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Personal Stories


 

David's Story

The course of my life living with the virus has been a long and serendipitous one.  In the early days of the crisis, reports were seeping out of the States that gay men were dying of a mysterious disease.  A torrent of premature deaths ensued.  At the time I was suffering with flu like symptoms and other symptomatic conditions. 

By the time I was diagnosed with KS, the icebergs were flowing through letter boxes and floating on to T.V. screens. In all probability my life expectancy would be curtailed....  Despite a terminal prognosis I kept my head above the wave of eulogies, funerals and fond farewells.  In my Hamlet moments my feet were stuck in the mud of denial and indecision.

Fortunately my survival instincts swept many doubts and launched me into a very productive period.

The River House came into my life 5 years after diagnosis day in 1991. Achieving many goals during that period, I was also fighting an undercurrent of symptomatic illnesses,  some extremely rare and confined to the medical history books. For 22 years this safe haven has saved me from myself, inspired me and supported me in times of total despair and and it has been with me on my journey when I often diced with death.

From its windows you can see the mighty River Thames, sometimes a millpond, sometimes a raging torrent. Even now I can be in the doldrums of my mind and sometimes in the storm of serious illness.  The River House has a becalming, healing effect with many therapies on offer.  The community has reached out to me at times of grave illness and supported me at home or in hospital.  When I recovered I was always greeted in the House as the more than Prodigal Son.  What has continuously impressed me about the project is that it is absolutely people centred.

It has had several incarnations and re-invented itself with the ebb and flow of the demands of its clients.  At the centre of this refuge is the lunch club where anyone can drop in who is affected by HIV.  The food is home made and nutritious but above all, it is the coming together of people with common concerns and anxieties that sets River House apart.

The doors open for all living or affected by the virus and I would tell the world that that a cornucopia of goodwill and love awaits you.

 

Maria's Story

Mum came from the north of Italy, whilst Dad was from the south. This was a clash of culture. I grew up with my parents in the south and spent my summer with mum's family in the north. From an early age,  I was conscious of differences in cultures. I experienced some difficulties as a child and became quite frightened and very introspective. For years I spent most of my time indoors playing card games with my younger brother. From the age of 8  and for 10 years I trained as a professional gymnast.   I was among  the top 4 at regional level.  At 18 I passed my diploma in accountancy.

At the age of  16,  in 1980,  I met my future husband who worked in Milan as a chemist for a pharmaceutical company.  One thing led to another; soon he was injecting himself with morphine and heroin.  When the addiction became uncontrollable, he moved back to the south to study at university. Whilst there, as a result of sharing a needle,  he became infected with HIV. He transmitted  it sexually to me. It seemed pointless to ask him why; I then began to use drugs myself out of despair.  That was in 1985.  Somehow that same year, we got married but five years later we separated. I went back to my family and, although they loved me, the fear of judgment from others led them to put me on a plane to London. I was 26 years of age.

However, it was love at first sight.  I was taken by this sparkling, glittering and careless  metropolis. I  felt I could explore my identity without fear of judgement.  I was free to be myself, away from the restrictions of more provincial norms.  In 1990 I entered into a  relationship which lasted three years.  We had a child. He was the love of my life! He was such a charming,  popular and bright kid. My son died in  2005 within 6 months of diagnosis of non Hodgkins lymphoma.  My son was another innocent victim of the HIV virus. I have asked myself so many times these questions:  was I wrong to have had a child and to fulfil my maternal instinct?  There are no easy and simple answers.  I carry with me an emotional pain all the times. I take comfort in the memories I have. Recalling the good times we spent together I always say to him “Our love never dies”.

I then joined the Expert Patience Programme, a self-management program for people living with chronic illness,  run on behalf of the NHS.  It helped me to re-engage with life after my son’s death. Initially I was a participant, I then became a tutor and I regained confidence in myself.  

I have had other upheavals since then and it is with heavy baggage that I have come this far. I am the same joyful, friendly, optimistic person I was and I still believe in love and happiness. Life has driven me to unexpected places and people. While travelling I have been fascinated by different landscapes in different seasons; diverse and unexplored, where I wanted to stop. At other times I have simply decided not to and to continue my journey until the next end.

At the moment I am studying as an Accountant technician. Good health permitting,  will eventually soon find a job in that remit.

 

Alain's Story

I am often asked what it is like living with HIV. I was diagnosed 20 odd years ago.  I say odd, because I have long stopped counting the years.  At the beginning, though, every year counted; because an HIV diagnosis was like receiving a death sentence. 

HIV doesn't define who I am, no more than my sexuality does.  But the impact  of HIV on my life and my mental health over the years has been considerable.   There is no doubt that It has changed the course of my existence. 

