A day by day guide
To surviving the first year of knowing you have aids & HIV
I am starting this guide because I used to think the answers are in books, web sites, ancient wisdom, psychology, religion, and love. But now that I have been diagnosed, about 3 weeks ago, none of these can help me. I can scream and shout, I can ignore it, I can go out and make up my face and look great with all the weight that I lost from the stress, I can beg my ex-boyfriend to come back to me, I can talk to friends and my parents, go to counseling, pray, shop, eat or not eat, exercise or not, but none of that will help me wake up from this nightmare.
I am giving myself one year, in which I will report daily on my trials and tribulations. If by the end of the year nothing improves, or if this guide is completed, I plan to kill myself.
I know there are people who will be sorry to see me gone, and I know that their sorrow cannot be quantified. But I know now that this suffering is not what can keep me alive because my own overshadows that right now.
It is the hardest thing that I have ever had to deal with and I have had to deal with one or two hard things in my life. But from what I have read on HIV-related websites, it seems that this disease strikes at those who are already weakened, those who have reason to be afraid.
I have been promiscuous and taken drugs in my life, and I have the self-inflicted scars and tattoos to forever hide and remind me of it lest I forget who I was and what I did, but I did not contract HIV then. I got it when I had somewhat normalized my life, still I was desperately lonely like I have been throughout most of my life and that’s how it caught me. I got it from another person, and here is the catch. No one will be with me, because they are terrified of getting it, no matter what medical experts may say about the chances of mixed relationships. And is there any other kind of relationship, for women? I wish I was a gay man.
Even when I was at my most celibate and lonely I always had hope that I could reach out to someone and find love and I always believed that this love, which would ultimately result in a family, would be the answer to my pain. I sometimes think that I was born lonely, unlike other people who look back to a period in their lives and find innocence and happiness there. I was born lonely and I was born dirty, and I always associated sex with dirt. It is only when I tried to fight that and make love, when I fell head over heels and wanted to keep what I had so desperately, that I became infected.
I have never had a relationship that lasted more than 2 years, and I am 32 years old. I live right now in a small town in the Netherlands where I receive a salary for writing my PhD. I do not have many friends here, in fact I have only three of them, including my ex-boyfriend that I don’t know if he will be strong enough or willing to stay in touch with me. At home I don’t have many friends either, and they are relatively new. My adolescence is a hazy nightmare and my childhood a lonely void, and I have not kept in touch with anyone from those times. I have not even kept in touch with people I worked with for years, mainly because I felt isolated from them all along even when I was younger and prettier and we would all meet at bars after work and I had a boyfriend and did my BA and everything appeared normal. Unlike many Israelis, I did not serve in the army nor did I travel extensively after it and hook up with my peers. I was busy starting my life from scratch in my early twenties, taking my matriculation exams and seeing my therapist.
I have been in love many times, but not recently and not as intensively as I felt towards Z., that I met accidentally a few weeks before I was diagnosed. It was because of the seriousness of the relationship and the vastness of my emotions that I took the HIV test. Although I have always felt vaguely nervous about taking it, and hadn’t taken it since the remise of my adolescence, I had no inclination that it would be positive. I am sure that someone has said that before, but associating the adjective positive with this situation is in line with the bitter irony that completes the slash of my life into before and after, from obliviousness which now seems so easy, although many years were definitely hard, to a situation in which I feel myself enclosed in a bubble of pain, to which I wake up with dread even from the worst nightmare.
It’s not even that I want to be honest, I just can’t lie anymore, I can’t ignore the pain that is ripping my guts, shredding my heart, filling me with overflowing dread and fear. I don’t fear the progress of the disease or the side effects of the drugs, although those are nothing to look forward to. I fear the loneliness that is already enveloping me and is much deeper than any I have known. I could always choose, although I wasn’t aware of it, whether to be lonely or not, what to reveal to who, to seek some solace even in the troubles of others. It is the first time that my own troubles have totally overwhelmed me.
What the hiv diagnosis has done among else is push to the fronts all my fears of what is yet to come. Of aging and loneliness, of my parents dying, of personal and professional failure, of dying a desolate death with no family of my own, of war and guilt and shame and all those things that I had thought I’d somehow managed to rebuke since my teens and have now returned with a vengeance, in much worse form.
This morning I took a photo of my own eyes with the camera on the mobile phone that my father had rented for me to take on this trip back between blood tests. My eyes have never looked so fearful, with dark circles under them that I have never seen until the past weeks. They are just staring, not unlike the eyes of a captive hostage. They are the eyes of someone who doesn’t fall asleep and dreads waking up when she does, they are deep hollows of desperation.
I have been depressed, despaired and afraid many times, but never like this, and never without rebuke, without a chance to move away from my own fear into that of others, without yet a chance of compassion, though today in the park I saw an ashen withdrawn woman with a look on her face similar to my own, driving her wheelchair, and I thought first how much pain there is in the world and that my chances of finding a mate are still greater, and then that the HIV is of course no vaccination against any of that. Maybe pain is a substance, made of atoms, a stuff that is shared among communities and people, and it has somehow glued itself to me throughout my life, finally taking ultimate form in the shape of this virus.
I could still have both cancer and HIV, especially if I keep smoking like this and feeling like this on top of all my unhealthy, not to mention self destructive habits of the near and far past. I could still drive a car off the highway, and I could still experience all kinds of loss. But not the loss of what I never had that the HIV brings, looking at babies, couples, families, young people and not, as before, wishing I was them with a tinge of sorrow and self pity, but knowing I will never be them, never feel even the envy that comes with daring to hope to acquire what others have. If ever I did or appeared like I did, it was just a mirage, a fleeting shadow on the bleak undercurrents of my life.
