Those were the words spoken to me at 7am Wednesday morning, November fifth, 2008, by a Muslim lad in Liverpool who sold me two British newspapers. He saw that I'd been crying and he asked me if I was ok. I grinned and pointed to the front-page photos of President-elect Obama. That's all I had to do. He grinned back at me - by now he had tears in his eyes too - and said, "He's given us all hope." Amen, brother. Allāhu Akbar. Amen.
But I'm getting a little ahead of myself.
What a difference a year makes, eh? This time last year, I was reeling from the betrayal of my long-term sero-different partner (to borrow a phrase from my esteemed colleague, Matt the Newt) on the eve of my 45th birthday.
This year, Foxtrot Charlie (keep up!) and I both had hiv clinic appointments in Liverpool on my birthday. It also happened to be Election Day in the US. (The last time my birthday and election day coincided, I got Ronald Regan for my 18th. ~shudder~) We travel from the Rock to Liverpool for our appointments, so we decided to use the clinic/birthday/election day coincidence as an excuse have a 36 hour break and booked a hotel room in Liverpool City Centre.
We attended our appointments, thankfully with no nasty surprises for either of us. The Fox collected his meds and we were on our way. We did some shopping and dumped our bags at the hotel as soon as the three pm check-in was available. After a short nap and a freshen up, we went out to sample some of Liverpool's pubs and eateries. We laughed at the local wildlife, did some crosswords (we're both cryptic fanatics), and had kebabs on our way back to the hotel.
First thing I did on arrival was turn on the telly - I knew the early results would be coming through. To my utter dismay, McFailin was in the lead. Arrrgghh!!! By the time we were both ready for bed, Obama had pulled into the lead - but only just. We were too tired to watch anymore (we'd both been up for close to twenty hours at this point) so we switched the telly off and went to sleep.
I awoke at 6:30am. Immediately, I wanted to know where the election was at. I daren't turn the telly on - Charlie has fatigue issues and needs his sleep - and I wanted a ciggy in a non-smoking building so the only thing for it was to get dressed and go downstairs.
I exited the elevator and was immediately drawn to the flat-screen in reception. I thought I was alone, but a voice behind me announced, "Obama won in a landslide!" I could have kissed the man!
I went outside, lit a ciggy, and started walking. Now, you've got to understand a bit of Liverpool history here. The place was built on money from the slave trade during the Victorian era. I was surrounded with beautiful buildings built on the backs of men and women just like Barack and Michelle Obama. And on this glorious morning, two people, one who was most certainly descended from slaves (Michelle), were the President and First-Lady elect of the most powerful nation in the world.
How far we have come.
I sat down on a bench in St John's Garden behind St George's Hall and cried happy tears. I can't find the words to adequately describe my feelings. Here I was, in a city far away from the land of my birth, a place inextricably intertwined with the darkest days of my homeland's history, celebrating the election of Barack Obama. Unbefuckinglievable.
It's one of those moments that will live with me forever, like the day the death of John Lennon was announced, like the day my daughter was born, like the day I was diagnosed with hiv, like the day I got back together with Charlie. All powerful emotional landmarks, all turning points in their own ways.
Is this finally the dawning of the Age of Aquarius that we've all been promised? I certainly hope so.
Please, let this be the dawn of acceptance and understanding and the end of hate for the sake of hate. Please, let this be the dawn of the day when there's no room for the Palins of this world.
It feels so good to be proud of America again.
That's what McCain/Palin would have you believe children in Illinois are doing these days in kindergarten, and they're blaming Obama. But in a way, that's how they do it in the Netherlands and the Netherlands has the third lowest teenage pregnancy rate in the world.
I say "...in a way..." because Dutch kindergarten children embark on a learning process, beginning with the basic building blocks of sex - relationships. They're not learning about sexually transmitted infections, for heaven's sake, not at that age. They learn about families both traditional and non-traditional. They explore how relationships might differ as well as looking at traits healthy relationships share. They compare and contrast their feelings for their parents, their siblings and their schoolmates. They learn about respect for their own bodies as well as the bodies of others. They learn about setting, enforcing and respecting boundaries.
