On the far wall of this room hangs a pegboard: dark varnished wood, maybe four feet high and a couple of feet across, with nine rows of ten brass hooks. Paul brought it up here in the summer of 2014, when I was very sick. I needed two hands to lift a glass of water. I had to crawl to get to the bathroom. And I was frightened; sometimes so frightened that my fear alone made me wish I were dead.

From each of the brass hooks, Paul had fastened, by its string, a brown cardboard luggage tag. On each tag he had glued a small, scaled-down, black and white image of a photograph taken in the 11 years we spent together before I got sick. 90 hooks. 90 luggage tags. 90 careful, scaled-down images.  A labour of love. Or maybe a labour of something else. Hope. Denial. Defiance.

The photographs were the usual kind of photographs people took when taking a photograph meant a camera and a roll of film. Weddings, graduations, holidays, unexpected falls of snow. Me, standing in front of Sydney Harbour Bridge, pointing and grinning. Paul in a baseball cap, sunglasses and shorts, a lilo tucked under his arm, heading for the beach in Greece. The two of us on the summit of Mount Keen, or Schiehallion, or Ben Lomond, windblown, woolly-hatted, nothing behind us but sky. Happy memories. Of course. No one takes photographs of misery.

I’d long ago stopped looking at old photographs, because it hurt to see how much we had lost. But Paul saw them differently. He said they were a reminder of how happy we would be once I was well. Neither of us believed that this relapse, which had already lasted eight months, would go on much longer. We thought that in maybe a couple of months I’d be able to move around the house, watch some TV, listen to audiobooks, sit in the garden, the way I had before.

That summer was warm. Paul opened the windows upstairs, and in the breeze the photographs fluttered like netted birds.

Each morning, Paul left a luggage tag, with its tiny black-and-white image, beside me on the bed. I kept the blinds drawn down because daylight hurt, and in that twilit room nothing changed except the shadows, subtle as ghosts. But every day, there was a fresh new image for my hungry mind.

My task each day – my daily exercise – was to return the luggage tag to its empty hook. Nine steps to the pegboard, nine back. My legs shook, and I had to hold on to the walls. I couldn’t lift my arms above my head, so if the hook was too high, I failed. I would lie on the floor to rest before walking the nine steps back to bed.

After maybe three months, when the images had started to repeat themselves, I asked Paul to stop bringing me the luggage tags. Those grey grainy images had turned us to stone, like creatures bewitched by the Snow Queen in Narnia. I didn’t give up my daily exercise, though. I walked to the window instead. I pulled back the black-out blind a couple of inches, and looked down at the bright slit of street below. Tree. Pavement. Road. Pavement. The gable end of a red-brick house. My leper’s squint. I wanted to see something move. I couldn’t stand for more than a few seconds but sometimes I got lucky, and a car or a van would drive past. Once I glimpsed a pair of children in primary school red sweatshirts, dragging anoraks and bags behind them as they trailed into the red-brick house.

We’ve taken very few photos since I fell sick. No one takes photographs of misery. The only exception is when Paul and I were married, in 2012. The official photographer took 364 digital images of the day. In a few, I’m standing up, with the help of a cane. It’s a black cane, topped with a fake silver pheasant’s head: I wanted a cane like the one used by Maggie Smith as the Dowager Duchess in Downton Abbey. In a few more, I’m in a wheelchair, that we’d adorned with ribbons and felt flowers. In all the rest, when I appear, I’m sitting down. I chose my dress, with a full 1950s skirt stacked with stiff petticoats, to look as good sitting down as standing up. It’s a grandiose dress. On a couch for the family photos, I take up the space of three people.

We picked out 30 of the 364 images for an album, but none of the photographs where I’m in a wheelchair made the final cut. I love being in that wheelchair. It has taken me to places and people my frail body would never allow. Without it, I couldn’t have attended my own wedding. Without it, my present self might as well be stone. Without it, there’s something false about the whole album. I could tell you that the wheelchair’s frame squashed my full skirt, that it cramped my style. I could tell you that I looked like a Barbie doll in a ball dress stuffed into her baby sister’s buggy. All these things are true. But the real truth is that, while I’m happy enough being wheeled around, when I see myself sitting in a wheelchair – when I’m on the outside, looking in – something tips inside me. It’s like looking over the edge of a cliff.

The luggage tags still hang from their hooks, but from here, from my bed, their images are tiny, no more than abstract shapes of black and white and grey. Three years later, I can walk over to them several times a day, if I rest in between. But I rarely look at those photographs now. When I do – I’m tempted to write that when I do, it’s like looking at pictures of people who have died, but that would be facile. It’s more like looking at pictures of people we once knew well, but who moved abroad 10 years ago, and we haven’t seen them since. We’d gladly meet up for lunch or a drink, but it wouldn’t take long for us all to realise we no longer had anything in common.


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