Five years ago today I was standing in a hospital room, waiting for  my mother to die. For the last few hours of her life I couldn’t bear to be in the same room as her. It felt as if were watching her essence,  her being, seep away, leaving a maimed shell.

Today isn’t the close of a chapter, less the end of the story. Grief  is a constant presence in my life. What exactly it is I can’t pinpoint.  Somehow it structures my awareness. For all those thoughts and insights I  hold dearly – those I’m carefully noting down here – there are hundreds  of fleeting and lost thoughts that piqued me at one time or another.  Moments of clarity now lost, somehow imprinted, like handwriting  drenched in water. I suppose they live with me still, shaping my current  form.

I’m writing this because the world of grief is quiet and lonely. ‘It  will get easier’, so the familiar refrain goes. We go on grieving, years  later, in a world that thinks that we have got better. Time can make us  lonelier. I don’t feel I have anything like lessons to pass on here,  but I want to write having often felt stifled by etiquette and  convention. And I want to keep my mother, Marianne, alive.

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To know that people can die and to live through it are different  things. No amount of imagining can prepare you for its particularities,  and I had done plenty of imagining. My mother was diagnosed with cancer  when I was eleven and from then on her death was often the subject of my  thoughts. When she died, the superstitious mind in me couldn’t help but  wonder if all that imagining had brought it about, as if I had  inadvertently wished it by thinking about it so much.

This is a paradox because in the months before her death I didn’t  really think about it as an immediate possibility any more than I had  during the previous seven years. I had become used to my mother as  someone with cancer. In fact she’d had cancer – a melanoma – before I  was born. The smooth scar that stretched the freckles on her right arm  was the first mark cancer left on her body that I came to know. I  remember running my finger along it as a child, feeling the soft indent.  It would be followed by a long scar straight down her abdomen, the mark  of the operation she had to remove the next cancer. Her bald head came  later, which she made strenuous efforts to hide from me under colourful  scarves she wrapped around her head. In my mind she would go on having  cancer in this way forever, and she would continue to be someone who could die, in the future.

When she did die, seven years after the oncology unit first entered  our lives, it was truly shocking. There was one week – exactly Wednesday  to Wednesday – between the day I realised she was definitely going to  die and when she died. I’m glad it wasn’t longer that I knew, in truth. I  found those days completely beyond my emotional endurance. Soon I was  willing her to die faster so I didn’t have to watch. I knew most of the  conversations we wanted to have would go eternally un-had, washed down  the drain of time, which made the weight of those we had even greater.  Having them or not was equally agonising. And part of me wanted to be  free to grieve rather than to mourn someone still living.

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The first year I had no embarrassment or politeness about my grief. I  could see it only from within, and it structured my world. ‘My Mum  died,’ I would drop heavy-handedly into conversations. Seeing people  flinch somehow validated my sadness. I was so bound up as a griever at  that time that I hadn’t yet been able to meditate it from the outside.

Nowadays I have a little more awkwardness about it. It’s not that I  don’t want to tell, but by now I’ve been through hundreds of explanatory  conversations that I find tedious to rehash. I’ve also learned  embarrassment, and hate being the one to change the tone of a  conversation. I’m faced with how to present her death, how to sanitise  it for the uninitiated. ‘She passed away’ is a phrase whose indirectness  I’ve always hated but find myself using more and more, to soften it for  others. ‘She died’ is gentler than ‘she’s dead’, although the latter is  the one that feels most truthful. It speaks of the violence wrought by  her cancer.

‘Parents’ is the word I most fear cropping up in conversation, as in  ‘what do your parents do?’ or ‘where do your parents live?’ I have only  one half of that pair, which undermines the unit. If I answer  truthfully, and say ‘my father lives in Gloucestershire’, the next  question is, ‘and your mother?’

And then I can’t help but imagine where she lives. She’s nowhere. On  the breeze, on our breath. Does speaking of her give her realness? Her  ashes blew away long ago and she has no grave. Somewhere in my mind,  maybe.