As they move through their school career, the basic building blocks are built upon each year with age appropriate lessons. By the time they are in their mid-teens, they know how to use condoms and importantly, how to negotiate the use of condoms - a topic sorely lacking in most sex ed classes today.
And let me repeat: The Netherlands has the third lowest teenage pregnancy rate in the world, with only five teen pregnancies out of every 1000 girls.
Meanwhile, soon-to-be grandmother and Abstinence Only proponent Sarah Palin is the Republican candidate for Vice-President of the USA - the country that tops the global list with over 50 teenage girls out of every 1000 falling pregnant each year.
Hmm. The figures speak for themselves. The Netherlands, home of comprehensive sex/relationship education, from kindergarten on up, has the third lowest teen pregnancy rate in the world. The USA, home of Abstinence Only, has the highest teen pregnancy rate in the world. The Dutch; 5/1000. The Americans; 50/1000
Wake up - and grow up - America. It's high time you stopped equating sex with smut and put it back in its proper context as part of being human.
"No kidding!" I hear you say. Ah, but last night I did something I've never done before. I had me some Sustiva.
Over the past two weekends since I last wrote, Foxtrot Charlie and I have done a lot more talking. Stuff we haven't really touched on much in the past, stuff of honesty and insight. Long forgotten laughter tempered by well hidden tears. Stuff of comfortable silences and cuddles on the couch. Pleasure and pain and understanding.
And Sustiva. We've talked about Sustiva a fair bit over the past few months, but last night was different somehow; a subtle change in tempo, a whisper of altered nuance. Charlie always takes his Sustiva at bedtime and I found myself going round to his side of the bed to sit next to him as he dug a capsule out of the bottle. I held out my hand. "Give us one then."
His eyebrows shot up. "Really?"
"Yeah, and make it three*."
If I was gonna do this, I was gonna do it right. And as I've never been one for half-measures, I reached past him for the bottle of Truvada, which Charlie takes in the morning. I grabbed a blue devil, added it to the three yellow caps in my hand, walloped the lot in my mouth and took a swig of juice.
"In for a penny, in for a pound." was my response to his questioning look.
I knew I wasn't likely to experience the full hit of side-effects, but it was ... dunno, a show of solidarity I suppose. I can't really put into words what transpired in the gaze between us. It was just one of those things between lovers and I knew I'd done exactly the right thing at the right time. "It just is, ok?" as I'm fond of saying.
Charlie'd had a busy day and after a kiss and a cuddle, quickly fell asleep. I soon dozed off as well and found myself in a cartoon character dream where little soldiers in blue and yellow stood around laughing at little spikey red blobs. The red blobs were not happy - "What the fuck does she think she's doing?" they shouted. I often have strange dreams when I sleep alongside Charlie so the soldiers weren’t really anything new. I've been teasing him for ages that his Sustiva is rubbing off on me. How much the Sustiva actually has to do with it and how much is just my fevered imagination is anybody's guess.
I awoke from dreamland wanting a slash, a drink of water and a ciggie - not necessarily in that order. I floated across the room, donned my bathrobe, visited the toilet on the next floor then carried on to the ground floor for a smoke. By the time I got downstairs I found I was ravenously hungry, despite a huge meal only a few hours earlier. I snaffled myself a bowl of stew from the fridge and wobbled it over to the microwave. The phrase that kept going through my head was "I'm stoned out of my tiny little box!"
Settling down in front of the wide-screen and Will and Grace re-runs, I ate the stew in record time. I can't remember the last time I was so hungry! Funny, I don't recall ever hearing that as a side-effect. I washed the bowl during a commercial break and bounced back into the living room for more re-runs and nicotine. I finally became sleepy again after three episodes and went back upstairs to crawl into bed.
