Paulo had a strong and fluid grasp of the English language and could express himself fluently and persuasively in both spoken and written forms. He was also fluent in Spanish and Portuguese.
Waiting For One Point Zero (Written by Paul 1998/99)
A consciousness wades laboriously our of the sea of sleep and throws itself, gasping onto the beach of morning. After a time it rolls over, sits up and then begins to play with the seashells and driftwood that are the night`s dreams, washed up on the tideline.
Down through the clouds from the horizon, reality descends, hurtling like an airstrike. Bleak and cold and sharp the world is trying to pry its way in through sticky eyelids. I am warm and comfortable under my covers. Curled up like a dog, I am happy just to exist here floating in this warm fuzzy feeling.
I move my hand up to scratch my nose, but as it passes over my chest, I feel the tubes which stick out there and a pang of sadness and realisation stirs inside me. It is never very far away from me. Even in my dreams now I am sickly and weak. I never try to fight the monsters there. I always run or hide or climb a tree. It is often in this way that I remember, at the start of my day. I remember also what Naomi once told me; they say “live for the moment”, but sometimes when the moment is just fear and paint it is worth living for the future. So now, although forced to live in these moments that stretch out to form the hours, days, weeks and months I must endure, I am living for the future.
On the 7th of July 1998, something happened to me which was to smash my entire life into tiny little pieces. I was diagnosed with Acute Myleoblastic Leukaemia. Everything I had planned and hoped for was gone. All that I enjoyed, so much of it taken for granted, was snatched away in an instant. A freezing icicle pierced me through my stomach and my spine and I doubled up in breathless shock, held on tight to my Dad and cried. I howled. Coursing through me was a deep, sucking terror, a primal fear where everything so safe and so secure around you is gone and you are naked and paralysed before the teeth of reality. “I am going to die”.
What frightens me most is that the losses I have suffered will be permanent. My health is gone at the moment. My hair has fallen out. My body is frail and thin. I can not run, or swim, or even take the dog for a walk in a field. I can not look at the sky, I can not go anywhere or do anything with my friends. I cannot fall in love or have a family. What it boils down to is that I cannot be a person. I am a patient. I have found this experience dehumanising and yet it has opened my eyes to aspects of myself and my humanity which I may have otherwise taken many long years to discover, if indeed I did discover them at all. I want back so badly that which has been taken from me; my youth, my health, my vitality, my freedom and my independence. Yet these things I am assured of if I survive. It is just a matter of time. What I have only recently realised is what I have gained that I did not have before.
My Grandfather fought as an infantryman in the second world war. He died in 1986 from lung cancer. So in this respect at least, I can truly empathise with him.
I have never been a soldier or fought in a war, but I have stood on the brink of the abyss. I can also concur with his conclusions on the most important things in life, the only thing I would add being health. That is what my experience has taught me so far. I have been blessed with a depth of compassion and understanding which many people never know. But what a price to pay. My dad said to me once, something along the lines of “you are part of an unfortunate yet privileged elite”
Thursday 7th January 1999
My dad just woke me up. I have been sleeping off the effects of the medazelam – the sedation used on me earlier today at the hospital where they took yet another bone marrow sample for analysis.
That was at about one o clock. It is now five thirty and my dad is telling me something. It takes me a couple of minutes to work out what he is actually saying, because I am still fairly groggy but, when it sinks in, I begin to experience a feeling I have not felt for months.
“The doctor just rang. He said they had looked at your biopsy and there is absolutely no sign of the leukaemia at all. Paul`s leukaemia is flat.”
I glow. I am now ready for my final treatment – the bone marrow transplant from my sister Mary. That will finish it once and for all. Thank you Moa. Thank you.
Tuesday 19th January
Well everybody, here it is. Crappy new year. I have now been given a date for my bone marrow transplant; the ninth of February. I get admitted to hospital on the second, and somewhere in between the two I have the conditioning (chemotherapy and total body irradiation).
Time has gone by since Christmas and I am back in limbo again. It is definitely better to be out of hospital than in, but I feel just as alone and stuck. Maybe I have got used to being apathetic about everything. I have become very adept at becoming nothing.
To pass the time.
So I stare into space. I have been spending too much time staring at that evil screen, watching TV or playing Playstation. I want to get out of the house and go somewhere. I cannot move on with anything until this over. I fear the days that are coming, but I want it over as much as I try to hold it at bay.
Today was hard. I didn't meet Charlotte in Bath today as planned because she was in Bristol. She phoned me later on from Sarah`s house and I went over. I only stayed for an hour then I had to go and pick my mum up from work. I cried as I drove into Bath. I just want to be close to someone again. Maybe I felt a little sting of jealousy for Charlotte getting things together with Chao, but it makes me realise how far I am away from that. How far away from anyone kissing me on the lips, because they fancied me. That's as much a problem in the way I feel about myself at the moment. I want to wake up next to somebody in the morning. Somebody I wanted. She has been that person for a long time, and I get a little echo of that in my heart every time I see her, even though I have given up on it.
I am so fucking sick of this.