Eleven days before Christmas, I drove my mum to a hospital appointment. We sat next to each other, both looking at the consultant while she went over Mum’s notes, and asked questions about medication and rashes and diet and bowels. At times, words I understood floated out of the jumble of information. Like “end-stage liver disease” and “very poor prognosis” and “multiple organ failure”.
Sometimes, things we know might be true actually become true, when someone with authority says them out loud, and in those moments the thread of hope that shielded you from the truth disintegrates like waking from a dream.
Since the beginning of October, from when my mum walked into hospital feeling unwell and looking yellow to when she left, four weeks later, having nearly died and being the illest I’ve ever seen anyone, existence has been split between the knowing and the hoping. The knowing that alcohol-related liver disease is not treatable; the hope that means you can’t believe it. The consultant told us at that appointment that there is a 50% likelihood my mum will die in the next 12 months, which means that I’ve spent a lot of time recently thinking about whether I am a glass-half-full kind of person or glass-half-empty. This opens up a lot of examination of binaries and complexity.
Christmas is a difficult time for a lot of people. I’ve always dreaded it – divorced parents, unequal family sizes (Dad’s big and close in age and geography, Mum’s smaller and further apart on both counts) and the logistical wrangling that has come with that and with being the oldest child of two, by seven years, mean it’s never been a favourite holiday. I prefer the summer solstice, Halloween and Pride. Those are my holidays (yes, I am very gay).
How do you do Christmas when, for one person, it might be the last? I am strongly drawn to the symbolism of this, the last Christmas, the closeness of death an opportunity for resolving family bonds long twisted and torn. But if I treat it as the last Christmas with Mum, I’m both overwhelmed with sadness and deeply concerned about tempting fate. Would it be better to hold on to the hope that it isn’t the last? Hope offers the possibility of significantly more cheeriness than gloom does, but then what if it is the last one and it wasn’t honoured as such? Unfortunately, I’m a Taurus: more prone to endless weighing up of the merits of various scenarios than any kind of decision-making. Especially not when I’m this emotional.
How do you do Christmas when, for one person, it might be the last? I am strongly drawn to the symbolism of this, the last Christmas, the closeness of death an opportunity for resolving family bonds long twisted and torn
I have a quote on the lock screen of my phone at the moment: “Being soft does not mean you are any lesser. It means despite how difficult the world can be, you have held on to your capacity to feel.” I need this reminder. I feel pain and grief and loss and rage and a crushing sadness. I feel these things for my sister and my auntie, for my mum, for myself. I feel them so much that my feet drag and my head hangs and, when we left the hospital, I stared blankly at the car-park ticket machine for too long. I feel so much that I am often startled to watch, as if on a CCTV screen, the calm and collected, shaven-headed, functioning person.
I’ve been thinking about Christmas and about family. Mine is complicated, like so many are. My relationship with my mother: complicated. Difficult, often very often – so difficult that I am quite regularly surprised when I hear how other mums talk about their children, or children of their mums. In the past two months, I’ve learned that my mum is an alcoholic. This is what slowly caused the cirrhosis, which, in turn, is what put too much strain on her kidneys and caused them to fail, too. In time, this will help me make some sense of our relationship. I’ve been thinking about the traumatic things that happened to her, for this to be how her life is now, and what her experiences – many of them before I was born – mean for her and for those who love her. My politics do not stigmatise people with addictions. But my life began with a childhood governed by secrets, and don’t we all have choices about how we respond to trauma? It’s difficult to focus on the present. I spend a lot of energy not asking people what they think happens when we die, at the moment.
It’s outside the scope of my mind to begin processing all this while the clock steadily ticks and Mum refuses Christmas decorations in her house, and my sister’s partner offers to cook everything on Christmas Day so we don’t have to worry about that, too. I realise rather late that it’s the week before Christmas and I have not done a speck of present-buying; every morning, I walk to work along Oxford and Carnaby streets, windows with tinsel and Christmas sales, and the streets are, literally, punctuated with banners that say “Ho, ho, ho.”
Before I had a chance to ask, the consultant told us that Mum is too sick to be considered for the liver-transplant list. In a year, maybe, she said; but there are “strict criteria” and even if you make it on to the list, it’s about an 18-month wait for a liver. There is, she says, “a high attrition rate”. To pass the assessment and get on the list, Mum would have to prove that she’d stopped drinking and would never start again. I ask the consultant if, in her experience, people with alcohol addiction are more likely to stop permanently if they engage in some kind of recovery programme, like AA, and she says yes, very much so. I use the tip of my platform trainer to nudge my mum on her swollen right leg, the leg with the dimple in the shin where, last week, a deep purple rash began and spread out over her body. “I’m listening,” she says, looking at me for a split second, and for a brief moment amid the dark chaos that the last two months have been, that slender dangerous thread of hope sways towards me.