I had more dreams. Or rather, I had more of one dream. The same dream over and over. It was morning and Charlie was getting up for work. We had a conversation. I got up and got dressed too, only to realize I was still lying in bed next to him. Sometimes I’d still be naked and sometimes I was half-dressed and decided I must have gotten back in and dozed off again. But no, wait, I don’t have anything on. In the end, I was laughing at it all, calling it the Groundhog Dream. I don’t even know if I was dreaming that I was laughing at my dream or if I was awake or dreaming I was awake or what the hell was going on. Most perplexing, in funny sort of way.
It wasn’t until I really did wake up the next morning and stood up that I remembered what I’d done the night before. I wobbled and waffled and woozed my way into my clothes. I wasn’t exactly hungover and I didn’t exactly feel stoned or drunk. I did feel weird, of that there’s no doubt. I told Charlie I felt like my brain had been tinkered with. He laughed and said, “Try seven years of the stuff”.
No thanks. My resolve to insist on Reyataz in my first-line has been strengthened. Watching Will and Grace in the middle of the night is bad enough, but wobbles in the morning – no.
I wouldn’t recommend that others do what I did. It seemed the right thing to do at the time; right for me and right for my relationship with Charlie. I have no regrets about doing it and I’m not worried about it either. It is what it is.
*Sustiva – the standard dose of Sustiva is 600mgs per day. For the past year or so, Charlie's been on 200mgs per day of Sustiva. Yes, you read that correctly, 200mgs. He's undetectable. It works for him, although why the venerable Wizard of Poz didn't just switch him out to Reyataz or whatever is a mystery. But for him, it works. When I took three of Charlie’s Sustivas, it totaled 600mgs.
I can't believe it's been over nine months now since my long-term relationship broke up. I realised it the other day and thought - "sheesh, that's enough time to have had a baby!" It's one of the more annoying facts of life that the older you get, the quicker time seems to go. As they say, youth is wasted on the young.
~*~*~*~
Foxtrot Charlie is still on the scene, albeit more on the periphery of my vision than in the spotlight. Charlie has his demons and he lets them come between us. Me, I just go with the flow. What else can I do? He's currently trying to kill himself with Bells Whiskey. He turned up on my doorstep two weeks ago in the middle of a thunderstorm, dripping wet and inebriated. I finally said to him what I've been wanting to say for a couple months now - "There are quicker ways of killing yourself and if you want, we can google to see just how many ways there are."
Rather than take offense, he opened up. It sucks to be that person who has passed this virus on to others, unknowingly. Guilt is a corrosive acid and mixed with Bells, it's a slowly lethal cocktail. There's nothing I can do about it, except be there in the middle of a thunderstorm when a man, empty and hurting, turns up at the door.
And yet to see him in the pub, you'd think he was the happiest man on earth. Life and soul of the party. I know otherwise. I hate knowing but at the same time I'm glad I know. He allows me to see his vulnerable side and to me that says, "I love you" louder than any words ever could.
~*~*~*~
My latest addiction is reading. Been going through nearly a book a day lately and "thank goodness for charity shop books" is all I can say. I'd be broke by now otherwise. In between reading I do my thing on the forum (NO RISK!) and I write in my journal. My journal is old-fashioned pencil and paper and largely unfit for human consumption. I'm in the process of figuring out how to sanitize it into blog-fodder. Wish me luck.
Three nights ago Foxtrot Charlie appeared at my door bearing food and smiling eyes. I was happy to see him as I saw little of him during April and May. Sometimes I have to leave him to his ghosts. I understand. There are times when my own ghosts demand my undivided attention too. Ten years ago I had no faith in the gossamer thread that binds us. Today I do. If you love someone, let them go free….
As I began to prepare the food he brought, I was taken aback by the familiar, unseen hand which from time to time twists and rips at my intestines. Codeine normally keeps this at bay, but I take breaks from it so my tolerance doesn’t increase. I ignored it at first, not wanting to take any of the opiate, but soon capitulated, sweating and doubled over in pain.
Fox has seen these attacks before, but never one this swiftly intense. “Are you ok?”
"No, but I will be once the meds kick in.”
He takes over the cooking, joking and trying to charm my daughter’s slight distrust.
