We first saw you in late January 2008, it was, I thought just a precaution; you did some preliminary, basic tests and uttered those immortal words.
“There is a problem, I need you to have an MRI as soon as possible”
Now we were back, it was 3.30 pm on Tuesday 4 March 2008. Billy and I had arrived early for our meeting. We were a little fearful because the MRI had been done and then; I had been called back urgently, for a more in depth slice of my brain.
I don’t know whether you properly understood the degree of naivety Billy and I shared as to possible outcomes.
We had not done any homework, why would we? We had no idea of what was to come.
We looked at my brain as it appeared on the screen, greys and whites appeared to be innocent enough, until you explained the white blobs should not be there.
“The virus has gone to the brain and it is severely inflamed”
This was the first time HIV had raised it head as a threat in almost six years. Everything had been so perfect; Viral load negligible and T cells, better than most non HIV people.
“That can’t be right, my bloods are perfect”
“Bloods are just part of the story, they are actually quite a small part, but; because that is where infection stems from, they have achieved this prominence”
“Because you have not been on treatment, the virus has been able to attack other parts of your body, in this case it has traveled up the spinal cord to the brain”
We were shocked, but this was our second visit to you and I admired your calmness and expertise, I had googled your history and JB had sung your praises.
I may not be the sharpest axe in the wood shed, but I shushed Billy as he tried to argue with you, we were babes in the woods and you were, the closest thing to God I was likely to find.
“There are three possible prognoses, the first is three to six months”
“Three to six months to what?”
“Till you are dead” these words were delivered in a monotone, I honestly don’t think you knew what a shock they were to us. We had thought I would get a couple of pills and walk away from this hiccup.
“I don’t like that one, what is the next one?”
“That is six to nine months, but it is perhaps 50% treatable if; you go back on drugs and, if; they stop the progress of the virus”
This was the glimmer of hope I desperately needed.
“How treatable is the first scenario?”
“Perhaps 70% success rate, if we have got it earlier enough”
There was a life raft. We may have been hanging over the sides in a stormy sea, but we would not let go, we could beat this thing.
“What is the third option?”
“That is totally untreatable, it is seven to nine years, but over that time, you will progressively lose the use of all bodily functions and more than likely, you will start to see early onset dementia within a few years”
“It is a disease called Multiple System Atrophy. We cannot rule this out or in, we need to get the inflammation under control before we can see this more clearly”
You pointed to a spot near the base of my brain.
Basically, I was being told that if I lived past the next nine months, we would have beaten the first two prognoses, but then; may or may not have to confront the third.
I preferred the thought of an early death rather than the lingering, dribbling, choking, shambling, incontinent picture you had painted for the third option. The thought crossed my mind, that successful treatment of the first two, may lead to the reality of the third.
For one brief second, I thought of refusing treatment, but hope resurfaced before I could verbalise this thought.
I have always hated clammy, sweaty hands, I take an instant dislike to anyone, who presents their damp, fish to me in a handshake.
I lifted my hands from where I had been leaning to look at the pictures of my brain. There were pools of water on your desk, I reached for a tissue to wipe my hands and your desk.
You misunderstood my expression of disgust, thinking I was referring to what I just heard.
“It is a bit like that” this was said in a calm, kind voice.
I did not have the heart to tell you, I had merely been revolted by my wetness.
The rest of our meeting passed in a flurry of treatment directions and a projected cycle of MRI’s to chart the movement.
We left and walked out into brilliant sunshine, people seemed normal. Laughing and talking as if nothing had happened.
Billy and I sat on the park bench opposite the hospital, we hardly spoke.
Professor, there have been highs and many lows since that day, but; there has never been a day when I have wished for anyone else to be by our side in this battle.