From Our Readers
February 02, 2015 11:59 am

Dear Friend,

When they announced the Olympics were coming to London, I was twelve. That whole summer I kept thinking, I’ll be eighteen when they’re here. Often I didn’t believe I’d ever make it to that day. Adulthood was something that could never be promised to either of us growing up.

Two and a half years after, and I’m doing well. I’m living a relatively normal life. I don’t require a wheelchair anymore and I handle my own medication. My check-ups have become annual, and I haven’t had to bring them forward for several years, something which you’ll remember was a rare luxury when we were younger.

Sometimes it doesn’t seem like it’s been fourteen years since we last saw each other. I still hear your laughter and the way it echoed down the children’s ward corridor, your enthusiasm and energy constantly making me want to get out of bed and join in your games.

Do you remember that night we played hide and seek with our other friend (who had an irregular heart rhythm) and some other people? I forget who the seeker was, but you hid by climbing onto the windowsill in the daycare bay. It was a great hiding place, you were the last to be found; we searched for ages before the shadow behind the curtain gave your position away. But when it came time to go back to bed, you looked at the jump and realized it was too high. You were scared.

“I’ll just stay here, I’ll be fine,” you told everyone, as if you’d planned to make that windowsill your new home all along.

It took us several minutes of reassuring you, including the build up of half the ward’s nurses, before you made the leap and landed safely on your feet.

My mum was angry at how long I’d spent out of bed, and made me promise not to play with you the next day, which was difficult. When I went to return a book to the playroom, you were playing hockey in the corridor, and paused to ask, “D’ya wanna join us?” I shook my head, not having the heart to actually say no. You were the first step in my long quest to believe that normality was within reach. You never let your illness drag you down, and I always admired that.

Last time I had an operation at that hospital, I met a girl who had cystic fibrosis, like you. She was attached to an IV line but was walking around the corridor with it on wheels. I’d just been learning in science about the condition, how one in 25 people carry the recessive gene, and there’s a 25 percent chance for two people with the gene to have a baby with the disease. I told her I knew these statistics, and she added her own: it’s very rare for someone with cystic fibrosis to live longer than 31, the thick mucus buildup is just too much for the body to cope with for any length of time. Your body tries to drown you. What’s more, she said, people with cystic fibrosis find it difficult to gain weight, as their bodies do not produce enzymes to break food down. Some people report having to take up to seventy pills a day, most of them enzyme supplements, so they can simply digest nutrients.

We swapped email addresses but didn’t keep in touch. I thought of you the whole time I was talking to her.

You were always trying to avoid treatment for your cystic fibrosis. I remember when you were hiding from the nurses, and thought the best place to make camp was under our other friend’s bed, who was next to me at the time. You pulled the blankets down on the side facing the corridor, and made a little cover for yourself. I was terrified the raised bed would collapse down onto you. You were like an older sibling to me, and one I never wanted to see harmed.

“Please get out from under there,” I begged you.

“No,” you stage whispered back. “They’ll find me.”

It was so distressing that my mum ended up pulling the curtain between us so I couldn’t see you anymore. “Out of sight, out of mind,” she said.

How I wish that were true.

When I was six, I was at home playing with my sister. She’d marked a plain eraser “yes” one side, “no” another, and “maybe” on both edges.

“Ask it any question you like, and whatever side it lands on, will be the answer,” she said.

“Will my heart problem ever go away?” I asked hopefully.

“No, you can’t ask questions like that, it has to be something that can be decided today,” she said.

“Will mum cook jacket potatoes tonight?” I asked again.

“No,” she said, getting frustrated. “It has to be something like, ‘Should I wear my pink t-shirt?’ Not something that will predict anything.”

I slouched forward, thinking. Playing with my sister always became hard work.

There was a soft knock on the door and our mum entered.

“I have some sad news,” she told us. She said you died waiting for a lung transplant.

My world shattered around me. My vision became fragmented and distorted.

“Come on, let’s keep playing,” my sister said in an awkward attempt to distract me.

I turned to her, knowing it wouldn’t be an appropriate question, but asked it anyway: “Will he be okay in heaven?”

Tears sprang up in her eyes and she hugged me tightly as I gasped for breath. Breath you’d struggled to take for ten years, and wouldn’t be needing to any longer.

Now that it’s been fourteen years, I think of new statistics. I’m double the age you reached. You’ve been dead longer than you were alive.

I often wondered while growing up what things would have been like had you received that call. Would we still be in contact, or would you have drifted off into the world outside of the hospital, like my other friends?

In my state of teenage loneliness, where nobody in the world could ever understand me, I sometimes imagined you had been my soulmate. It probably wouldn’t have worked, but we would have understood each other’s early struggles, things that caused a division between us and so many healthier children. The not-knowing is what convinced me for a while.

After you died, I refused to enter the hospital from the back entrance, knowing we’d have to pass the mortuary. I didn’t want to be near where you had been at the start of the end. Now I mostly think back to seeing you on the ward. You didn’t let anything bother you, and I craved that. Your air of freedom made me believe that anything was possible, and it’s caused me to push the limits of my capabilities ever since. Maybe I’m trying to live for the both of us.

I still dream about you a lot. Sometimes you’re older and we bump into each other on the street, other times we’re still children, playing on the ward. It makes it difficult to distinguish between dreams and memory. Sometimes it feels as if you were a dream in yourself, sent to me to make the pain of the needles hurt less.

If you have any ability to still see me wherever you now are, know I don’t go a day without thinking about you. You made those few years more manageable, a reason to smile. For that, you deserve all the freedom that death gave you, all the freedom life took away.

Always yours,

Sophie

Sophie Lyons is a writer. Her heart is in many cities, but her body is currently in Bristol. You can find her on Twitter @lyonstails or on her blog.

(Image via.)

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