Now I have to go shower in order to meet the one friend out of the three that I haven’t yet met. He is a German student in my institute, and close to my age. He refused to meet me in the room that I rent, so I will go out, perhaps look normal to a bystander (but I already know that people don’t really look, even in Israel where people openly stare and eavesdrop, let alone in the Netherlands where they live and let live to the max). And I will try to suppress my wild unsubstantiated hope that he will fall in love with me (he has a girlfriend anyway, a force that I have always been reluctant to fight, and I am sure my revealing my status to him over her mobile phone a few days before the new year did its bit to strengthen their relationship, the both of them clinging to each other in fear of what is out there, what can hit them, what I was stupid and blind enough to let enter me).
I am back. I met R. outside the café where we once sat and waited for Z. to return and describe the apartment he had obtained from his housing corporation after 4 years on the waiting list, the apartment where we were supposed to live together now. R. was nervous and chatty seeing me. He was a bit ill and I had to stay away at my side of the tables, he split pretty quickly too, I think 2 hours in the maximum people can take with me. I answered all his questions about the disease as straightforward as I could, and he seemed more perplexed by the minute. The atmosphere eased somewhat when we moved into a louder, darker place and talked about our studies. I was thinking of Z the whole time. His phone is disconnected. I tried calling him again on the way back.
I have aids. Nothing and no one can ever change that. It is a fact that is here to stay that I will not be able to get rid of. It is the scariest, most horrible thing that I could imagine and it has happened to me. Finally my destiny has caught up with me. 10 years ago I made an attempt at writing a short story which made my father come out red eyed from the bathroom, where he’d read it. It was the first and last complete story that I wrote and it was based on a dream. In the dream, I was a teenager again, and I had a boyfriend with aids. He was dying. I still remember how that story ended: “on his last night, I had sent the nurse away. There was nothing to do, the apartment had been cleaned. Because of the disease, there was not a lot that we could do. There was an animal of my species, I had found it but couldn’t get as close to it as I wanted”. Now I know how Z. feels, I just wish I was dying tonight like that guy in the story, the dream that had predicted so accurately what would happen 10 years later.
There are a lot of strange coincidences like that, in retrospect, or signs that an inner me knew what was going on somehow. Although I doubt I was infected at the time that I had the dream. There is a documentary photography book by Nan Goldin, “10 years later”, with this couple so much in love in beautiful coastal Italy, and doing heroin, and then later dying of aids. I loved that book and kept coming back to the university bookshop to browse through it, I even thought of buying it.
There is the eerie, creepy similarity between the time that I was infected and the time that I was so in love right before finding out, recklessly, hopelessly in love and trying to enjoy every minute like my friends encouraged me to, still very anxious, and having no idea the horror waiting around the corner, so I started to smoke again after a four year cessation. Or having some idea, somehow, because I listened to the same CD, the same song, titled it’s always now, trying to soothe my fears. I had tried to break out of the pattern again by symbolically driving to the psych ward were I was once hospitalized and smoking what I thought was a final cigarette there, the night before I was tested. I had tried to let go of the fear and I ended up with much more of it than I could even imagine, an endless supply of raw fear, regret, sorrow and grief. I had tried to give into love and happiness but I ended up with the most overwhelming punishment for it there ever was.
“All your relationships have been ruined”, said Dr. A when I told him. He was flabbergasted, paling visibly when I told him I had almost full blown aids. He had been treating me for years and never thought I was infected. Neither did the gynecologist, whom I saw for frequent but not too disturbing yeast infections, or the dentist, who commented often on my gingivitis, and that I should floss more, to which I truthfully replied that I always floss. Sure some hairdressers commented on the broken state of my hair and suggested I changed my diet, so I did, especially after my white blood cell count came back low and I was prescribed B12. But all these are things that everyone suffers from occasionally, or don’t they? Nothing was too chronic or severe. Even the mouth ulcers I got as a reaction to the last homeopathic dose, which raised my spirits considerably and allowed me to start a conversation with a beautiful stranger, Z., a couple of weeks later, disappeared after a while.
I am taking a tranquilizer now although I know that they are not prescribed and sooner or later they will stop working. I just can’t deal with this raw ache.
It is so cold and clear outside, I had just smoked another cigarette at the front door. People are going out in high heels and short skirts, skirting, or they are at home where warm lights glow. The Dutch are so good at that, creating a gezellig atmosphere, making you feel so left out even when you don’t have aids, when you don’t know, when you are just a pretty and still young looking early 30s woman, out of place and lonely but still hopeful, as I was lightyears ago, or 2 months ago, when I met Z. In my apartment, the new roommate, which I have not yet met, has come and gone, leaving a bag of oranges on the kitchen counter. Whoever she is, she has some social life here. I hope egotistically that she doesn’t have a boyfriend, but I will have to leave anyway if she does or if she doesn’t, and the amount of pain is so great that it will not make any difference whatsoever.
I am so scared. I want Z to come and take me in his arms and tell me things will be ok, even though I don’t believe that for a second. He has lost so much weight since it happened, he is still so worried that he contracted it despite the doctors’ reassurances and an early test that came back negative. I am so afraid that he has even though I heard them too, even though I read on line that people like me can and do have relationships, have sex, have babies even. But those are normal people with HIV not cases like me, not people doomed for loneliness from birth, with only fleeting illusions of warmth, of happiness, passing through their lives to torment them even further.
I want to die.
I could go on writing this till the end of the page, till the end of the computer’s memory. I want to die I want to die I want to die I want to die. I want it to all end. I wish I could end it. I can end it, but I don’t dare to. Not yet.