While things are sizzling away in the kitchen, he joins me at the back door where I sit on a low stool, arms around legs, smoking and willing the unseen hand to stop squeezing my guts. He starts apologising for causing me pain. We’ve been over this ground before many times in the past seven months and I don’t understand why he’s bringing it up now. That’s ten years and more in the past. There’s no longer any need to tell me this; I forgave him a lifetime ago.
This morning a turn of phrase in a book brought his concerned eyes looking into my own again, as they had the other night. Like a knife in my heart I suddenly understood what pain he was apologising for – and it wasn’t from the days of our youth as I assumed. He was apologising because I was doubled over with the pain of what HIV physically does to me sometimes. The true meaning of his words never occurred to me when he said them. I hate that he feels responsible. I hate the pain I see in his eyes.
I hope one day he understands there is no blame directed at him in my heart. Truly understands. When that day comes, there will be one less ghost to demand his attention.
As some of you know, I travel to Liverpool for my hiv care. Clinic day starts early - I'm usually up at 4am, just to make sure I've got plenty of time in case I'm having a "bad gut day".
The taxi arrives at 5:50am to take me to the airport.
My chariot awaits...
I fall asleep as the plane zooms out over the Irish Sea...
...and wake up as we roar over the Mersey.
When I first started going to clinic in Liverpool, the airport (then called Speke) was little more than a shack. My how it's grown!
A taxi firm picks me and other Manx hospital patients up in this mini-bus, which smells like rotten socks inside. Not the best way to travel when one is prone to motion sickness!
I’ve been neglecting a number of things lately, this blog among them.
Weeds are rampant both in my garden and in my personal life. PMs and emails go unanswered. I’ve needed new glasses for about a year now; not only am I unfashionable, but I can’t see more than about ten yards in front of my face. I keep my kitchen and bathroom scrupulously clean, but yet the living room carpet needs attention and my desk is an unruly pile of papers, unpaid bills and books.
Why the neglect? Well, fuck do I know. I’ve neglected to look too deeply into the matter. Or rather I have, but I’ve neglected to acknowledge or act on what I’ve found. Since the beginning of November I’ve gone from the pits of despair, to the height of happiness and back down into the pits. I feel both stupid and silly. Stupid because I knew in my heart of hearts that Charlie would end up being a source of pain, and silly because I know I’ve got it comparatively good.
I also feel frustrated because a combination of Champix and Mirena have caused me to slide into a chemically induced depression – as if Charlie’s antics weren’t enough. If I wanted chemically induced depression, I would have used drugs that I could have had fun with in the meantime. Ah well, shit happens.
Tim Horn and I have recently discussed the inactivity of my blog and what possible directions I might take it in from now on. He suggested I be less autobiographical and focus more on current events - and I like that idea. The problem so far has been that I’ve found I couldn’t move forward into this new direction until I achieved a sense of closure regarding what this blog has been up to now. That’s what I’m doing with this entry in my own cryptic way.
Hey, it’s my blog and I’ll be cryptic if I want to. Cryptic if I want to, cryptic if I want to... oops, singing in my head again. Such is life.
I’ve got an example of the type of “current affairs" I hope to be writing about at a store near you...
On (the UK) C4 this week they’ve had “Embarrassing Bodies week" and one of the case histories involved a woman who presented with large labia minora.
No biggie, if you’ll pardon the pun – but she seemed to think it was a very big deal indeed and thought she was abnormal. She wasn’t. Her labia were completely normal and quite sexy. However, this woman was immediately recommended to a cosmetic surgeon. What??? Why wasn’t she first recommended to a therapist to see if she couldn’t become reconciled with what nature gave her, instead of encouraged to be surgically mutilated? I mean, there are webpages dedicated to ways and means of actively enlarging one’s labia minora - for example through the application of weights. Some men and women regard large labia minora as positively sexy. I do. And why not?
