By today's standards, the wheelchair was small and insubstantial. Two side frames made of steel tubes connected by folding braces and three squares of cornflower blue leather: a back, a seat and one below to hold the battery. The wheels were small and solid rubber and by the right armrest, a box with a joystick was attached -- one speed only. The battery was acid-based, instead of the presently used gel ones; and at the front -- in small side-by-side rectangular compartments -- three balls of red, yellow and green were suspended like tiny upside-down traffic lights, indicating how much of the battery charge was left.
By today's standards it had hardly any power. By today's standards it was hopelessly inadequate. And yet, it was a dream come true for me.
A suburb of Copenhagen
I am four in one of my very first memories and we had just moved from an apartment to a house in a suburb of Copenhagen, Denmark. In this memory, I am helping my father paint the living room wall, standing side by side, each with a bucket of white paint at our feet, the golden sun slanting through the window behind us. As we dip our brushes in the thick white liquid and carefully brush the wall, changing the colour to something new and bright and hopeful, I feel grown-up, proud that I am allowed to help with such an important job.
Another of my early memories is the deep pain in my wrist after we had finished painting. It was the first sign of the rheumatoid arthritis that would at first creep slowly, then start galloping with a burning fury through my body. Leaving destruction in its wake, it fused some joints in fixed positions of deformity, leaving others swollen and wracked with pain.
The stairs to my classroom
It almost killed me when I was 12 and when I went home after another several months in the hospital, I remember the grinding agony in my knees and feet and hips as I walked. I remember the flight of stairs to my classroom, every day gritting my teeth and moving up slowly, pulling on the banister to ease the stress on my legs. Before too long, I was back in hospital, at first using crutches, then a loaned wheelchair and then, at last, as the arthritis fused my hips and I was unable to sit, I lay in bed. I had just turned 14.
The world shrinks when you are stuck in a hospital bed, narrows to food, to television, to visitors, the days blending into one another, in a parallel otherworld of white uniforms, bedpans and watching the seasons change outside the window.
Watching other girls come and go
I was there for a long time, waiting for hip replacements that had to be specially made for me. This was in Denmark, a tiny country, almost 30 years ago. Joint replacements came from England then and custom-made hip replacements took time. And so, I lay in bed, in a room with three other beds, watching other girls come and go. Their broken bones healed, their surgeries, over; and still, I stayed on in that bed.
I did my schoolwork there when, for an hour or so every day, the hospital's teacher would sit next to me and we would try to keep up with classmates I hadn't seen in years. I made friends -- mostly temporary -- with the other kids who came, had surgery and went home, giggling after the lights went out with the girl in the bed next to me, having crushes on boys who came in with broken legs, pulling pranks on the nurses. And always, I read. The adventures found between the covers of a book broke the monotony of waiting in the otherworld of white uniforms, bedpans and watching the seasons change outside the window.
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