Z has told me of his prophetic dream in which, while still in the Pakistani refugee camps, he dreamed he was in Europe, trying to walk barefoot on rocky ground while the other people around him had shoes, wondering why he didn’t have any of his own. What about my aids dream 10 years ago. How could I have known that. 10 years later. There was an animal of my species, I had found it, but I couldn’t get as close to it as I had wanted. Still, I wrote then, I was thankful to God for having let me meet that animal. I was in the dream, I was in the story that I wrote under its impression, but I am not grateful now. Maybe that is what I am punished for, for being hollow.
I had a fitful night despite the tranquilizer. It was endless. My flatmate came in with her boyfriend. They seemed nice enough people, innocent enough. I was woken up by my friend Caroline asking if I want to join her and her three beautiful angelic kids for a day out on the seal sanctuary, somewhere I’d always wanted to go, so I said yes and am meeting them outside in 10 minutes. I always wanted to take Z there. I called him again but got his voicemail, which he doesn’t listen to.
As I write this Nitin Sawhney’s we are free to be free is playing, one of the most moving tunes I know and something which I’d listen to in my lonely trips and endless trains rides in Japan over and over again. It was also playing to nights ago when Z was here, unshaved, looking amanciated and even smelling not too good in his old clothes and a new gold chain, so foreign in its look, he’d been given by his sister. He has me in his arms on the black couch were we’d first made out seemingly ages ago. I was scared then and he was excited, I was so scared of being hurt. This time as that time, he was in control, he called the shots, the only difference was that previously I had been able to had I summed up my esteem and willpower, but something in me submits to a man I love immediately, like a dog rolling over. He was stroking and hugging me this time, speaking softly and groping my breasts over my pajama, making me moan with emotion and fear because I knew he was doing it as a goodbye gift. He would not open his mouth to kisses and he told me gently again that we are breaking up. Then he got up and left, there was nothing I could do. I was furious with my body for being so aroused and I despertaly masturbated that night, couldn’t come for all the awful images and voices in my head, and then twice before I got up, not because I wanted to and not because I enjoyed it, because I was so helpless in his arms and I love him so much, all of him.
Z was here, me begging for closeness, he trying to masturbate over my exposed breasts and retreating, me begging for 5 minutes of a hug together, then frantically tying to explain. But it didn’t start like this, it started good with us talking and him finally listening to information about the virus, then we went to a bar. We were cordial and when I folded my arm in his he was stiff, but he begun to kiss me and rub against me in the hallways before leaving after smoking that last cigarette, which led to all that. Then I tried to call him dozens of times of course until his mobile was disconnected. Now I try to use unconditional self acceptance like Tanja taught me, except it’s so hard.
Letter to Z
Again I am fully awake and I need sleep so badly, but I try to tell myself there is nothing urgent I need to do tomorrow except see my behavioral therapist Tanja. I have some hope she can make something out of this, but can she, isn’t that huge on her? I had one of these encouraging bombastic talks with my brother and read his wife’s email and also worked out, all things which empowered me to meet Z again and not feel as weak as I did before and talk about a lot of stuff.
Don’t feel bad about what happened. Well, I feel bad and I am sure you do (you said, don’t look at me that way so many times, and it is so hard not to go smoke another awful lonely cigarette in the cold). I meant what I said about both of us being shocked. It is the first time for me to beg a man like this and knowing that even if I went to the toilet everything would change, he would run off. We didn’t know what to do with each other.
You know, when we talked in the bar it is like you don’t feel sympathy for me at all, you don’t understand what this disease is to a 32 year old woman. Groningen was hard enough as is. And you, I want to tell you you can still be an IAO, I can help you with your English, and you should really invest in that second internship. I worked so much last year, it is uncomparable to this one. And remember one thing, well you know that officially you are 26 years old so don’t compare yourself to a 26 year old Dutch guy. Look, now you don’t have to worry about where to live for a while (although you might have to buy another heater). And look, we could make each other stronger, not just as lovers, but also as friends.
If you are thinking that I am clinging to you like this because I am afraid that in my condition no other man will want me, especially in this town where I feel so remote and removed anyway, and also I am scared of men, have always been, you are right. Isn’t it ironic that the thing that most scares me is what damaged me and yet I am not willing to give that up because it’s a wonderful thing, sex I mean, but not just sex everything around it. So yes, I am scared of being alone, but I also have real emotion for you.
This is so un-innocent, and this is what I mean among else when I say that this disease is robbing me of my innocence. And right now I am not such a fun person, I can feel it. But does one always have to be gezellig & leuk, isn’t that my complaint about the Dutch, my fear of them even? I don’t want crying and screaming and stress all the time either, just mutual understanding. I have my traumas, you have yours. It is pointless to compare them because they are on different levels. Maybe two minuses can’t make a plus (no pun intended). Maybe they can. Maybe we can look beautiful and young and happy on the outside and fool everybody. I will help you with your studies, you will get somewhere I am sure. Why not? I have had some crazy fantasies about you making an internship in my country, I am sure my dad could help with that, and I am sure you would love it even though it would be challenging. Sure I have not had any long relationships either, I told you we are animals of the same species. They were longer than yours yes but not at all long for a woman my age, and comparing myself to women my age at home even without the current health problem would be a huge cause for depression, but fuck it, we did not all start in the same place and we will not all finish in the same place, and we are free to live our lives. I feel like there are so many issues between us that we should overcome, because of my condition and even before because of about to move in together, everything is so serious, and I was actually moving in with someone I didn’t know that well. Tonight for the first time I didn’t like you, didn’t like the tone of voice you used with me. But it is natural isn’t it, to see all sides, not just blind love.
I don’t want to write big words anymore. I am tired of them and so tired of myself and so tired yet again even after masturbating, just that I am not ready to let go, for a lot of reasons. Call it a friendship or a boyfriend, does it matter in the end, I am not ready to let go. I am learning more things about you, appreciating you and also hating you a little, but still hanging in there, curious, empathic, and hoping we can make it work.
