More to Me Than HIV

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More to Me Than HIV

First published in Gscene July 2020 For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library.For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library. For the project I spoke openly about my journey having being           Read more

More to Me Than HIV: GScene post Aug 2020

More to Me Than HIV is a project that aims to breakdown the stigma that has historically been attached to this virus.  When I saw my piece in last months Gscene to promote the More to Me Than HIV project, I was extremely proud, but a small part of me was filled with anxiety; but why should I feel this way? I have been on effective antiretroviral therapy since the Read more

More to Me Than HIV: first published in GScene July 2020

For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library. For the project I spoke openly about my journey having being             diagnosed HIV+ 32 years previous. Back then there was no treatment and a lot of fear and misinformation concerning how HIV was transmitted. As such stigma was rife, Read more

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Make the next five years count.

B12B22CB-90F0-4988-B414-808F27A4D418_1_201_aThursday 3rd March 1988, I was 23 years old and told I had been diagnosed HIV+ and to make the next five years count. The next few months were a bit of a blur. You see, back in 1988 HIV was a killer, there was no cure and if you got HIV then it was very likely it would  lead to AIDS and you would die. I knew this as a fact as many of the men on the gay scene who I knew were dying. At one point it was not unusual to hear of at least one person in my wider group of friends had died.

I knew I would have to tell my friends and decided to do it when my friends and I had a flat warming party. It made sense to me as I had everyone I loved in one place and felt we could all support each other. One by one a friend was asked to join me on the stairs in the hallway, I think I got drunk while my best mate mopped up the tears. 

A turning point came for me when soon after I was offered to go on a drugs trial, at this point I was showing no symptoms related to the unset of AIDS and so was eligible to go on the trial. I wanted to be one of those who could potentially help in finding a breakthrough. You see, only approved anti HIV medication at the time was a drug called AZT, but it was really toxic to those already ill with AIDS and so for many people it only hastened their death. So, it was and brainer to take part in the study.

I was told the group would be split into two, one would have the medication, the other would have a placebo. During the trial the doctor got very excited with my results, everything was improving. I was also getting some of the side effect associated with this medication as well. So it came as a huge surprise to both me and the doctor when at the end of the trial it was revealed that I was in the placebo group. 

I took this as a sign that I should do everything in my power to stay well, positive thinking was going to be the way forward. I know that in reality I had a lot of luck on my side too but I was determined not to die.

By the end of the decade AIDS eventually caught up with me, I remember one day feeling really ill, it hit me out of the blue. Soon after I started feeling a lump on the roof of my mouth, I convinced myself the lump had always been there, I was in such denial that I was even considering asking my friends if they too had a ridge on the roof of their mouth. However, the lump grew and I knew something wasn’t right but I really didn’t not want to admit it to myself let alone to tell anyone else, because to do so would be to admit that I was dying. So I went into total denial that this was happening to me and told no one. At first it was easy, then I began to lose my appetite and I lost a lot of weight. At first I was able to get away with it, I was even pleased that I could fit into a 30” moleskin pair of trousers. But then the weight kept coming off and I started to look ill but still I told no one.

Eventually a friend intervened and took me to Hove hospital where they had a specialist HIV/AIDS ward.

I was taken to a private room, two doctors came in, one shone a torch in my mouth and said, ‘Ah yes, KS classic kaposi’s sarcoma.’

Suddenly everything I was in denial about was laid out in front of me, getting a KS diagnose was defyining sign that you had moved on from having an HIV+ diagnoses to an AIDS diagnoses. Because of my denial I had not brought anything with me during my hospital stay, so my mate had to get the stuff for me.

I was in hospital for about a month while I was monitored, it was the build up to Christmas, which back then was not a favourite time of year, so I was pleased to be in that little private room, it even had an ensuite!  

When I was discharged I had a course of radiotherapy and the KS went. Everything was fine for a while then I got ill again and was taken back into hospital (this time I did not get the ensuite)! I knew I was very ill an invited my mates up to say my last goodbyes, I even planned what I wanted read at my funeral, a passage from the little prince, which ends:

 

‘Goodbye,’ said the fox. ‘And here is my secret, a very simple secret: It is only with the heart that one sees rightly; what is essential is invisible to the eye.’

I think I was determined that there should not be a dry eye at my funeral.

But then everything changed, a doctor came and spoke to me to say there had been a breakthrough with an antiviral medication. Through this combination therapy, six tablets twice a day I got better. Throughout the following decades I would get very ill and go back to hospital, but that determination that HIV/AIDS would not get the better of me gave me the determination to make everyday count. As the tattoos on my arm say, Carpe Diem and Memento Mori. 

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Love your Library

For many people who have not visited their local library for a long time, they may still have memories of places steeped in silence that should it be broken a stern librarian, wearing tweed and half rimmed glasses dishes out a severe, “SSSHHH!”th

 

 

 

 

The truth is many libraries are now far removed from this past image, anyone who visits Jubilee Library, Brighton (just up from the road from the Dome) will quickly realise just how much things have changed.

The award winning building, was built with energy efficiency in mind. As well as the building itself, Jubilee library’s collection of books are also diverse; from their rare books to the wide range of fiction and non fiction collections. You will find everything there from Africa, Animals, Anne Boleyn to Zombies, Zorro, to Zadie Smith.

