoyed with my poor mum, couldn't stay at home. Took the keys to her car, drove off. Stopped two minutes later to call and apologize, said I was taking a drive. Called my friend from the bar, but he wasn't home. Drove to his home somehow, not thinking, stopped the car in a bus stop, opposite the beach, dense noontime traffic. January, but a hot day. It was 13.01, called the number.A secretary. She called him. He took long minutes to arrived. I realized that my heart was thumping, my throat was dry, my body was tense, I feel it now as I type.His voice on the phone, sounding strange. He called me by a wrong name, and I corrected him, as though that mattered. I could almost count the seconds, and then I heard it."Can you come here, we need to do another test?".I don't remember what I told him. I understood, I tried to beg him to tell me. He refused. I cried, insisted, he refused. he gives me instructions, I ask him to repeat, he repeats, I register nothing. I drive there, not knowing how, not knowing my way, through the narrow streets, the dense traffic, hooting cars, traffic lights, pedestrians crossing everywhere, like a lunatic, I could have had 20 accidents, I was smoking, although my mum doesn't allow smoking in the car, I was shaking, I was praying. I was repeating the same line of a prayer again and again, I am not religious, I don't know any prayers save for this one...My hands are shaking so much as I type this, I can barely strike the keyboard.At the entrance of the hospital, cars converge into a line for the security checks. I stop, dazed. I pray. I smoke. I mutter to myself. A taxi driver, fuming at the mouth, gets out of the car and all but hits me, cursing me for falling asleep at the wheel. Bystanders look on, the security guards say nothing. I drive past them, past him. I want to say something, but I can't.I don't find a parking spot, the hospital is a city within a city, cars, ambulances, visitors, patients in pygamas, families, old people, children, I am alone, I have AIDS, I am a ghost.I somehow find a spot in a lot behind the hospital, by sheer chance not denting the car. I leave it there and run. I wander around the huge complex, can't find the ward. I go to the information desk, there is a man and a pregnant woman, I want to be them, I want to be anybody on that floor, any dying patient, anyone but me.The information desk clerk gives me a knowing look, explains, I walk, I reach the place, I am buzzed in.The doctor is religious. He looks like a Rabbi. He is old. He is not what I expected. A nurse comes, they let me sit in a big arm chair, it is a room with hospital beds. I am in a hospital, I real hospital. there are IVs, there are sheets, there is the smell.... One minute I am in love, I am so happy, I become a woman, finally like all the others. In a second, this. I have crossed over.They take my blood again, I am shaking like I have never seen anyone shake, shaking like a tree in a storm, I don't know how they manage, they have to grab hold of my arm together while my body just palpitates, it is like epilepsy.The worst thing is, they won't look me in the eye.They explain that sometimes there could be a mistake in the lab. Wrong name on the sticker.But my DAD wrote the sticker!He doesn't look at me. There are procedures....I ask him if he believes in miracles, I try to catch his eye. A miracle for me is keeping my boyfriend, that's all I can think about. I don't think about AIDS. I don't think about health. I think, no one will love you again. I think, God hates you. He says that of course he does, I am making him uncomfortable, he looks like he wants to run out of there.They ask me if I want to drink. I am collapsed, crying like a child, folded over. They ask me if I want to call someone. I call my boyfriend, but I don't have calls abroad. I call my mum, because I just took off with her car for 3 hours. She sounds normal, not worried at all. In a second I shatter that. I whisper, "mum, I am at the hospital, the result is not good"."Not good...", she repeats slowly, trying to understand."They want to do another test, but the results are not good", I say. I hate myself, I have never ever hated myself so much. I want to die because I am dropping this on her, and I want to die because of the slight relief that flashes for a second."I will call dad", she says, "don't worry, he will come. Where are you?"I tell her. She calls my dad.The nurse asks me if I want to lie. I lie on one of the beds, a hospital bed. The sheets are cool, she covers me with a blanket, turns off the light. She strokes my back, pulls curtains around the bed, then leaves and closes the door. I am huddled in the bed, my knees against my chest. I am crying. I am alone in a hospital bed in a dark room on the second floor of a huge hospital, I have HIV, the sun is shining outside, people are crowding the streets, and my life is gone, I am nothing, I disappear into a dot, I might even fall asleep, and then my dad enters. He opens the curtain and bends over and hugs me while I am curled in that bed, I cannot remember my dad hugging me in a bed, not even when I was little, I cannot remember my dad hugging me while I cried. One second I am a woman, going about my business in the big wide world, the next I am this, I have slipped back to a time I can't even remember.I am so thankful he is there.They come in the room, whispering, turn on the lights. I am summoned for a Western Blot, the second Eliza was positive, no surprise there.A WB takes 2 days to get back from the lab, but because I am due to fly back in 3 days (and move in with my boyfriend!!! my head screams. And be finally fucking normal for the first time in my life!!!), they draw blood also for a CD4 count