I am terrified about infecting you or anybody, so let’s make clear lines about what we do and stick to them. Sure it’s a regression but my condition demands it, unless you want to fuck someone else or prefer an all or nothing, that would be humiliating to me, this disease is devastating to my esteem as a woman, but is that all your responsibility? Don’t think so, so just be a friend. Friends fuck up also, so let’s forget tonight. I am not sure whose fault it was, you called it a mistake but anything that brings the truth to light isn’t one, ultimately. You started it but I did things like the begging and pleading that I never thought I’d do, and now I am so bloody restless again and you won’t answer the phone. Not that I try at this hour after 1 am, shit. I hope you have a good day tomorrow, I will come by your place and show you this. I still want you to feel good about yourself, I hate even thinking that you feel guilty, I don’t know why I guess I really empathize with you, you are my species, but the same species can also hurt each other. I am afraid you will think I am crazy, because of the intensity of the situation of the disease you see things that you would not have seen, hidden things I had hidden from myself for I am discovering both good and bad things every day. Ashamed of them. But not willing to martyr myself and stick to some superficial code of womanly conduct either. Anyway maybe this is what it is all about, who knows.
Our conversation in the bar was very serious, it centered on all the things we need, all the things each of us feels deprived of in this life and wants to get and fears of not getting. It is like each of us is screaming that s/he is in worse shape, was hurt more, suffered more. But you know what I believe we can get them. This disease is making me grow up very fast I think. I am a hopeless optimistic even when sometimes I fall into the pit of despair. And why I want to cheer you up so much I don’t know, you just left me standing naked and begging for you. I know it shouldn’t be like that between a man and a woman, but I also know right now I don’t care how it should be, I care for what it real, what is happening. Discovering the disease peels away so many protective layers of pseudo reality from my life, or maybe I am just going crazy.
Woke up before six thinking not of the disease but afraid for losing Z even though sent him a friendly text last night after writing here, something like You were right I am tired sweet dreams was nice to meet. Was thinking of going out there trying to locate his apartment (where he was not answering his phone, he only answers at his convenience now), and telling him that I am sorry, we should just be friends etc. then thinking that if my fear of abandonment is that great that when I am at my weakest and need support the most I let someone treat me like that, let alone a man who was supposed to love me, according to his own version, just one day before it all happens, and he is failing to come through, or if the social isolation of this place really gets me that bad, then I should get treatment/leave it.
I have always been so insecure about wanting me even when I looked my best and was giving reasons why they wouldn’t want to be with me. The men that I wanted I was always obsessed with, like J., I was yearning throughout the whole relation and felt that it started because I insisted so badly – it is a pattern which recurred with his current girlfriend, whose fury I am scared of when I let him know I am infected upon coming back. Either that or I accepted people I didn’t want who were obsessed with me, but became obsessed with them in a timely manner, and I have never left anybody; well I did leave one complete junkie and another guy who scared the crap out of me one night when I was on E, but that was in the nightmare of adolescence, then I left all over the place (leaving after a 26 year old had sex with me for the first time when I was 15, and before him leaving a man I lived with, a 30 something year old). Somewhere along the line though with developing my life and starting to date normal guys (my Thai boyfriend is an exception, I never officially left him and continued to write loving emails, the only one attempt on the phone from my brother’s resulting in a fit of crying and an overwhelming sense of grief), I lost any ability to leave (well I am still in love with Z and I was head over heels before, but I would not be in this single situation if I had not wasted time with people I shouldn’t have been that long with, and then again like I wrote him I didn’t spend that long with these people, and withdrew when I wasn’t with them, believing that I am “guilty” of collecting too many lovers when I was young and more openly self destructive and didn’t enjoy sex. The irony is that I feel so guilty with the HIV, like it is the promiscuous woman’s disease, and I am ashamed to be pointed at as though someone is keeping an active log of my sexual encounters, something that comes with living in Israeli society I suppose. Anyhow Z had said last night that he had only 2 short relationships before me, each a month long. Had I known that earlier maybe that would have been a warning sign, in a “normal” guy, I mean a Western guy, it would be and I would warn myself that he may not be able to commit, but we both fell in so deep and I did not think for the first time, another bitter, terrible irony – for the first time ever did not give myself reasons not to do it, went ahead with it despite the terrible abandonment fear than now I know led to the chainsmoking even before I was diagnosed – and anyway all guy are single and unable to attach until they do, though some are serial attachers, moving from woman to woman, and some are unable to leave and like to keep the previous hanging on. Or need rather, for we are talking about an overwhelming need here, and I am also a need to walk in the absolute freezing cold out to Z’s apartment on the edge of the town and tell him – what? That we should stay friends, that I have never left anybody, that I need all the friends I can get in my situation, that my esteem is low but not as low as to let myself get treated like this when I came to see him after he dumped me in response to a disease and is now trying to be nice about it (I had asked him when he first grabbed me last night if he was doing it so I would feel good about myself, something in the nature of he had said the last time), that what…. There is so much to tell, especially when one starts to tell the truth and discover the truth it is an endless pit, a mine to dig from, and men don’t want that, men want porn and good food and fast pretty safe clean girls, but I can’t stop this truth from overflowing, from spilling out of the mine, whether it is in demand or not, right now the stocks are very low for it.