As well as the physical books, there are also plenty of online material to get stuck into. All you need to do is to become a library member, which is free and then log into the Brighton and Hove Library website to have a plethora of information at your finger tips. What is your interest, newspapers, magazines, biographies, career help, Which magazine, (in libraries only), UK citizenship information, Academic research, it is all there waiting for you to discover it.
Fan of the graphic novel? not only is there a large collection of all your favourites along with a few hidden gems at Jubilee and Hove Library, but there are literally thousands of  comics and graphic novesl to download for free on to your device for you to view 24/7.

Libraries are all about diversity, In a town like Brighton, it would have been expected that such books would have always been on offer to the public, but it has only been in the last six years that this collection has . Of course, there have been LGBT themed novels available on the shelf, with the likes of Lesbian/gay classics, Radcliffe Hall’s Well of Loneliness and E.M. Forster’s Maurice, but now there are now a wide range of fiction, non fiction and a great collection of DVD’s aimed at the wide range of personalities that make up the LGBT communityth

There had been a consultation on whether in the 21 century if such book should just be absorbed within the libraries collection. I personally feel, that although we are living in a very forward thinking city, there is still a need for a dedicated LGBT collection that can be accessed easily.

In our city of Brighton it may be too easy to think that those within the LGBT community live their lives as if every day was a Pride celebration, but the fact is any one of us will at some point have to face up to any number of obstacles that can have an effect on our mental or physical health. Again, Jubilee and Hove Library, along with smaller collections in the branch libraries, have a fantastic collection of books shelved under, Books On Prescription.

th-3Books On Prescription are a carefully selected set of books, covering a wide range of health topics, including: anxiety, depression, phobias, eating/drinking/smoking addictions, sleep problems, dementia, that you can either access via the library or have recommended to you by your GP.
I’m guessing for those who have not been to their local library, be it Jubilee, Hove, Coldean, Hangleton, Hollingbury, Mile Oak, Moulscoomb, Patcham, Portslade, Rottingdean, Westdean Saltdean, Woodingdean and Whitehawk.

In a time when Libraries are closing across the country, Brighton and hove libraries are going from strength to strength, so go on, do yourself a favour and pop into your local library today to see what’s on offer.

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Bystander: a horror story.

Bystander: A Horror Story.

Spilt milk
As Megan opened the back door, her mother’s voice boomed out from the lounge, “Don’t blame me, blame the cat.”

Negotiating the minefield of saucers of souring milk, Megan mumbled to herself that the damn cat had been dead for years. Stepping into the back room, she looked around at the fading floral wallpaper, marked out with bright squares where pictures had once made the place a home. Back then Lilly had been very keen to present to the world a well maintained home, with everything in its place. However, that was a long time ago, now the house was practically an empty shell. The front room was the only place in the house that was barely hanging on to its former memories.

Megan had had the room converted into a bed-sit after her mother had suffered a small stroke and could no longer manage the stairs. That day had been a test of everyone’s patience; with her younger sister, Gloria complaining that she had little time to spare, as she still hadn’t found the perfect outfit for Charle’s and Di’s wedding. The fact that she would be sitting at home watching the event on the television did not seem absurd to her at all. In the end, Gloria got her husband Nigel to help shift the furniture around downstairs to accommodate a single bed. Lilly had wanted her double bed, but even she had to agree it would leave little room for her wing-backed armchair and precious sideboard. In the end the single bed was wedged against the front door, allowing Lilly to see through the middle room and the kitchen at the back. Her armchair was placed by the window while the sideboard took pride of place against the far wall.

In the centre of the sideboard stood a faded black and white snapshot of Lilly and her husband Joe on their wedding day, to the left, a photo of Gloria, aged fifteen wearing a light pink sash declaring her, ‘Little Miss Brighton, Seaside Queen 1969’. A year later Gloria had married Nigel, a man seven years her senior. Their collection of brightly coloured nuptials dominated the other side of the sideboard alongside a stash of memorabilia from Gloria and Nigel’s various holidays abroad, including: a conk shell from the Maldives, a ship in the bottle from the Caribbean and a Micky Mouse letter rack declaring Florida, ‘The Sunshine State’. Megan had thought her sister had married too young, but now she saw that her sister had been more than canny in getting away with caring for their mother.

The only photo Lilly had of Megan had been tucked behind the other memories. It had been taken the year before she had left school. She hated the face that stared from the frame, all teeth and hair; harking back to the time when she was openly known as the ugly sister; a label Megan had never quite been able to let go off. On numerous occasions Megan had asked her mother to get rid of it, only for Lilly to snap back, “If you’d got someone to marry you, or done something important with your life, then I would have had that framed instead.”

With a deep breath, Megan stepped into the front room and once again the stale smell of her mother and the state of the room reminded her that things could not carry on like this for much longer.

“Is that you Meg?” boomed Lilly.

“Yes Mum, replied Megan, “you’ve lost your teeth again?”
* * *

Like to read more? pop on over to blanchestreet.co.uk for info on all ten tales and how to get your hands on the e-book

 

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