by Joe Hammond
‘You mean you’re still upset about the table?’
‘I don’t know why you were being so difficult about it.’
In some ways, it’s surprising that my father listened to everything I then had to say, but I think all bullies hate themselves and all they really want is for someone to stop them. And I don’t think I did that but, for the briefest of moments, I think he wanted to listen.
What followed was something of a role reversal because I spent several minutes talking about matters that were so clearly of no interest to him. I explained what it felt like to want to live in a way that makes your children feel safe and cared for. I said I felt sorry for him (never helpful in a conversation) that he never had the opportunity to feel this way about his life. Sometimes people like a bit of sympathy and sometimes they don’t. In this case, I wasn’t sure because he didn’t say anything. But then I realized that I hadn’t actually asked a question, and that he may have considered what I had to say as a complete statement that didn’t warrant an answer.
So I decided to ask him, quite unsuccessfully, what he thought life might be like for Gill and Tom and Jimmy over the next few years. But I think what happened is that he’d become overused to my statements, and missed my slight change of inflection; either that, or he was employing some kind of unwritten rule limiting the time allotted for one participant to be allowed to select the subject matter of a conversation. I imagine this would be like one of those time counters used in serious chess contests but, in my father’s case, it would be a piece of hardware only issued to his opponent. Because, instead of replying, this was the point at which he alerted me to the presence of his bucket list, which he appeared to feel was being overshadowed by my terminal condition. He expressed some concern about this, and reminded me of his age. Eighty-three. And only a few years left, apparently. I hadn’t known about his bucket list. I wonder what’s on it? Because it seemed that a little too much time had been spent on other people’s misfortune and I think he needed to express how short-changed he was feeling in not having had the opportunity to tick off any of his items.
It’s interesting that conversations are such highly efficient structures. I suppose we are social animals and everything we say to each other has a kind of melodic logic. It may have seemed that my father had changed the subject but, in bringing up his bucket list, he was very astutely addressing the other question I had wanted to ask, which was whether he still felt that I should be indulging him. The notion that I should be had nibbled away at me since our visit but, since my diagnosis, it had become a much more pressing question. I was fairly sure that his concern for his bucket list had indirectly answered my query, but I decided to ask the question anyway, in a purely rhetorical sense. And what surprised me was the controlled anger that came out when posing this question to him. It wasn’t something I’d ever presented before, certainly not on any occasion when it had been warranted. It felt a bit like I was spitting the question out – expelling perfectly proportioned pockets of lung capacity through the tiny gap between my bottom and upper teeth. And his response to this question – rhetorical or otherwise – was an uncharacteristically lengthy silence.
So much of what we say is self-evident. A lot of what is said never really needs saying. And this was definitely the case when I then reassured my father that I wasn’t frightened of him any more. He claimed not to know that I ever had been (which he probably didn’t) but remarked that he considered it an incredibly rude thing for me to say. This struck me as quite an odd response; the kind of response that causes the recipient to look upwards at a 45-degree angle, as if pondering a taxing piece of mental arithmetic.
But of all the things I said to him in this conversation, I think the statement that riled my father most was telling him that I loved him. Actually, I was unfairly provocative because I repeated this a couple more times. And when he emailed me following the conversation, it was these repeated statements that proved most controversial. He couldn’t seem to square these statements with what had preceded them. And that’s a shame, because I couldn’t have made them without the details that had preceded them.
I don’t know what I expected, but this proved to be an ending. The passing of time hasn’t helped. Something had been done to him. I think that’s how he feels, and always has, it seems to me. But I suppose the last thing I would say about my father is how resourceful he has always been, amidst the carnage of other people’s lives. I find that quite impressive, in a way. And whilst I feel sad for what he has denied himself, I worry less because of this. I picture him at home, having redrawn the circle of his life, and living passably within it. With his memorabilia, and his soft-rock mix-tapes; the visits from his chiropodist and the ‘lady friend’ from the local clothes shop.
And maybe with a little caterpillar he has stopped to notice, as it slowly makes its way across his garden path towards the fresh green leaf – lying exactly at the mid-point of this journey – that a kind and gentle elderly man has laid down for its refreshment.
When I reflect on the way my father’s life has ended up – absenting himself, as he largely has, even from contact with Gill or his grandchildren – I wonder if this is really what he wanted all along. Not the intrusion of people making claims upon his life, but these little things instead. And also that he has succeeded in that rarest of achievements, in finding for himself a kind of peace.
What Dying Really Feels Like
I’d been wheeled back through the ward on a commode with my naked bottom hanging out through a hole. And from behind my curtain the nurses then hoisted me to standing, with my pants and trousers around my ankles. I now have limited rotation in my trunk and shoulders, so I’m fully reliant on others for help. One of the nurses was kneeling down behind me with a bowl of hot soapy water, and the other nurse – the one in control of the hoist – had dropped her hip, and was waiting there as she leaned lazily with her hand on the bony rim of her pelvic girdle, like it was the lip of a garden fence and she was taking a break from gardening. A brace was protecting my neck weakness and I was able to look out through the long window behind her, at the view of Headington Cemetery and the scuffed flat greenery of Elsfield beyond.