I doubt my behavioral therapist will be able to do much about that. Yet I make it sound so final, just like Z when he says he is like this and like that and, in his own words, he will always be scared and it is too late to change (passing scary thought in the general panic I feel, he had said he will always be scared to have sex with me, and then when I was begging I said it is OK to be scared, a few times, perhaps an additional turn off, making him come to his senses. I had promised no body fluids last night, we didn’t even French kiss although our mouths were slightly more open and free than the last time, when they were dry and pursed and scratchy, both of them, although he wanted that unsafe business – how unsafe I am not sure but perhaps not far from oral sex – of having his anus licked and I refused instinctively on complete other grounds)
The only strategy I have, but this is out of a self help book and I doubt it applies to such an extreme condition, is to confuse him by behaving in a manner which he doesn’t expect, by not repeating the pattern that was there since I initiated our relationship, although it was definitely mutual, but my insecurity made me initiate a lot more, and not chasing him, begging him, and in an extreme sense refusing to see him or even breaking off with him, after all he had broken off with me and didn’t want to see me here at all this week, you don’t do that to a person you like.
I feel so dry, fatigued, wrinkled and unattractive now, without even taking the horrible endless fundamental HIV fact into consideration. As Hugh Grant would put it is a movie that like all romantic comedies was more science fiction to me always than anything set out in outer space, bugger, bugger, bugger.
He is unable to leave but he has left, has reminded me again that “we” have broken up and I said twice that I do not think of him as my boyfriend, to reassure him. But I do not want to have sex and intimacy with someone who isn’t willing to be called my boyfriend, until I was diagnosed I wouldn’t consider that because I knew it would lead to terrible heartache, and now I was beyond that heartache, or maybe the void of feeling completely abandoned and unattractive is worse. And the only thing I could do when my nonstop ringing was met with a disconnected mobile, the only strategy I could think of was this sweet dreams thing, playing it cool, hiding my hurt (but I wasn’t that hurt, just tired, I was quite open eyed meeting him in the bar last night and imagined him too, just too humans, I wish it could stay that way although I miss the blind infatuation but only when it was mirrored back at me). Sick or not that much hasn’t changed. Yet. So it is goodbye then like he has always told me, or just ignoring it like I was with J, that was my tactic to finally seize him (but he had never wanted me completely, and my insecurity enhanced that, although the same as far as I know went on with my predecessor). The idea that you have to trap the one you love, but if you don’t trap and you still love, you are putting yourself out there so vulnerable.
Anything that I do now, going out there and saying that I will not be treated that way and let’s just be friends, repeating his own words to me just giving them my personal and less panic-inducing form, would be a desperate way of keeping some hold on him or a risk that might result in losing him, in admitting that I lost for HIV, not for another woman or whatever, any action that I take would not reduce the pain even though I am here to take action. My coming here was an action, a statement. And as much as I feel miserable in this room with its single mattress on the floor screaming my single, immature, barren status, I feel even worse in my parents’ house despite the huge love I feel for them.
Walking out there (because he won’t answer the phone) and doing anything at this hour when I am so tired, when he knows I am so tired, when I should be sound asleep, is just another statement saying I love you, don’t leave me, even if I have to leave you to keep my self image intact. Maybe I have to give in to some flawed human-ness now and not do it. I have an excuse after all, I am sick.
And he even said he would read about the disease and safe sex, I had to ruin it by grabbing and insisting so vehemently (although that he had said also out of pressure and as a way out) instead of pulling away strategically, or saying that we are not ready (we are not, we and he should be more informed because it is scary even with the knowledge, but I should be secure in knowing that he wants me in planning any sort of sexual activity with him when my viral load goes down, and he is not giving me that, so asides from a great horniness and some kind of dogged loyalty and fear of being along, why should I want intimacy with him? I guess I want the little that I can get. I guess I am desperate. Hence my nice text to him. Might confuse him for a second and shake off or trigger some guilt, but that’s it. It won’t ward off the abandonment, won’t relief me of the pain.
Bugger, bugger, bugger.
Its all about esteem isn’t it, he sees himself as someone who is deprived of this and that as an immigrant, I see him as “rich”, like my beautiful spirited mum said before this nightmare began, but I don’t see myself as deserving better treatment, and I see myself as forever less because somehow near my peers, near men, I have the scars and tattoos and I am getting older and re-developing nasty unattractive habits like smoking, and now I have HIV. Who would want to be around that? I would never pick up Z knowing I have it, and my battle to keep him is also a battle to keep my own esteem, in the same way that his battle to lose me is for his esteem, the first thing he wrote was that in his culture it is a biggest taboo if he got it. He is more afraid of catching it and having society know than catching it, yet tells me off for being scared of the future, saying I am this and that.
Shortly after 9.00
Something so awful happened now that I can’t even bring myself to write about it. I waited for Z at his job, I stalked him at the entrance to his building and when he finally came I gave him the Afghan book that he kept forgetting to borrow from me and I asked him not to pretend that something bad didn’t happen to me, because I wouldn’t let anyone treat me like this if it didn’t. Then he chased after me. I have always wanted a man to do that and he did, I looked around at the stoplight and saw him running towards me, but he gave me back the book, said he doesn’t think he would read it, and asked me not to call him again, told me I call him so often. I tried to tell him I called him to tell him it was OK but he said that it was too difficult, and he said, for the first time ever, sorry, and just left me standing there. His face was so withdrawn he didn’t even look in my eye. I want so much to make things OK, a little better. I could go to his apartment tonight but I am terrified of his reaction, he doesn’t want anything to do with me, and I love him so much, why I don’t know, and I lost him, and who else would I get in this town? I am so alone now and all I can do is repeat Oh God to myself, I can’t even cry. He doesn’t love me, he dumped me right upon finding out. I am so scared of what I have become, the Human In immune efficiency Virus, that is what I have become and nothing else. Why did I go there, why couldn’t I have waited it out till he calmed down, is it because I had a surge of false energy and confidence that comes before I get my period, I am so scared now, I feel so crazy and lonely. Why did I have to stand on those steps in the cold, and yet I was so happy to see him, I still love this man, still empathize with him, understand why he is throwing me away, that is the worse thing, I understand that. I am so frightened, God help me I am so frightened and alone and I don’t know if anything or anyone can reach me in this darkness, all those normal people going about their lives, he going about his life and not wanting me to disturb it, what have I become, a nothing. His phone disconnected, I try to call and beg him to help me just this week, after that I will leave this town and leave him alone for good, go somewhere I don’t know, I am so frightened, I have so few friends, oh my heart, my body, my pride, my fear. Oh my God I am bleeding in so many ways.
