A freedom we take for granted

Sunday, November 5th 2000

I was to turn eighteen in two months and four days.

He sat on the desk. If this hadn’t been a spinal surgery consultant’s clinic in a hospital, you’d think we were discussing the next holiday. He turned to my parents. “You’ll have to excuse me, I’ll speak directly to her. She’s soon going to be an adult and this is her decision to make.”

I kept my eyes on him.

“You need it now,” he told me. “Your spine’s twisting way too fast for us to wait.”

“But I have to take my A Levels in May,” I told him. “I can’t miss school.”

He gave me a knowing smile. “You know it will never be the right moment.”

A knot formed in my throat. I knew these were all excuses I was coming up with because I was terrified of the surgery. He took my silence as a prompt to keep on speaking.

“Listen. I don’t mean to tell you I’m perfect but I’ve been doing this for years now. The chance of me making a mistake are there, I’m human, but it’s a small percentage. The way it’s twisting is a 100% that it will soon start pressing on your heart and lungs.”

What did that mean? Would my own bones kill me?

“I’m retiring soon. Do it now while I’m still able and it hasn’t gone out of hand.”

“Now?” I asked.

“The whole team is here from the UK. We’re starting tomorrow morning at seven,” he said. “We go back Saturday afternoon. There’s nineteen surgeries confirmed so far. We’ll fit all of them in by Friday. Each surgery takes the time it takes, there’s no standard. We try to do four a day but we can never be sure.”

“You’re telling me I should have it this week then.”

“I’m telling you, you should have had it yesterday.”

“Look, I don’t know. Give me a number, if I change my mind I’ll call you up.”

He smiled.

Monday, November 6th 2000

There I was, the following day, in the high school foyer on a Monday morning, right in front of the three public phones, red phone card in hand, waiting for my turn to call up.

“Mr. Morley,” I told him. “It’s Denise from yesterday. Do you think you can fit me in?”

“I’m right here with the team,” he told me. “Give me a second.” I could hear him put the phone away but I could still hear him. “Guys, do you think you can do an extra one on Saturday?”

Silence.

Then the muffle. “Denise, they’re on. Be here Friday afternoon at 2pm.”

I laid in my bed that night.

Seven years I’ve been fighting this, I thought. Anything not to end up doing the spinal surgery. Seven years of physiotherapy, body braces, X-rays.

Three every six months they used to take. One from the front, one sideways and one from the back. The spine had curved into a b-shape. Straight from the neck and then curving out towards the right hip. Each X-ray was taken to observe any possible improvement with whatever therapy had been suggested in the visit 6 months earlier. There was never one, never an improvement, never a good X-Ray.

I’d lay on the cold table, holding what looked like an eye mask made of hard plastic on my lower abdomen. “It will save the ovaries as much as possible,” they used to say. Seven years, fourteen visits. Fourteen times three. That’s 42 X-Rays. Till this day, I still wonder if they’re all burned up. If I could possibly ever have children or if we’ve just dried them out.

I laid in my bed. I had picked up that phone and told him yes. I had to go in on Friday. There was no option really. Not the way he put it.

I was scared. What if he does fuck up? I thought. What if I end up paralysed now, just before my 18th? What if I end up in a coma, but can still hear everyone? I really don’t want them to be crying next to me. I really want them to just be there and keep me company and tell me what’s up, even if I can’t move a finger. I want them to be there until I do, until I get out of it, until I switch out and tell them I’m fine, I’m there and I can hear them.

I laid, back flat, on my top bunk bed, looking at the ceiling, a few centimetres above my head, preparing myself for the worst. “Get ready,” I heard myself say. “Yes your hips are there, your legs are there, your feet are there but you cannot move them. Do you hear me? You can’t move them, you can’t feel them, you know they’re there just cause you know but you can’t do anything with them. Believe it, feel it, be prepared.”

If it did go wrong, I wouldn’t have the chance to get my driving licence, or even get out of bed alone, walk out the house, dance. I couldn’t imagine myself without my dancing. A ballerina, Morley had said. A ballerina had had it done too and now she was performing again.

It can be done, you can do it and be fine. I will be fine. Why am I being so pessimistic? I’m not usually like this. But I’ve been so extremely lucky all my life, I can’t have it all. Maybe I’ve been so lucky so far just so that it’ll balance out what’s to come.

“Shut it, Denise.” I heard myself think. “You’ll be fine. Now get that pen and paper and write it – Keep smiling. Make them put it right on top your head. If you won’t be able to say it, they’ll read it, they’ll see the scribbled flowers on the side. “Oh that’s her,” they’ll say. “She wanted us to speak to her normally even if she’s in a coma now.”

Non-stop. The thoughts wouldn’t stop. I was scared but I was not going to let myself go in shock. I had to be prepared to accept any situation.

The next 5 days I felt like a leaf caught in a wind storm. Moments of let me jump and dance around as much as I can, it’s going to be six months of recovery now until I can dance again. Other moments of sudden realizations – I won’t be able to even to take the bus to school for six months. Who’s going to drive me? What if the other surgeries take too long and they won’t manage to fit me in? Do I deserve this for not always following the therapies they suggested? But mum’s the same and aunt’s the same. They didn’t even follow them up with doctors and theirs stopped. Mine didn’t. Will it hurt?

“You’ll be in intensive therapy right after,” they had said. “It won’t be the usual section, Morley brings his team of specialized nurses from London and they’ll assist you all under ITU conditions in a ward that’ll be totally dedicated to you.”

It can’t be too bad if they’ll be there nursing us right? They must know their stuff.

Saturday, November 11th 2000

It’s quarter to seven. The nurse wakes me up.

“Take these pills,” she tells me. “They’re taking you up in 15 minutes.”

“Okay,” I tell her. “I’ll take them and jump into the shower quickly.”

“Take them after the shower,” she tells me.

The moment I swallow them, I understand why. I feel light in the head and a giggle makes its way out. “I feel high,” I tell the nurse. “That’s cause you are,” she says as she tucks me into the wheel chair and turns into a long corridor. I must have passed out then.

I hear a gentle voice call my name. “Denise,” she said. “You’re out.” Before I even open my eyes to look at the nurse, I just instantly take it in. I’m facing the ceiling. My back flat on the hard bed. I mentally go down to my feet, move my toes in a fast, random, piano like manner. They followed my instructions – I am fine, I am free, free to move, free to do whatever I want.

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