Fair enough, if this woman had a few sessions with a therapist and still didn’t like her large lips, then maybe it was time to go for surgery. But to offer mutilation as a front-line therapy is, to my mind, totally unjustified. Next thing you know, they’ll be recommending African-style clittorectomies just because the darn things tend to stick out a bit when women are sexually excited.
It does my head in. It really does. Why do so many women feel compelled to mutilate their bodies in the name of fashion? I don’t get it. Do you?
I met Foxtrot Charlie* fourteen years ago this past December, while he was home on leave for the holidays. Back then, he was an aid worker under the auspices of the UN, teaching people in Sudan how to fish and dig safe wells.
I was single at the time and thought we’d have little more than a holiday fling – but I fell in love and I fell hard. The feeling seemed to be mutual, but he was a “woman in every port” sort of guy who would be going back to Africa in January and so, even though I was in love, I wasn’t expecting much. In a journal entry dated December 15, 1993, I wrote, “If he does feel something approximately the same as I do, then why not grab the chance for some happiness while we have the opportunity? Isn’t it better to have loved and left the country, than never to have loved at all?”
Over the next three years he stayed with me when he was home from Africa. Each time he arrived my heart would soar and my love would deepen. Each time he left I wondered if I’d ever see him again; aid work in Africa can be a dangerous affair. If the malaria didn’t get him (I nursed him through several malarial fevers over the years), an armed-raid might. It was difficult to let him go but he was doing something he loved. I wasn’t about to stand in his way, no matter how much it hurt to see him go.
In early 1997, he came home from Africa for the last time. Shortly after, I became pregnant by him – accidentally – but lost it within six weeks. The pregnancy put an odd sort of strain on our relationship (even though neither one of us wanted another child, so losing it was a good thing) and we split up in May. Over the next two years we’d meet up and spend the night together now and then. My feelings never diminished. I knew even though we weren’t together as a couple, he’d never leave my heart.
I met someone else in the summer of 1999 and we embarked on a monogamous relationship. I locked Charlie away in a little corner of my heart/mind and got on with my life. In early 2001, Charlie tested HIV positive and I followed suit a few weeks later. The new man in my life tested negative and stuck by me.
Over the next six and a half years (out of eight years total) I avoided Charlie as best I could. The feelings that would well up each time I saw him felt like a betrayal of my new man, even though Charlie and I rarely ever spoke, much less touched. If I’d see him in the street, I’d duck into a shop. I didn’t go to places where he hung out. One time, by pure chance, we ended up flying to Liverpool together and sharing taxis to our clinic. The attraction between us was as strong as ever and I spent the next several weeks mooning over him, dreaming about him and listening to “our” songs. Locking him away again took every shred of respect I had for my new man – and then some.
Fast forward to my last blog entry; “A Brim Full of Ashes When You’re 45”. If you haven’t already guessed, Charlie is the “very dear ex” I cut out of my life. I ran into him a few weeks after the end of my long-term relationship and for the first time in a long time, I didn’t run the other way. We hadn’t talked in years and when I told him how good my numbers were without the meds, he picked me up and spun me around in the middle of the pub. “I though you had aids like me!” he said, with a smile on his face that lit up the whole room – just as it lit up every corner of my being. Even after all the years apart, the connection was still there and as strong as ever.
We’ve spent a lot of time together over the past five weeks and I’m happier than I’ve been in years. I love this man like I’ve never loved before – and I feel loved like I never have before. By anyone. His family and my friends – and my daughter – are all happy we’re back together. I don’t know quite where we’re headed yet but for now, I’m happy just being happy. Tomorrow can take care of itself; I’m living in the moment and enjoying every second of it.
Two month ago I felt as though my entire life had crashed and burned. I rose from the ashes into a fresh start with the love of my life and an exciting hope for a future of passionate love I never thought I’d experience again. I can’t wait to see what 2008 brings!
Wishing all my readers a happy, healthy and prosperous 2008.
Ann
*Foxtrot Charlie comes from the International Radio Operators Alphabet and was his call-sign when using radio communications in remote areas of Sudan.