I feel it coming, my period, always destroying things for me, my lack of patience, maturity, understanding. My need need need even before I was informed of my virus. I am bleeding, bleeding from the place where all the troubles begun. He will never calm down, never want to speak to me. Oh God what have I done. All or nothing. He could have been a friend.
Forgive me Z, forgive me for being so frightened and so alone, for putting you under so much pressure, for losing all my confidence, for acting crazy, for stalking you, for maybe scaring you. It is because I am so scared myself. I am scared no one will ever want me, because you wanted me so much and turned around. I am scared of the amount of loneliness and isolation that I can feel. I do not need anything from you anymore in this life or from anyone, this is the start of a new life for me, a life without need because I know my needs, sexual or emotional or social, cannot be fulfilled. Forgive me for coming here, I should have never come here, and for not listening to you, and for hoping that you would change your mind. Forgive me for loving you as you are. Forgive me for trying to stand up a little to myself and self respect. Forgive me for feeling and acting like a dead person, like I have nothing to lose. You haven’t changed but I have.
It was an awful day, and the only semi-good thing about it was that I talked to my promoter, told him I am sick and would have to keep flying back and forth, and I saw the worry and concern in his eyes, but for the time being, him and my supervisor will lay off me. I did not tell him what I have. I had a meeting with my advisor Tanja too, whom I see tomorrow. She became a kind of therapist to me, this is a woman who started off coaching me for public presentation, but actually we never got round to that. She teaches what she calls Unconditional Self Acceptance, although we weren’t doing any of that today as she was terribly sorry for me. It is thanks to her that I met Z actually, although I now deeply regret that.
I try to avoid flashes of last night and this morning before my eyes, although it’s very hard. I wrote him a final letter, and I went over in the bitter biting cold and near darkness to the edge of the town where he lives, where we were supposed to happily and cozily and sexually live (oh God, will that ever happen, with anyone, it seems so unattainable, millions of light years away), but I could not locate the apartment, and I called him but he did not reply and then disconnected the phone. So I walked back, and every person on their bike looked like him as they inevitably do, bundled up. And I called Caroline and asked her to deliver my letter, and I also went to the internet shop again and emailed it to him. So I will copy it from the sent file into this file one day, right now I am too devastated to do so.
Oh God, what have you taken from me? I ended up being unable to move from the internet shop, I had no new emails, and I just googled the hardest time of my life, all sorts of bad times popped up, none of which I am immune against of course, pardon the pun, and one which was HIV, written by a woman. But she had a supporting partner, how do people get one I wonder, I mean she had him before. I am obviously really really crap and choosing my mates.
I look very run down and sick with my period now on top of everything and the sleeplessness of the last days, and all the smoking doesn’t help either. It has always been a huge problem for me, my premenstrual tension, and I have tried over the years to tame it by taking homeopathic medicine, but that gets destroyed both by antibiotics and the coffee that I started drinking. I wish I could have held off meeting Z until tonight, although I look much crappier now. My mood is always its worst and most unstable the day before. I don’t know what difference it would have made, probably none since he was so set on breaking up with me, but at least I would have felt better about my own conduct. Drinking a beer the night before was no good. I read somewhere that PMS is especially hard in HIV women, great, another bonus along with muscle atrophy and uterus tumors that come along with the drugs. It’s better not to know about these side effects I think, although it is good to know when my period is so at least I can predict going crazy, so for the record today is the 16.1.
I feel like a balloon that’s been emptied of all energy and vitality and life force, although I do not yet feel the deep hollow depression that comes with the sunken look when the bleeding itself is over. I lost so much weight that the bloating was not serious this time, also because I changed my diet drastically and hardly take any wheat or sugar, I suppose, or just because I smoke too much to eat.
I took a tranquilizer again, and I will take the cocktail soon, because I ate and the antibiotic should be taken on an empty stomach. Actually I will take the HIV pills now and the antibiotic later, will put it on my bed to remind me, since it is already 12 hours, 12 hours since I totally fucked up by stalking Z at his workplace, because I swallowed the pills on my frantic walk there.
I slept well in I don’t know how long, woke up after 11, and feel like I could go on sleeping. My period feels steady and heavy.
It is amazing, the relief that the bleeding beings with it. Not that I feel great now in any respect, but it is such a shift from the ferentic anxiety. I see now how I would have acted differently on another day with Z (and then, he wouldn’t have tried anything will I was having my period). His phone is still disconnected. He really hates me, oh God.
Our life could have been so simple. In essence there was no reason it should have been better than before, what we’d planned. Even our lovemaking wouldn’t have changed. He doesn’t like to go down on a woman and I could have still gone down on him, as the risk is on the giver. Even if he changed his mind about giving oral sex (he isn’t the type to), it would not have been dangerous, just licking my clit, and worse case scenario would be doing it through a cut condom. Most of all though, we were both cats purring at the slightest touch, he loved being touched more than any man I knew. This kind of thinking makes me a. despaired and lonely and yearning for sex with him; b) feel that I would be hopelessly embarrassed to explain what I can and cannot do in this desolate city if anyone ever comes along that might consider me. Last night with my wholesome Italian flatmate, while she was cooking her pasta and I was popping out for lungfuls of poison, we discussed the single male situation here, as she is working at a chemical company and has met her boyfriend while working in Eindhoven for 2 years, and I think she is around me age. Chances are slim, as I knew before, even without fucking hiv. Still this morning, and that has to do with the period, I woke up for once not so terribly despaired. Tanja and I had discussed that I should try dating and meeting people even if I reckon nothing’ll come out of it, so I will email the only other guy I dated here, A., a 42 year old university teacher that I rejected on ground of his being a divorced father of two and also a father of an illegitimate child whose mother is raising him with her husband and other kids. He is a nice guy though, and I saw him again briefly when I begun to be with Z. once again I have ancient wisdom shoved in my face: judge not lest ye be judged.
