"2005 was quite the year for me. Managing and living above a central London gay bar, life was manic to say the least. Partying almost every night with friends, regularly grabbing just a few hours sleep a night (well, day) before opening the bar, my routine in a way became my downfall. During the late summer of that year, I started to experience flu-like symptoms. However, the coughing, aches, drastic weight loss and having to put an upturned bucket in the shower to sit on because of exhaustion became the norm for me. My life was too fast to deal with it, so I didn’t.
I remember waking up on September 1st, hardly able to move. Something was wrong. At that time I was at my flat in East London so I booked an emergency appointment with my GP. She sent me straight to the Royal London Hospital in Whitechapel. I was admitted immediately. I still had no idea what was going on at this point. Tests were carried out that night including one for HIV.
I said to the nurse, “There’s no way I’ve got it, is there? I was tested six months ago.” I made a habit of testing regularly, despite being unaware of the symptoms. I can recall his knowing expression now but didn’t think anything of it at the time.
The next day the results returned; a doctor sat by my bed and told me I was HIV positive, an aggressive strain, with a CD4 count of 9 (normal is 500-1500) and a viral load in the millions. I was also weighed, which I’d subconsciously stopped doing, and weighed in at just over seven stone. He explained my condition further, saying I had Pneumocystis pneumonia (PCP) and that I’d been ‘caught just in time.’ In layman terms I had AIDS.
My parents arrived that evening and I just remember my father having trouble processing it at first, but that didn’t last long. During the next three months of hospitalisation, they were there twice a week (or more) like clockwork, through every complication. They watched me seizure as cryptococcal meningitis and the HIV attacked my brain; they sat in ambulances with me when things were very grave; they watched doctors give me one blood transfusion after the next; they were patient as I lashed out because of cognitive impairment and confusion; they rode a much scarier emotional roller coaster than I did. My mother told me afterwards that they wouldn’t speak a word on the train journeys back. ‘Most of the times we just couldn’t.’
Looking back, I think I was probably in a state of shock the whole time. I was in survival mode. No time to stop and think. That came after.
Eventually, I was moved to a specialist HIV hospice (as it was known at the time), Mildmay. A more homely setting that dealt with end-of-life care and rehabilitation. Thankfully, I slipped into the latter category. Many there didn’t. There the dedicated team built my immune system back up and treated the HIV dementia that had impaired my faculties, such as communication and writing.
I returned to Mildmay last week, for the first time since my discharge in December 2005, and even though the hospital is newly refurbished and in a different location, and their work is mostly neurocognitive, thankfully rarely dealing with fatalities anymore, the work they do, and the passion they all display doing it hasn’t changed one iota.
HIV changed my life. It changed my family’s life. Much more than can ever be expressed in a single article. The post-traumatic stress that followed still haunts me, and depression is something I deal with on a constant basis. However, I’m now nine years down the line, and healthy, on combination therapy. And I’m very proud of myself and my journey to this point. My advice would be: listen to your body, respond accordingly and get tested. I was very lucky to survive and I’m very grateful.
When my father passed away two years ago, my mother asked me to arrange his funeral, I made a point of including this line in the sermon: “My father was there for his children, constantly, without judgement, just love.” That’s the key, less judgement, more love."
Jason Reid, November 2014
Jason visited Mildmay again in November 2023:
"I was a patient here in Nov & Dec 2005. To my surprise, one of the nurses who was on duty today was also there in 2005. I had to get a pic with Comfort and thank her. She was very happy to see me healthy.
CEO Geoff & Fundraising Manager Miklos explained Mildmay’s work today which as well as treating HIV patients, includes rehabilitating homeless ppl with addiction issues. We were also given a tour of the hospital (I was a patient in old Victorian building) and visited the chapel.
A full circle moment. Feeling thankful."