Of course the credit for surviving the plague goes to anti-retroviral drugs.   Though it hasn't been an easy ride and is still not.  Nausea, fatigue, andneuropathy are some of the most common side effects I experience on and off.   With time, though, I have learned to cope and put up with the side effects, however debilitating. 

What really worries me are consequences on my brain and cognitive functions of living with HIV and taking medication for so many years.  I turned fifty last year.   Over the last couple of years, everything has started to slow down, like an obsolete computer that is puffing away on it's last leg. I exaggerate, but not by much.

My capacity for organisation and problem solving has deteriorated.    How do I know that? I am a keen chef in the kitchen.  I now have to stay clear of complicated recipes for fear of a disaster.  My attention and  concentration are poor.   Reading long novels with lots of characters is no longer fun.   By the time I am half way through I am confused and muddled.  The worst thing is my memory.  Remembering appointments or people's names is almost impossible unless I write them down. I am now often searching for words.  I am not as articulate I used to be.  I can no longer improvise a speech, it has to be written or I am lost.

It would be simple to put my predicaments down solely to age. Though whether 50 is old is truly  debatable, there is in fact mounting evidence to suggest people who have lived with the virus for a long time are ageing faster than the average population.  Whist antiretroviral drugs are very effective to attack the virus in the blood, to the extent that most people now have undetectable viral load, the brain barrier is far more difficult to penetrate and target.  It is thought the virus uses a sort a Trojan horse mechanism to enter the brain.

I am not pretending to be an expert.  But it is safe to say that the medical and scientific community has yet to fully comprehend and measure how the virus and the medication are impacting on the brain.  After all, I come from the very first generations who experimented with combination drugs.  We were guinea pigs and still are!

 

Malcolm's Story

I am in my sixties. A long time ago,  longer than I care to remember,  I was diagnosed with HIV.  My coping strategy for many years, to speak the jargon, was denial. You know, if you don't think about it,  the thing will go away. I threw all my energy into building a career and a business. I was very successful and made lots of money. I travelled around the world, stayed in the best hotels, ate the best foood.  The good life!  In all appearance I was doing well. I was a man who had refused to throw the towel in. That my partner died in 1987 of AIDS didn't change my perspective. Denial, full steam ahead!  And then slowly but surely things started to take a different turn. I became ill, first with little things but soon it got worse. I could no longer cope with the pressure of running a business. I went bankrupt and lost everything.

They say that every cloud has a silver lining. It is true. What happened  to me in the early 90's forced me to re-examine my values and priorities. First I had to acknowledge my diagnosis and stop kidding myself that I could go on like Peter Pan in a cloud. I woke up, uncertain as to what I was going to do with my life from then on, ready to adapt though. I went back to work, mindful of not overdoing it. Believe me, money  hasn't got the same appeal  when you are unwell.

I have be coming to River House for a couple of years, since retiring. It's a home from home. The days I lack the energy to cook, I come to eat our Kathy's delicious food. The days I feel a bit down, I come to spend time with other service users. The days my body aches, I come for one of the many therapies on offer. Sometimes I need help with paperwork. Time gets shorter as  you get older but  River House has given me a new lease of life.

 

Andy's Story

46 years ago I was born in Wolverhampton. At eighteen, I was diagnosed HIV positive.  It was a terrible shock to be told that I had AIDS and only two years to live. In the mid-eighties, there was no triple drug combination, no hope, just death for certainty. I was scared. Worse, very lonely. Thanks to an indiscretion, my friends found out and  became very distant before pushing  me away.  I couldn't take it anymore.  One day, sitting on the staircase outside my mum's flat, crying, I  made up my mind to move to London. Of course I was running away from reality. Wouldn't you if you had only two years left to live and nothing to live for in a provincial town? And so I  became a party boy on the London gay scene.  Remember Copacabana,  Heaven or the Fridge? I was there having fun,  often on drugs, trying hard to numb the fear and the pain I felt in my head.  Months went by in a blur until I met Gary, who was also positive. We became inseparable; he was my soul mate.Three years later, he was dead. End of the escape road!

I was depressed and suicidal for weeks on end. Until one day,  inside my head somehow I found the strength to ask for help. Not as easy as it sounds! First I had to accept that I could no longer cope and put aside my shame. I don't know what I was expecting the first time  I went to River House. Little to be honest, I was so hopeless. When I look back now, it was a lifesaving decision.

Meeting other people struggling like me to make sense of their life, to cope with HIV, made me realise that I was not alone. There were others I could share my fear and pain with, exchange information with.  I slowly recovered from depression,  more confident, determined to look after myself. Oh, I have had my  share of AIDS related illnesses over the years.Pneumonia  almost killed me.  But I never gave up the fight for survival. Twenty eight years later, here I am to tell the tale. I am alive! Yes in part thanks to medication which eventually became available but River House played, and still does, an important role in my survival.