Ah, Birthdays. My 40th birthday (and the six months either side) disappeared down the black hole of interferon/ribavirin. If I experienced the throes of middle-angst that year, I cannot recall. I guess I feel a little cheated really; a time-honoured, teeth-gnashing, drama-queen rite of passage passed me by. Oh well. Birthdays have never been a huge deal for me anyway and I’ve mainly always celebrated having survived another year. This year felt a little different though; perhaps it was a touch of those middle-aged blues I missed at 40.
Sometime early this summer it began to dawn on me that come November, I’d be 45. I started taking stock of my life and looking at areas that needed work. I got my bicycle out of storage and started exercising. I looked into Champix (aka Chantix) and started taking it a few weeks prior to my birthday. I started cooking more and fast-fooding less. I was slowly building up a healthier life-style all-round; I decided I was going to be the fittest middle-aged woman I could be.
I also took a good look at other areas of my life. I reaffirmed my commitment to activism by agreeing to speak on World AIDS Day here on the Rock, along with a local radio interview the day before. I started looking into ways of managing my time more effectively so I could write more and pursue other creative ideas I’ve been kicking around for years now.
Another area I examined was the relationship with my partner of eight years. I felt it was rock-solid, but maybe could do with a little tweaking and updating. We’d been together eighteen months before I got my HIV diagnosis and not only did he stick by me when he tested negative, but he was my rock at the time and ever since. We’ve had our ups and downs over the years – what couple hasn’t – but through it all we remained best friends. That friendship and some shared spiritual beliefs were the bedrock of our relationship. I called him my partner, not boyfriend, because it felt like a totally equal, adult, life partnership. I thought we’d be together until the day one of us died. We’d been engaged for years and there never seemed to be a rush to get married. For various reasons we never lived together, but as my daughter’s grown up and his parents grew old, the day we’d move in together seemed closer. We were solid; unshakeable.
Well, how wrong can a person be? If any area of our relationship was lacking, I guess it was on the passion front. We’ve both been busy over the past year or so and there were the problems with my back and hips earlier this year, and the move, and my “women’s problems”, but nothing, I thought, that couldn’t be worked through. In fact, the weekend of my birthday fell at a fortunate time in my monthly cycle and I’d planned on taking full advantage on the chance to re-introduce some of the passion that had been missing recently.
Too late. He’d started seeing his ex-wife in early October, behind my back, and a few weeks of “talking” progressed to “shagging” just days before my planned, intimate birthday weekend. What made it so devastating was the fact that years ago we’d made a solemn promise to each other that if we ever became attracted to someone else, we’d either not act on it or not act on it until we’d finished our relationship. We vowed to be honest about this sort of thing and never go behind the other’s back. It was something I took very seriously, to the extent of cutting a very dear ex of my own out of my life completely. It wasn’t easy because I still care about this other person, but I did it because I believed in the relationship I was in and loved my partner too much to hurt him in anyway. It was a sacrifice I made willingly and without regret.
Of all the men I’ve loved in my life, I thought he was the one who loved me too much to hurt me. I thought it was this mutual, partnership thing. I’ve never trusted anyone so completely in my life. I thought my heart, at long last, was safe. It wasn’t though and I feel as though I’ve been eviscerated. There’s absolutely no going back now either.
I’m slowly coming out of the bewildered stupor I’ve been wandering around in the past few weeks. I’ve not been active in the Forums because I felt so totally empty and had nothing at all to give. When I say I’ve felt eviscerated, I mean that literally. It was as though someone took a scoop and cleaned me out totally except for my heart. My heart was screaming in pain while the rest of me was numb and empty. I struggled to find the words to describe what was going on – and for much of it I still cannot find the words even now.
Does any of this have to do with me being HIV positive? Maybe a small bit, yes. I don’t think I’ll ever know quite why he did what he did or what the main contributing factors were. He’s not been very forthcoming with that information and I can’t help but suspect maybe HIV did play a part he doesn’t want to admit to, after years of saying it didn’t matter.