and VL. I don't feel the needle pricks, I don't feel a thing.I take my dad's mobile and call my boyfriend. I tell him. He stutters. I tell him that the doctor said that he will be fine, we had sex with a condom.I can't recall this conversation, but it is a lost cause. Perhaps I can't recall it because he is not important anymore, thank God. But at that moment. All I think about is him. I call him again from the car, and my dad stops on the highway. We talk, and all I care is about calming him down. It is not possible, and that day he throws out all my clothes.When we reach the house, my mum is standing inside, looking lost, looking as though she just stood there since I made that phone call. The three of us hug in a small, tight circle. We stand like that for a while, choking, and then we break up. It is as though a bomb was thrown into the house, it is as though someone had died. Every detail in the house is illuminated and charged, as though I have been blind but now I see. This is it. Reality. I have been oblivious, but now I know.My dog is still alive, she is 18 and she is blind and deaf and looks like an arthritic black rat, and she still has some blind instinct to stumble out of her basket and approach me. And thank God that she is still there, because all the nights, every night, that I cannot sleep, I go to the basket where she lies, breathing heavily, wrapped in a smelly towel, and I bend over and stroke her and tears stream freely onto my face, and that is the only time my muscles are not contracted, my jaw is not set.The next day I go to the hospital with my parents. I haven't slept all night, just chain smoked. They didn't either. The Western Blot isn't in yet, but the CD4 result is. I have 77. I have 20,000 VL. I am told that I have had HIV for a long long time, I am at the edge of the abyss and the doctor won't let me fly back, but I insist. He gives me prescriptions, I talk about my BF. I am demanding and insistent, obnoxious even. I make him go with me to the roof where there is better mobile reception and call my BF. He tries to calm him down, he tells him I can have healthy children. He tells him he will not have HIV because we were safe, he is sure of it. He invites him to come over and be tested now (it is almost New Year and everything is closed in the Netherlands, his doctor told him he would have to wait for weeks for a result). My dad wants to fly him over, I spent yesterday's afternoon booking a flight for him, at an exorbitant holiday season, last-minute rate, but he refuses. He refuses to talk to me, but he is happy to talk to a doctor. The doctor tells me, eyes again averted, that if my BF will not support me, maybe he shouldn’t be my BF. I vehemently defend him. I am filth, he is my only redemption. I fight for my right to be humiliated. I fight to get on a plane. They explain that I might get sick from the Combivir and dizzy from the Sustiva, that airplanes are not ventilated, that Europe is freezing and I have no health insurance there, that I could catch any number of things, that I am very lucky to be still walking around. To their credit, they don’t mention the fact that I am already an AIDS patient. They refer me to an eye doctor, to a chest x-ray, to an EKG, to this and that. On each application, it says HIV. One each application, there is a yellow sticker with a red biohazard symbol. They vaccinate me against the flu and PCP, and start me on heavy antibiotics. I have to take them until further notice, if I don’t take them, I will die. They keep mentioning how lucky I am. They keep saying “another day, another week, and you would have been severely ill”. I don’t hear them. They keep saying what sheer luck I had to be accidentally diagnosed like this, and wish that I had collapsed and died on the street in the Netherlands, and spent the rest of my days in a coma.
They get their way. I call the airline and delay my flight by another week. I send the first of many emails, canceling things I was supposed to do that week.It is the hardest week of my life so far. I call my boyfriend every day, sometimes more than once. He never calls or emails. The calls get worse and worse. He says I should forget him. He says that he loves me, but that it is over. He says that I should call my landlord and tell him I am not leaving after all. He says that I should stay away and take care of my health. He says that he is not strong enough, and that someone else will appreciate me. I laugh bitterly at this. Between calls, I sit on the porch and smoke, wearing the same clothes. Whenever a neighbor passes by, I crouch to avoid detection. I don’t eat. When I turn on the TV, I see couples and families and freedom and health and potential, all the things I don’t have. When I open the newspaper I see the same. I access The Body for the first time. It is depressing, gray and gloomy, packed full of sinister information. I look through the Ask the Experts section. It brings no consolation. The answers are matter of fact, the terminology immense. I write love in the search box. I get a few hits, but nothing that I have a use for. One evening, when my parents are away, I call a mental crisis hotline, talking quietly as if someone was listening. A middle aged volunteer answers. My problem is too difficult, she all but hangs up, wishes me health. I call an ASO. A guy answers. He is friendly but distant. I imagine he is gay. I wish I was gay. Then I wouldn’t be alone. I wish I was a lesbian, then I wouldn’t get this. I wish I were dead. I start imagining jumping off buildings, overdosing on pills. These are soothing thoughts. Ironically, they keep me alive. The option of death is the only thing that makes life just slightly less unbearable.