Grief has also forced me to confront the problem of why things like  this happen. I have found most accounts of why she died of little  comfort and sometimes frustrating. For me there has always been more  relief in the notion that her death meant nothing, it wasn’t part of a  plan and there was nothing that could have prevented it. It wasn’t just  the fact of her death that made me feel this way but the unfairness of  her suffering. It was cruel and callous, needlessly drawn out. The idea  that this meant anything was, and still is, horrifying to me. That there  was anything that could have prevented or diminished her suffering, but  didn’t, is awful. But I don’t see any sense in preaching. Grief is hard  enough without having others intrude with explanations that don’t speak  to our own experiences. How we make sense of death structures our  orientation to the world. It is one of the most intrinsic and personal  parts of who we are.

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Her spirit was remarkable, reminding us to the end that in the sweep  of human history we truly are the lucky ones. Of course like us she was  bitterly angry about being stolen away so early, but was adamant that  she didn’t want to think about the nothingness of death until the time  came. She wanted to remain firmly rooted in the world of the living  until the very last. No priests, no dark discussions. It was her and us  and the soft April breeze until the end.

The thought that during her dying days she was mourning us – all of  us and the entire contents of the world – didn’t occur to me for several  years. She was about to lose both me and Dad, and everyone she knew,  while we were struggling to cope with the immensity of her singular  death. How she dealt with these impending deaths as she lay staring out  at the moonlit hills each night I don’t know. Maybe I don’t need to put  myself through such thoughts, but I feel compelled to retrospectively so  she’s not alone on those nights.

Time has a weird plasticity. ‘It will get easier’ is something I  still grapple with. In the first days it was meaningless – she hadn’t  really gone. Frozen meals she’d cooked were still in the freezer, notes  left to herself dotted around the house. But I’m certain it gets harder  before it gets easier. There was a period of realisation during which  the full effects of the death sank in. I can remember the worst day,  about two months after she died, when it felt like it fully dawned upon  me and all at once I was feeling every face of the pain and the  emptiness. But it’s not straight upwards from there, either. I can still  revisit it with the fresh intensity of those early days, if I let  myself, because the loss is no less than it was then. I don’t think this  is necessarily a harmful thing – I need to keep her part of my life,  and that means being able to feel the pain sometimes.

Five years is enough time for me to have changed and developed quite  considerably as a person. It can feel like I’m being dragged away from  her while she’s stuck forever at the time she died. In the early days  there was comfort in knowing what she would say, but I am different now  and have a more intricate understanding of life. I know less and less  what she would say. As I evolve, the mechanisms I had developed and the  things I told myself in the early days cease to be adequate, just as our  views on life, suffering, politics and so on change endlessly from our  early adulthood. In this sense there is new grief-labour to be done as  time goes on, and there will be more in the years to come. But this is  no different from the self-evaluation and -reflection we all undertake.  For me, my grief will never be fully extricable from that.

So feeling ‘better’ about her death is not straightforward. There can  be a sense of failure and guilt if grief resurfaces, like a relapse,  which is awful in itself. But it’s all part of understanding the world.  Grief is not a linear process.

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She was so perfect as a mother. Never angry, never pushy, always  seeking to convey the beguiling complexity and unfairness of the world. I  know death has a tendency to kindle unfounded reverence – memory’s  poetic licence, as Tennessee Williams put it – but I spent years  mourning her while she was still alive and I can attest to the wonder of  her curiosity and empathy. I know I was lucky by birth – perhaps doubly  lucky to have her all to myself, and as such to count her as a friend  as well as a mother – but now I know that all the more intensely.

I was 18 when she died, weeks away from taking my A Levels and  leaving home. I feel in some ways we were fortunate for this. She was  able to know my first glimmers of adulthood, and I was adult enough to  be able to thank her. But I lost the opportunity to return the  stimulation and encouragement she’d given me. I lost the one person  whose personality is interwoven with my own, and sometimes I feel that I  have only my memory to understand parts of myself. And of course  there’s the simplest but deepest loss – company.

At the back of a cupboard I recently found the box that contains all  the letters we received after she died. I was struck first by its  weight, so took it to the bathroom and put it on the scales. It weighed  4.2 kilos. As I read, card by card, I’m plunged back into the world of  those first few weeks. It’s an intense re-living, back to the time when  it felt like the whole world pivoted on her death, that time would just  run out at some point and we’d all fade away in her absence.

The cards are filled with anecdotes and attest repeatedly to the  richness of her personality, her generosity of spirit, her practicality,  her love of colour. I’m taken back to the time when grief-labour was a  fulltime occupation, and time doesn’t feel straight again.

The last card says simply, ‘we don’t say anything because we don’t have the words’.