For those of you who may be curious about the title I gave this blog, it’s a play on the song Brim Full of Asha by a band called “Cornershop”. You see, I’m a Scorpio and an alternate symbol for Scorpio is the Phoenix. I’d been thinking about the Phoenix rising from the ashes (as I have in the past when my life has been turned upside-down) when this song came on the radio. I started singing along, but changing the words to “a brim full of ashes when you’re 45”. When I finally sat down to write this blog, it seemed to be an apt title.
I will rise from the ashes yet again. This isn’t the first time life’s given me a brim full of ash and I suppose it probably won’t be the last either. And in a pleasing little twist, I’ve discovered that “asha” means “hope” in Urdu so now I'm singing "a brim full of Asha when you're 45". Yeah, I’ll be ok. “Time…” and all that.
Everybody needs a bosom for a pillow!
Recently an AIDSmeds poster expressed surprise over a friend’s positive HIV status because the friend “looks just the same”.
It goes to show that you can't tell by looking at a person whether or not they have HIV. We who live with HIV are your neighbours, your friends and lovers, your parents and children. We could be standing next to you in the check out line. We could be your lawyer or teacher. We could be you. We are you, because you live with HIV too. There will be someone who touches your life, in some way, who is living with HIV infection - whether you know it or not.
We might not choose to share our HIV status with you. Many of us are afraid to share and with good reason. We never, ever know how someone is going to treat us until after we've told them. If a person reacts badly, we have to live with the consequences. We cannot UN-tell.
There are many people who believe they have a right to know our status so they can “take precautions”, such as not shaking hands or sharing our company. Others believe they have a right to know so they can inform anyone they believe to our sexual partner – potential or otherwise. They want to know so they can point and whisper. Some like to host pity parties. It’s not pleasant to be on the receiving end of any of this and sometimes it’s downright dangerous.
~*~*~*~*~
When I was first diagnosed, I feared petrol bombs through the letterbox in my front door. I was diagnosed as part of a “cluster” of infections and within a week, the Rag of the Rock saw fit to publish a juicy story with all but our names and addresses. They named our town, on an island of 70,000 souls. As an old Manx saying goes: “If you sneeze in Ramsey one minute, they know in Peel the next”. I lived a nightmare of fear for months.
I had to tell my thirteen year old daughter, when I’d barely digested the information myself. I had no idea who knew about me, but I did know our cluster was being talked about by everyone - whether they knew our identities or not. Some of us were coping with alcohol and crying in the pub, adding fuel to the rumour mill. I knew there was a very real possibility another child would tell my daughter, after hearing from parents, that I – her mum - had HIV. I wanted the news to come from me, not a spotty-faced, leering teen, so I had to act fast when I wanted to bide my time. The Rag of the Rock forced my hand.
Vicious teenagers and petrol bombs were my darkest fears. Time went by – and nothing happened. No bullies at school, no bombs in the post. I was astonished and encouraged. I slowly stopped feeling like I had HIV tattooed on my forehead. My daughter took the news in her stride and met my doctor. It didn’t stop her from being an ordinary teenager, alternating between tantrums and hugs, and she’s grown into a lovely young woman who I am proud to call daughter and friend.
I’m lucky. For me, the horrible visions of persecution never materialised. I’ve experienced some negative reactions - nothing life-altering - but I know people who are damned to hell by loved ones and others who have been edged out of jobs, homes and lives. I know people who are so deep within the HIV closet they don’t even dare access the internet. I know people who are barely treading water in a sea of fear.
And I know there but for the grace of the universe go I.
I also know it’s a vicious cycle. Our hiding adds to our own stigma and that is perhaps the most bitter pill of all. We hide because we have to and we have to because we hide. But as we step out of the closet and into the light, people see us for who we really are. We are neighbours, friends and lovers, parents and children. We could be you. Only when people truly understand this will we be free of stigma.
When we are free of the stigma, we will be free of the fear.
And YES, it is scary out here, but I’m feeling the fear and doing it anyway. The more I look that fear right in the eyes, the faster it melts away. I know not everyone can join me - but I'll be here waiting for you.
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