You dread an above-knee amputation. It changes your life. I can’t run. Steps can be terrifying

W hen I went to bed, I felt as though my ribs shot out of my chest. They helped expel the pain. And itching: the two were intertwined. It itched. It hurt. I screamed under my breath, “Don’t scratch Don’t scratch!” My hands sprang back from my leg, fingers stretched. Like distressed stars. I shook. If I scratched I couldn’t stop. Vestiges of the scratching compulsion remain.

I’m an amputee. My right leg was chopped off above the knee some years ago. I have a conical vestige of a leg. People call that my “stump”. Ugly word. I call it “my leg”. It is my leg.

People’s experience of amputation differs: this is mine.

People always ask how it happened. The doctors declared I was the unlucky one in a million. I had an unexplained blood clot in an artery in my lower leg. It cut off the blood supply. Gangrene set in. The pain was like nothing I’ve ever experienced. Much worse than childbirth. I was frantic. The leg had to go. I was numb but profoundly relieved. I’ve never cried about it.

My first question after I came round was this: above or below the knee? The answer was the one I hadn’t wanted to hear, but the pain had gone.

My goal posts had been shifted: life would be different now but I was still here. A friend asked a psychologist acquaintance how I’d respond. “Is she a glass-half-full person?” he asked.

Julie thought for a moment. “She’s definitely a glass-half-full person.”

“She’ll be right in six months.”

I was. I had no choice.

Y ou dread an above-knee amputation. It changes your life. The knee has a crucial role in maintaining balance. If your leg is amputated below the knee, you can still do most of the things you used to do. Most amputee runners – think of the Paralympics – still have their own knees.

I can’t run. Climbing steps can be terrifying. I can’t ride a bike. Retrieving things from the floor is problematic. I can’t climb a stepladder. I can’t lift my baby grandson. Without help, I cannot sit on the floor. My life is about maintaining my balance. Not falling over.

I watch children run on the grass and ride their bikes. Vicarious pleasure. It was exhilarating to ride a bike; and I took it for granted that I could walk – even run – on grass and uneven ground. Now, every step is deliberate, tentative. Those other things are in the past for me. A fiercely independent person, I took a while to accept help. People are eager to respond when I ask.

Over the life of any amputee, their vestigial limb goes through many iterations – you gain weight, you lose it; the muscles in the limb wither away. You age. You need a new prosthesis, or new parts for the old one, to keep it fitting snugly.

My prosthesis consists of a hard, conical fibreglass socket at the top; a computer-chipped knee; and a metal shaft where my lower leg should be, to which a foot is attached. The chip moderates the swing of my leg. Inside the socket I wear a thick silicon liner, and inside that a thinner liner. Over the years I’ve also had to wear “socks” – thin ones, thick ones and even thicker ones - outside the liner. At one point I was wearing nine socks, plus two liners and the hard outer covering. Twelve layers in all. In summer it was unbearably hot and my leg sweated profusely.

But my worst nightmare so far was the version of my leg before my current one. After a few years it began to itch and burn. When I removed the socket and the layers underneath, a tortoise’s shell appeared. My leg was covered in adhesive oval blister Band-Aids, intersecting. They kept the blisters from hurting too much.

Often when I went to bed, my leg would go into spasm, shooting upwards rhythmically every few seconds. I’d take a sleeping pill and wait.

I couldn’t bear weight on it. I slept under a nothing more than a sheet despite the growing cold of the nights. Gradually I forced myself to add covering – just thin rugs at first. It was a major achievement to sleep under my doona, well into autumn. I sought cold, not warmth.

At night I take off the leg and use a wheelchair. Every morning I put on the liners and the socket, to which the leg is attached.

My socket is attached by means of a leather strap, with velcro stuck to one side. I push it into the socket and out again through a slot near the base. Then it passes through a metal ring, doubles over and meets together.

In the dying days of my last socket, this was terrifying. Before my shower I took two Panadol but I doubt that they helped. I trembled violently. I’d pull on the strap, as hard as I could, screaming, “Pull! Pull!”

I’d close my eyes, open them again, and continue pulling until the strap reached a distance a centimetre from the slot. I would push the ends together. I’d stand, sway, getting my balance. Take a few steps. As I did this I exhaled as waves of pain ran through me.

Occasionally I’d get it right. The hurt would subside. Much more often, I’d wince at every step. I’d swallow paracetamol all day. Taking the leg off before I went to bed was a huge relief.

I’d survey the damage – blisters, chafing, angry skin. The itching would start.

I fell at least once a day. I risked serious injury, especially if it occurred on the pavement, or on my hard concrete living-room floor. Once, getting into the car, I lost balance and fell backwards. It was raining. I shouted for help. My neighbours heard me. In case I fell over inside, I hid a key out the front. I could call and someone would come. Occasionally I got up by myself – by dragging myself to the bathroom and leaning on the bath.

I tripped one evening, hitting my forehead on a cabinet. My dinner was spread all over the floor. I called the guy who lives opposite. “Jimmy,” I said, “I can’t get up. Can you come over?” My whole face turned purple by next morning, but there was no permanent damage.

M y socket was loose. As a patient in the public system, this meant that, once my prosthetist, George, and I had decided what to do – make a new one – I was on a waiting list. To cast a new socket involves, first, a transparent “test” socket that guides the prosthetist to produce the final version. Sockets are labour-intensive, involving about a week’s work.

Prosthetics, which started as a trade, is now part-craft, part-science and a large part psychology. Like George, most prosthetists are men, reflecting the profession’s origins. George has my deep admiration for his skill.

But I’d become used to the rituals, and the pain, associated with my current life, however hellish. I hesitated for months before I decided to call the hospital, seeking the appointment.

Casting takes an hour. You stand motionless on your one leg, leaning on a frame, while the prosthetist uses plaster of Paris to shape the new socket, following the contours of your vestigial limb.

After many weeks, George rang to tell me the “test” socket was ready.

He “pulled me in” to the leg, now with the new, transparent top section. My right leg was still very damaged. It hurt, just as it had for the previous two years. But the prosthesis went on easily. It took seconds, not an hour or more, as my old socket had done. I wore it home.

Over the next couple of months, my poor leg healed. Balance was still a major preoccupation but life changed. No more blister bandages or paracetamol. It never hurt. I clung to what I had, dreading the day I’d have to hand it back to George so that he could copy it to make the final version. That meant that I’d temporarily go back on to my old socket while the new one was finished.

George promised to finish the new one within the week. “If all else fails,” he said, “just stay in the wheelchair. Don’t put it on. But my guess is, since your skin has healed up nicely, it mightn’t hurt at all.”

Now I’m on my new socket, painted, at my choice, blue-grey on the outside, and at the technician’s whim, bright red on the inside.

There always will be things I can’t do but I can wheel out my rubbish bins. I can step gingerly on the grass. I can walk 3km. I never fall over. Every step doesn’t hurt.

The itching tortoise monster has gone. My ribs stay inside my chest.

For now, life is better.