I am writing this exactly two weeks before Christmas 2012. I
remember everything about last Christmas as if it happened yesterday. I
remember how happy I was to be alive on Christmas Day but how sad I was that
the holiday had been all but destroyed because of my diagnosis. I remember
lying on that hospital bed, unable to stop crying until they gave me a general
anaesthetic so they could take the bone marrow biopsy. I remember telling Abby
the bad news, composing the letter to my sister in a Wellington hotel room,
crying all the time and preparing the paperwork for my death.
The year 2012
never happened for me. It was like I was in a giant bubble floating above the
world. In the bubble I was this other person, crazy, sad, bald, detached and
disappearing. I was an alter ego, a ghost of myself. The whole year was about
this body which had suddenly become foreign to me. It was a medical experiment,
worked on by strangers while I could do nothing but watch. I didn’t participate
in the world in 2012 I lived parallel to it, attached to the earth by the
thinnest of wires. I learned first-hand about the underground life of the
chronically sick. Going into this world was like stepping through the
looking-glass. The clocks seemingly turned but time stood still. Waiting rooms
were filled with women in wigs, no one talking above a whisper. Day stays with
ten people in chairs and beds, on a variety of drips and medications, everyone
in a battle for their lives. In hospital, children suffered while parents
comforted them in their arms. Women spent half their year in the same bed
surrounded by reminders of home. Men were so thin their age was indeterminable.
Older people greeted each other with genuine surprise and delight as if they didn’t
know who would make it to the next week. Patients cowered in their rooms while
doctors and nurses patrolled the corridors dispensing medication and advice. It
was a world I never saw myself a part of, but like Alice I tumbled into it and
I couldn’t climb out.
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