I’d also like to go to the gym again even though my top half still feels cramped from using a few new weight machines the other day. It was reading of the muscle atrophy, or is it something worse, anyway the muscles becoming really thin and wasted, that send me there.
Gotta hold off the smokes, but I am so heavily hooked now. Would a few more days add? I will try Zyban again when I get home, and call Y and ask him out, just as a friend, not thinking a single step further, because that will drive me insaner than I am.
The cigarettes are such raw poison, especially these Marlboro Lights. But after I smoke one I immediately want another. With my period also going on, I look so frail and feel like I could sleep throughout the whole day, but I also want to work out, need to go back to the office in the evening and make photocopies of articles for my report, that I do want to hand in, especially as I am being paid, and check emails. I meet Tanja at 16 and finish at 17, so I suppose I could go to the gym then and come to the office later. That might be better. Try to remember when I took the drugs this morning, possible 9 so I should be able to take them at 10 when the office shuts down. Then blissful sleep, and tomorrow meet Caroline near Z’s building so she can deliver my heartbreaking letter to him. I want to ask her to tell him I’ll be waiting in the cantine for him, the place where we’d met, but I doubt he will. He has put up a huge wall. Maybe he is right. Maybe it is better for the both of us. Maybe I am not strong enough to be his friend. He, or rather I, is turning this disease from a physical into a mental condition.
Well I lied. I did not write here every day, in fact I did not write for more than 2 months, nor did I kill myself. But I did write every day: emails, frantic jotted entries in my messy journal which also harbors feverish ideas I have for my dissertation or short stories, in the middle of the night, or sometimes on notes that remain scattered or as bookmarks, which I promise myself to enter somewhere and never throw away, but I will soon, b/c I am moving.
To cut right to the chase, I has a fight with E, although he might not perceive of it that way an neither did I at the time, I thought I was just venting and letting out anger, but I know that it was with him or rather with the guy that infected me which could have been have, b/c he is a lying cheating chicken shit.
I will continue it here:
You lied to a woman you met on the internet by not telling her you had HIV. OK fair enough that you did not infect her. You lied on an anonymous medical study that takes hours, which is supposed to relate moods to health, by not saying you have HIV, by forgetting that one little unimportant detail. You are a coward. You lie to your mother, friends, and brothers, by not saying it and pretending that your other brother is the black sheep. You lie every time with your cheerfulness and robustness and loud voice and unnecessary laughter about things which are not funny. I know it is your strategy to get on in this world.
I have had unprotected sex with five men in the last 10 years. Here is my sexual history: 8 years ago I was tested, after 2 years of celibacy. Then I had sex with this guy who asked me to switch to another contraceptive called the sponge, which is a kind of one-time diaphragm prescribed by a gynecologist. With this used, it took two weeks for me to get pregnant and for the guy to break up with me, but make sure I have an abortion. Then I had sex for 6 months with his cousin, who was a virgin. He was really a virgin, trust me on that, and only 19 years old to my 24. Then I had sex for 2 years with my bisexual boyfriend. Then for one year with my cheating last boyfriend. Then in Japan, three years ago, I had sex two or three times with a Japanese man, before we thought it was crazy and started to use condoms. With my two long term boyfriends, the only serious relationships I’ve had, we used condoms almost all the time because I was not on the birth control pill and after being pregnant I was not going to take chances. The only times we would have unprotected sex were when I was menstruating. But I did not like to have sex during my period so much, so it was not that many times. The doctors say that no way could I have been infected in Japan: it is way too close to now for my immune system to be in this shape, that guy had sex only with three other women and HIV is extremely low in Japan.
I have had 3 relationships and I am 32 years old: 1 lasted 6 months, that was the virgin boy I used to get over his bastard cousin; 1 was the bisexual guy. I cheated on him twice, once with a South African and once with an American, but of course we always used condoms; then with my cheating ex with whom I lived and was supposed to marry. When he cheated on me I took off, met my Thai boyfriend with whom I was extremely cautious. Besides him I have had sex with that Japanese guy, another Japanese guy and a Thai-Japanese-American guy, all protected. In between the bisexual guy and my cheating ex, I had sex with two or three Israeli and one Belgian guy, all protected.
So I could have contracted HIV from the guy who got me pregnant, who is a bastard and whom I hate; from my bisexual ex; and there is a smaller chance, because of the time lapse, that it may have also been from the cheating boyfriend, although he had not many girlfriends before me. His last was a virgin when they started, but towards the end of their period together she was cheating on him.
The odds of my getting HIV are outrageously low. The odds of you getting it were high. You were having unprotected anal sex in which you were entered by strangers. At the same time you had the audacity to enjoy a normal life, to carry on real long term relationships with women, first your wife and then your girlfriend, making a cozy home together and looking down at the black sheep of society, at my brother, at me.
I got HIV because of lies. Whoever gave it to me may not have lied about his status, but he has lied about himself and what he is, lied about his lifestyle. He was a liar like you.
