Ghost Portraits

On caregiving & invisibility

Just over a month ago, my mother was rushed to hospital with chest pain. After that, my phone started filling with a familiar set of photographs: shadows, reflections, absences; attempts to assert my place in the world.

Scroll back to a year before - almost to the day - and the photos are the same. In a time when I was neck-deep in caring for my husband, it sometimes felt like I no longer existed. Whenever I caught a glimpse of myself, I captured it. The photographs anchored me, placing me back in time and space, giving me corporeal form.

This last month, I’ve needed those images again. My mother was taken straight to ICU in our local hospital, and then to London early the next morning, after a long and sleepless night. I followed her up there, and the first photo appears that afternoon, my vague reflection in a hospital window as I waited for her to have a scan. Later that evening, as the sun set against the bland walls of my hotel room, I captured my silhouette in a square of gold.

Taking care of someone in hospital is a dehumanising experience. Quite suddenly, your life revolves around visiting hours. You hold hands, and notice changes, and soothe, and advocate; you bring in food from home (or cobbled together in your hotel room) to try to tempt them into eating; you help them wash and change clothes, absorb tears and foul moods. You become the centre of a loved one’s existence, and yet you are almost completely anonymous to the hospital, sometimes acknowledged but often ignored, shunted around, made to wait in corridors for indeterminate lengths of time while procedures are carried out, your presence entirely forgotten.

The only way to survive is to be endlessly patient and amenable, to completely subjugate your ego, to make yourself disappear. In those times, you are a ghost. You know yourself only by fleeting ethereal glimpses of your form. To capture these glimpses is a form of rebellion, an assertion of your solidity in a system that will only see you when caregiving sickens you. Your turn.

On Tuesday, my mother endured a 13-hour surgery to replace her ascending aorta and stent a further aneurysm further down the line. She was given a 1 in 10 chance of not surviving the procedure, but she did, after the longest day of my life. In the morning before the operation, I was allowed in early to sit with her in what might have been her last conscious moments. After her pre-operative shower, she had me style her hair, fretting that it would go frizzy without a hairdryer. Then we sat and held hands, and tried to laugh as much as possible.

After she was wheeled to theatre, a nurse said, ‘You okay?’ and I felt a disconcerting pulse of visibility. ‘Yes,’ I said, and the beam passed over me, back to the lives in the beds around me, their needs far greater than mine. My mother gone, I took a photo of her empty bed, the soft folds of the hospital sheets. And then I had to go, setting off to walk London for the day, trying to forget the life suspended while I could not witness it.

We don’t yet know what that longterm outcomes will be for my mum. For now, I’m sitting with her in ICU, unsure whether knows I’m there. Her one-to-one nurse is extraordinary, pausing at every step to stoke her cheeks and whisper to her that she’s doing so well. I was startled today when she wrapped her arms around me and told me I was doing so well too, looking after my mother like this. Susan, she said, your lovely daughter is here. Just for a while, I felt myself in three dimensions.

Later, when I had yawned one time too many, she sent me home to rest. May God give you deep sleep tonight, she said.

Self-portrait while writing this newsletter in my car

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The Colophon

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