This had been my second experience of having my bottom wiped, but now I’m well into double figures. I went from the hospital to the hospice, where it’s not unknown for four nursing staff to be present as I’m wheeled to my en suite in the standing hoist. Already at a height of six foot three, the hoist platform elevates me a few inches higher than normal and it all feels quite conspicuous. I’m attached to the hoist by a belt and, with my neck collar, I can feel a little of what the manacled King Kong must have felt, transported by ship initially, and then paraded on the back of a lorry through the streets of New York.
Once I’m stood over the toilet, someone drops my pants to signal the beginning of one of the more technically challenging procedures here: to locate me on the toilet seat in the same way that skilled parachutists try to land in a circle. If I were in their position, it’s a procedure, and an act of teamwork, I would relish – and a lot of it is completed with subtle nods and glances, as is the case for a lot of team sports. It’s a two-person operation, this one, with the first participant taking up a crouched position, with my hips in both hands, to guide me on to the white oval target. But this is not the skilfulness that should be trumpeted here, in the same way a person who simply dunks a basket after receiving a high long-distance pass should really be the least celebrated player in this particular basketball move. The nurse at the helm is the player, because they have to wheel the hulking hoist apparatus with one hand, whilst operating the down button that actually lowers my bottom precisely into place. If another couple of nurses are present, they tend to be little more than spectators lingering in the doorway.
One of the added levels of difficulty is that the toilet in my room appears to have been custom-made for a tiny old lady, so that when I land in place my small termite mound is only visible momentarily before s
inking into the soft pillow of my scrotum. There’s no real way to preserve dignity in the situation and I have completely given up on that. To begin with, most of them had been aware that I had that requirement for some kind of dignity, and had taken the opportunity – once they’d lowered me onto the seat – to cover me up, but after a while it had all felt a bit futile, and now none of us bothers with any kind of pretence. Given that my naked bottom is lowered so sportily into place on such a regular basis, it doesn’t really matter what happens at the bottom.
I’ll usually remain here for several hours – strapped in place, my neck braced – with hot drinks passed to me at intervals, and a little workstation established to my left-hand side. Yesterday I spent six hours of my fiftieth birthday sat on this hospice toilet, with a bottle of good Scotch wedged between my knees. As my body declines, the intestinal tract also loses impetus, and its contents slow to a crawl, like the stinking, stagnant waters of an urban industrial waterway. I can’t really tell what deficit is killing me with this disease – it’s probably respiratory failure – but if I think about daily discomfort, or even fear, the great peril is further down, where my colon has become the repository for fallen masonry, discarded shopping trolleys and an unwanted leather sofa.
*
I was in hospital to have a piece of plastic tubing threaded through my gut, and out through the wall of my abdomen. From this new orifice, the tubing runs for about eight inches and I tape it to the side of my belly to stop it dangling. A little tap fits on the end, so that the transparent tubing offers a window into the gemstone colours of gastric juices: a flowing syrupy nectar cordial flecked with flaming orange deposits. It’s like some fancy inside-out architectural marvel, neatly combining interior and exterior features. Or maybe an extension of the popular taste for exposed features: exposed beams, exposed brickwork and now exposed gastric juices.
Initially I wondered if the tube had been a mistake. I was able to keep it taped up, as if it was a piece of body art, whilst continuing to consume vast amounts of stinky soft cheeses. There has been something sad and end-of-season about my recent period of make-believe gluttony, fooling myself with selective fine dining, even if I am staying in a hospice – as if I am a person without any swallowing difficulty at all, and I’m something quite the opposite: a gourmand or, even better, a bon vivant.
But the real experience is so stressful, or even a little scary, for anything that isn’t soft and squishy. I’ve become aware of how slick and smooth the swallowing process usually is because, in feeling this loss of functioning, I am now more aware of the effort it takes for any tiny morsel to make its way towards digestion. The whole experience is so sluggish, and makes me think of disaster movies from the 1980s, in which a frightened group of survivors face a labyrinthine route to safety, through a disastrous inferno or the capsized hull of a luxury cruise ship. This might sound melodramatic, but my trachea has become something like a dreadful dark precipice for peas or fragments of pastry or grains of rice. The wrong material regularly makes its way down my windpipe and I’m told, given my declining lung capacity, that the infection risk from this misdirection represents my most likely cause of death from this disease. I can feel it precisely when something in my gullet is at risk: a morsel languishing in the wrong place, at the opening of my trachea. At this point I slow my breathing right down, concentrating on subduing my inhalations until this fragment makes its way on to a place of safety. It’s the point in one of these films when the party of survivors traverse some terrible drop and the hero of the movie hangs back to take each one by the hand, encouraging them not to look down, until someone does.