I have no choice but to use the truth to redeem myself, I cannot afford to inhale the pain and take in the blame like I did last night, chainsmoking in your living room and apologizing for my emotions. I have to eat organic, take supplements, exercise and get all the love and compassion from real people that I can. I missed out on so many things in life. I did not have a long term relationship, and with the cancers waiting around the corner that not even the drugs can stop, who knows if I will ever have children even if I find a man willing to have them with me, the chance of which is not likely. The man who loved me left me because of HIV; the woman you were with left you not because of that but before that, I imagine because of your false cheating lying pseudo-cheerful ways.
I have never been close to anyone, and my pattern in life was either short failed relationships, or periods of isolation and celibacy. It is not that I am at 32 without a family and a chance of having one. It is that I am a million miles away from it, my whole disposition towards men is fear and distrust, and instead of being able to trust them, I got a gift from someone like you who will make them run away from me even if I trust them and they like me. I lost the ability to be a woman, even before I get the breast cancer, uterus cancer and facial disfigurement that the doctors promise me.
4 months later….. (23.5)
We are not our degree, we are not our job, is what I woke up regretting not having told W when I met her in the hall. W is a secretary at my work, and not long ago she underwent some general collapse and ended up taking leave due to a “burn out”. Now she was back and thanking me for having sent her a thank you card when she was away. I had sent it in one of the hard days, and today has been an easy day, so easy I feel I am floating on sugar fluff, waking up with my body, although not satisfied because of the peripheral effects of Stokrin and my own fears, tingling everywhere it was sucked and teased and kissed and loved, much much more than a healthy body. But is that why I am so optimistic? I wrote W when P hadn’t so much as touched me yet. I guess it is all about acceptance, not just of the bad things, the imperfections, the unattainability of it all, but also the good things, the fact that people do care, that people do do what they can as much as they can, the fact that there are no gurus and heroes and witches but there are people all around us and all we have to do is reach out to them, and we will never be alone if we do that… whenever I used to approach W, & I used to do that a lot with every little thing, she would always frown and get stressed and sometimes act really sarcastic, so much so that I would avoid approaching her and spend time with my roommate complaining about her, which further tied me to the distracting roommate, about which I would complain to others vehemenantly in turn. But when she took leave on the basis of stress I realized two things: first that it had nothing to do wit me personally and there was nothing to get anxious about; the second that we are all doing out best, stressing ourselves to the max, even those of us who aren’t perfectionists, even those who seem slackers (the way I am now), are doing the maximum they can to cope with the uncertainty and mystery of love. I was going to write life but I will leave this Freudian slip… I fill (yet another slip) loved up, I feel, and allow me to leave the topic of acceptance for a moment, like rays of sunshine could be shining through my bellybutton.
And now I am going to close this, brush my teeth and go to the gym to give myself some tough loving….
There are several possible answers to this. Currently my favorite is: because you can take it.
Some people, like my homeopath, would say: because this is your karma.
Lynn would say: because this is the only way to find God.
My former-best girlfriend (until she got married, but still a good friend, OK a friend. Ok some people are good friends for a certain time, and then they disappear, and then they come through again, not in the way you might want, but still giving you what you need). Well, she would say: because this was your only way to find love.
Have I found love? Today I had no text message, no call, so I’m afraid to even think so. My stomach is tied in a knot. Hell, I spend the evening in the gym despite my aching broken black and blue arm, and then upon reading my supervisor’s email, I sat down for a whole hour in the stifling heat of my living room to rephrase, completely, the abstract I’m submitting for the talk that I’m going to give. Yikes.
Biggest fear: to lose my eyesight. No, to lose my sanity. My cognitive ability. Become disoriented. AIDS related dementia. Does that happen to 20% of HIVers or 20% of the AIDS patients, I’m too scared to even check. To lose my face to lipoatrophy. Gosh even the Word speller doesn’t recognize this word. Well it bloody well exists in this world! I wish so much it didn’t. A buffalo hump. To be paralyzed like that poor man in Rotterdam.
All of the above.
Biggest, biggest fear. To be alone as a result of that, or regardless of that. To be alone, unloved, period.
Losing loved ones, also a huge, huge fear.
Not having children. Or losing the one I will have (I daren’t in my wildest dreams hope for more than one).
Am I poisoning myself with negative thoughts, or is this a legitimate outlet. I’M SO SCARED.
But god isn’t found just once. God has to be found and re-found. It’s so easy to lose track of him. Of this power inside me that enables me to carry on, to drag my sorry ass.
I love you, yes you. You will the full belly (not you! Although of course I love you too very much, I mean me).
You with the virus. You who was so sick and came back, you with the dry skin on the wings of your nose. You who saw black flakes fall in front of your eyes and wondered what it would be like to be blind and when will it happen. You who is still so mind-numbingly afraid sometimes, more often than not, in spurts.
You who informed. You who sent drugs in express mail to help some poor sod without insurance. You who doesn’t inform personally and leaves off the guy who will think you a whore. You who doesn’t want to hurt. You who hurt. You who shierks responsibility. You who confesses, discloses, you who hides.
You who is capable. You who is adult. You who is childish and needy and immature as a screaming baby. You who is cold, you who is empathic. You who is selfish. You who wants to show off. You who knows better. You who is apathetic and run down. You who dresses up. You who gained weight. You who lost weight and built muscle. You who broke your arm. You who prays to God and cries. You who never cries. The insomniac, the chronically fatigued. The streetwise wise-ass with the big mouth, tattoed you, scarred, bullied you. Bullied turned bully you. Savior you. Helper you. Resourceful you. Self destructive you. Bullimic you. Out of control you. Chainsmoking you. Pilll popping you. Then vitamin and anti-oxidant consumer you. Happy you. Sad you. Fearful you. Aging you. Child you once was. Mother you might never be. Wife you daren’t even hope to be. All of You.