The initial closeness I had with my parents evaporates. My dad goes to work every day, comes home late, but my mum is there almost all day, every day, and she can’t look at me. I can’t look at her either. I move between their rooms, go out, smoke, come back, open the fridge, take something, eat, put it back, go out, smoke. This is the house I grew up in. I should have become something, I almost became something, I stumbled and fell so many times, got my life together, and now look at me. I am ashamed, ridden with guilt. I know that I am breaking my parents. When they go to bed, I breathe a relief, staying up until the morning. I steal Xanax and Lorezepam from my dad’s drawer, but I don’t take them, I just hoard them. I am still struggling. I think about my boyfriend constantly, every second. As tormented as I am by his rejection, to the point that I sometimes feel as though I my loins are crushed, I somehow know that if this agony diminishes, something far worse will take hold. I get tastes of it whenever I try to sleep. The daytime restlessness and misery are nothing compared to the hollow, screaming panic that visits me at night. I get up, drink milk and smoke. Check on the dog and smoke, walk around in circles, pray that my parents are sleeping. I sometimes hear one of them get up and know that they sleep poorly, if at all. If one of them goes downstairs during the night, I am filled with resentment. I am trapped in this house, I am trapped in this life, in this body, and the only thing keeping me alive is my guilt towards them.
I fly to the Netherlands on a night flight, leaving at 03.00, completely disoriented with Sustiva, sitting next to a couple with a baby, I will never have a baby. The baby sleeps quietly, it looks like an angel. I am one of a kind on this plane. I am not alive. I am a ghost. I am unable to leave Amsterdam airport, I walk around in a daze while the airport fills with the bustle of the morning's travelers. I cannot get on the train. I cannot leave. I cannot talk to anyone. Finally I call my friend in another town and ask to come over. I take trains, smoking illegally on the platforms with teenagers, talking, but dead. I can’t listen to music or read or sleep, so I just sit and stare at the world, seeing nothing, being nothing. She picks me up at her town's station, takes me to her house, her 3 children. I will never have children. I smoke in the garden. The children are unusually quiet and well behaved. They feel something. For a brief moment, I collapse and cry hoarsly on her shoulder while the children look, wide eyed, amazed, innocent. A neighbour is summoned to look after my friend's kids together with her own while my friend takes me on a taxi and the train to my destination. She looks at me, and there is no small talk. It is the heart of suburbia and I am outcast. I have lost all chance of ever even pretending that I could fit in there. My friend brings me to the apartment I was supposed to evacuate. The matress on the floor, the tiny room, the footsteps of the couple upstairs, a coffin for 350 Euro a month. I stay away from work, the city is empty and freezing, I sleep fitfully, I chain smoke, I call my BF, not referring to him as my ex yet, and he comes around, kisses me with clenched lips, takes off his clothes and some of mine and runs away, disgusted. He screens my calls, he switches off his phone. I walk to his place in the freezing darkness, he doesn't open the door. I fly home. I chainsmoke and tell my friends. Speak to my brother, who knows from my parents, for the first time. I get retested, my cells are at 130, VL 600. I meet some AIDS activists, I meet a positive guy with lipo and a lust for life, I meet poz men online, and start a witty, uplifting correspondence with a middle aged American. I am scared shitless of going back. I cancel a lot of stuff from work. I come back 2 weeks later. Again a night flight. Still no insurance. Handback packed full with meds, I am stopped by customs. I tell the young officer I have a chronic disease, he backs off apollogetically. I go to see an apartment that night, it is freezing, I am tired and jetlagged from a Sustiva night flying. The guy who is leaving appears on his bicycle. We go upstairs to the room. It's in an attic overlooking a canal. The house is shared. I cannot face new people. I cannot live in this buidling occupied by young careless ambitious hopefilled people. I am too tired to leave, so I stay, have a tea, bumm a cigarette. He is Spanish, older than me, big, warm, funny. We don't talk about anything, but we communicate. He makes me call my landlord and tell him I am staying yet another month. He makes it simple. I am scared of my landlord, he told my previous roommate that if she doesn't evaccuate he will put her stuff on the street and change the locks, and while I was gone put a new girl in the apartment. He is a big bully, but the private housing market is tiny and the demand is huge, it is not just a question of money. It is a question of money, willpower and luck, which is not on my side.I walk the long way back to my room, through the city, past the park. I put my mobile on the desk. The room is dark, the house is empty. There is no one to call. There is nothing to do. No internet. No TV. My hand reaches to the phone. Without thinking, without feeling, I call the Spanish guy. He sounds surprised. I don't know what to say, I don't even know why I called. I hear myself saying: "do you want to go out sometime?".