I was told, once I started using my tube for my nutrition, that it would gradually start to change colour: to something surprising, like black or pink; something opaque, masking all the juicy backwash. Apparently there’s no predicting the colour but, if I could request it, I would opt for the colour of both gangrene and grass.
About a week ago, very shortly after having the tube fitted, this possibility was brought forward, quite suddenly. It was the moment in this disaster movie when the narrow gap above the ravine opens up, and almost nothing can make its way through, or when a huge risky leap is required. I had expected this to happen more gradually, not huge slabs of the precipice crumbling away at my feet. But with further gradations of change now almost impossible, actual food is quickly becoming even harder for me. I can still sip soup through a metal straw or, with a teaspoon, still eat the gooey cheese that friends keep dropping in here as a gift, but anything more than this now feels like an act of recklessness. I do wake with forgetfulness, or drift into impulses for this or that favourite food, but instead of this I’ve now experienced my first moment of looking down at boring creams and whites and beiges piping through into my belly. These are no longer the colours of danger, but I can see that my transparent tube shows subtle signs of misty discoloration, and all the excitement and all the expectation is now to find out what colour I will become.
*
A few days ago I heard what I thought was a young girl sobbing in the corridor outside my room. I’m in what the nurses refer to as the green corridor, just opposite the chaplain’s office. I don’t see any of the other patients because most are too unwell to leave their rooms, but I see the families and, when I heard the crying, took a few moments to make certain that this voice couldn’t belong to a patient. The crying went on for some time and I became worried the girl was on her own.
I have to be hoisted out of bed now, so it would have been completely impossible for me to help. I pressed my buzzer for one of the nurses to come and it took several attempts to explain that I didn’t need help myself, but that I was worried about the girl outside. Then I heard the story – that this was a seven-year-old girl whose father was very ill in the room next door. Her mother was with her, and she was being looked after, or so I was told. The girl had come out into the corridor, where there is a table and chairs and a large brown teddy bear. Having imparted this information, the nurse then left with all her usual and admirable cheerfulness, as if I had instead rung to ask the name of a capital city for a quiz, and that she had been able to supply me with this detail. I think there’s too much death in this place and not enough death everywhere else. Death is too commonplace here for grief to fully open its wings. There’s too much equipment, too many walls, too many trolleys carrying cake and pills and mashed potato. A little girl sobs in the corridor for her father, and it’s just a function of what happens here.
A few minutes later and I heard the sobbing again. Whoever this girl was, she didn’t seem entirely happy with what was coming out; or perhaps she was worried that the terrible violence of her tears might be considered naughty and was trying to catch them in both hands and stuff them back inside. The anatomy of crying is so much clearer in audio alone and these tears sounded like they were connected to a new chrome pump that was powerful but squeaking with its newness. It was clearly the first time this particular pump had been properly put to use.
And the worry surfaced – or a kind of panic, which had been there from the start – that this wasn’t a seven-year-old girl; that it was Tom; that it had been Tom all along, crying outside my door.
I came here after the feeding tube was inserted because I’m now too immobile for our temporary home. I’m waiting for work to finish at the bungalow, and I’ll be back with Gill and Tom and Jimmy. There’s a little strip of glass on my bedroom door that people push their noses to: nurses and doctors and cooks and the volunteers who bring the tea. And I’m ‘ducky’ and ‘luv’ and ‘honey’ and even ‘sweetheart’. My pillows are turned, my wee bottle emptied, my feeding tube flushed through with water. This is it. This is all of it. And learning new skills, like how to pee upwards or that it’s actually possible to drink hot tea through a straw. It makes me wonder if what I’m experiencing isn’t dying at all, but some kind of procedure.
In some other cultures it’s not uncommon for paid mourners to be present at a funera
l, or for the guest list to be stretched so that distant connections with an overt talent for grief can be encouraged to attend. That’s what’s missing; that’s who should be present here: those capable of flapping their long dangly sleeves and gnashing their teeth; wailing and beating their chests, as they stick a thermometer under an armpit or fold the hospital corners on a bed.
And then it would be possible, or normal even – something embraced and understood – to be a seven-year-old girl in a corridor, really crying for the loss of her father.
*
There’s a moment when putting any bunch of flowers in a vase and one of the stems breaks, and it’s propped up in the bunch as if nothing much is wrong. My neck started weakening a couple of months ago and only from this experience I’ve realized how central it has been to a lot of my life. It’s not something I would ever have considered but I can see, from being a pain in the neck or just having a millstone around it, that the central importance of necks is widely understood. Otherwise, I wouldn’t be able to risk my neck, or stick my neck out even further, before catching it in the neck for having such a brass neck.
There is something floppy, like a rag doll, in the way my neck supports my head. And the way I move and hold myself is dependent on angles, otherwise my head flops forwards or backwards or side to side, and someone has to lift it back up, like they are on the beach, balancing two pebbles on top of each other.