MY HEALTH EXPERIENCE:I belong to the first generation of those being treated for HIV
WHEN MOST people were welcoming in the New Year in the early moments of 2010, I had a heart attack. I put it down to my asthma playing up and battled on. The prospect of spending New Year’s Day in the emergency department didn’t appeal, but a fortnight later I had another attack. This time, I decided to get myself checked over.
That decision resulted in a multiple bypass operation with a team of eight surgeons around me in the operating theatre.
As word of my predicament spread, friends began descending on the hospital. They had to shave and feed me, as yet again I was totally helpless and physically dependent. Many were concerned at my jovial manner and lack of anxiety and thought I was in denial of my situation.
But my story starts further back, in Castledermot, Co Kildare, where I was born 48 years ago and where I went through agonies accepting I was gay.
No one I knew felt like me and I truly felt I was a freak. Like most gay people growing up in rural Ireland in the 1970s and 1980s, I had no role models or any access to information to educate me. It was only when I moved to Galway that I met others who felt the same and I gradually accepted who I was.
My first sexual encounter with a man occurred in April 1983 and, without knowing it, I contracted HIV from him. The virus became active in my immune system within months and in October of that year, I was admitted to Jervis Street Hospital in Dublin where I stayed until December.
I didn’t know what was wrong with me, but I was experiencing a glandular fever-type illness and lost a severe amount of weight. I went unconscious for periods and, when lucid, I have memories of people praying around me. The doctors attending me diagnosed infectious mononucleosis and cytomegalovirus – two illnesses normally found in elderly Mediterranean men.
Little was known of HIV in Europe in 1983, let alone in Ireland. It would be many years before I made the connection that these illnesses were HIV-related.
I survived the experience and a year later I travelled to the UK, primarily for my career as a pastry chef but soon to discover my freedom as a gay man, sexually and socially.
More became known about HIV as the 1980s progressed but I baulked from being tested as no treatment existed. Instead, I focused on an increasing number of friends who were succumbing to the virus.
Over time, I would watch 14 close friends of mine die in front of me, and attend many funerals before anti-retroviral therapy came along and slowed the progress of Aids.
Ten years after that first sexual encounter, I was told I was HIV positive. I was given two years to live due to the low number of healthy white blood cells I had to fight off any infections.
I was admitted to an Aids ward for the first time a year after that. It was a very frightening experience, but over the next 12 years, I would be admitted to hospital more than 30 times with HIV-related infections.
On four occasions, I was told nothing more could be done for me and I was transferred to hospice care, only to recover against the odds. For several months in 1999, I couldn’t eat solids and was fed liquid food through a naso-gastric drip which was permanently attached to my left cheek. It was not a pretty sight and it nearly turned me into a hermit.
I planned my funeral several times, only for friends I had hoped to talk or sing at the event to die ahead of me. My continued survival has baffled both my doctors and my friends. Indeed, it baffled me on a few occasions when I awaited the grim reaper but he never came calling.
I don’t have any magic technique for survival. I have taken an interest in the disease and its development and I am under the care of a fantastic team at St Mary’s Hospital in London. I belong to the first generation of those being treated for HIV and the long-term effects of anti-retroviral treatment are just becoming known, both the positive and the negative.
I have a truly amazing group of friends whose loyalty and support has been heavily tested, and I owe it to them and to myself not to be a victim. Also, I love living and don’t anticipate an afterlife. My glass has always been half-full and I have an insatiable curiosity to be fulfilled.
It seemed a natural thing to volunteer myself both as a chef and as someone living with HIV to several Aids charities where my experiences benefited others with the virus. When many of those charities were threatened with closure, I campaigned in the media on their behalf and allowed myself to be publicly identified as an Aids victim – with, thankfully, no negative repercussions.
So when I found myself back in intensive care in January I wasn’t in denial. I was resigned to the experience of being a patient and whatever my fate would be. I thought this could be the end for me as I was told my heart had deteriorated due to having been HIV positive for so long and because of the various medications my body had endured.
The bypass was not successful and in April, I had three stents fitted to widen the grafts on my arteries. Soon after, I developed anaemia and had to have a blood transfusion. My weight plummeted and I needed to use a walking stick to get around.
I attended a school reunion in Ireland in June and felt very old watching my energetic classmates from 1979 dancing. I got up for one dance and within minutes I was in a taxi on my way to the doctor on call. And the name of the song I chose to dance to? Staying Alive by the Bee Gees.
I am the second youngest in a family of six and I long assumed my siblings would survive me, but in August of this year my brother died in Ireland. I don’t know if I will live to a ripe old age and sometimes I feel jaded from my experiences but I still see every day as a blessing.
I joke to my friends that only the good die young, and I’m not good so I’m here for the very long haul. I don’t have high demands or ambition for myself – surviving is all.
In conversation with
Alison Healy
HIV AND AIDS EXPLAINED
- HIV (Human Immunodeficiency Virus) is the virus that causes Aids. HIV attacks certain white blood cells in the body, weakening the body's immune system so the person cannot fight off infections and diseases caused by viruses and bacteria.
- HIV is found in body fluids such as blood, semen, vaginal fluids and breast milk, and can be transmitted through unprotected sex, a blood transfusion, contaminated syringes or from an infected mother to her child during pregnancy, childbirth and breastfeeding.
- HIV is not transmitted by day-to-day contact, so you cannot be infected by shaking someone's hand, hugging someone, using the same toilet or by being exposed to coughing or sneezing.
- The term Aids (acquired immunodeficiency syndrome) applies to the most advanced stages of HIV infection, defined by the occurrence of any of more than 20 opportunistic infections or cancers.
- The majority of people infected with HIV, if not treated, develop signs of HIV-related illness within five to 10 years. The time between infection with HIV and being diagnosed with Aids can be 10-15 years, sometimes longer.
- Anti-retroviral therapy can slow down disease progression to Aids by decreasing the infected person's viral load.
- The total number of HIV infections reported in Ireland up to the end of 2009 was 5,637, of which 395 were new cases. This was a 2.2 per cent reduction on 2008 figures. Some 156 of the newly diagnosed HIV cases were among heterosexuals, while 138 infections were among men who had sex with men. A further 30 new cases were from injecting drug users.
- The total number of Aids diagnoses to the end of last December was 1,038 with reports of 33 new Aids diagnoses in 2009. The total number of deaths among Aids cases reported to the end of last December was 414, with two deaths in 2009.
Source:UNAIDS and the Health Protection Surveillance Centre
