Tuesday 26 September 2017

'I would make deals with the devil for just a minute lying beside her' - Ciara O'Connor on the grief of losing her beloved mum

When they discovered the incurable cancer in her mother's brain, Ciara O'Connor thought that her life was over, too. This Mother's Day, 17 months after her mother's death, she looks back on the years of illness and remembers the woman for whom she still grieves

Ciara on her 21st birthday with her mum
Ciara on her 21st birthday with her mum
Ciara O'Connor.
Ciara in the room where she helped nurse her mother Sandra - and the couch where she would lie while spending time with her

Ciara O'Connor

When I was 20, I thought my life had fallen apart, because I got ill, had to leave university early and go home.

It was my mother who minded me for the next three years and dragged me through the slow process of recovery and rehabilitation. I was a child again. She fed me, drove me around to doctors and physios, did my chores. We spent almost every day together, both of us at home: a curious symbiotic existence, punctuated by my father, brothers, boyfriend. But always during the day, every day, the two of us.

'We were not ready to let my mother die' - Ciara, centre, with her mum and dad
'We were not ready to let my mother die' - Ciara, centre, with her mum and dad

After three years, I was able to walk again and look after myself; I was almost normal. I was ready to start dealing with a new set of problems. Life had been passing me by: my friends had gone travelling, were all living in house-shares, and had started jobs. Meanwhile, I had been under house arrest with my mother.

Soon I would be profoundly grateful for that time, because shortly after I was back on my feet, on November 11, 2013, we would discover the enormous tumour on her brain. Soon, my life really would fall apart. Shortly, there would come more emergency surgeries, comas, infection after relentless infection, and punishing treatments. I'm not sure at what point I realised this, but she, we, would never be the same again. The coming years would provide the mirror image of the years before: still we two, barricaded at home, lives on hold, but now it would be me looking after her. We didn't know it then, but the heavy, confused steps she took before collapsing, vomiting, into a wheelchair in the hospital lobby that very first day, were the last steps she would ever take. Two years later, she would be dead.

I worry about taking these memories out too often, as if handling them runs the risk of eroding or diluting them, or dropping them and being unable to piece them back together again. Sometimes I am worried that by remembering, I will forget.

When people who didn't know her ask what she was like, usually all I can come up with is "she was a mother". She was one of those people who was a mother before she had children. Rightly or wrongly, her world revolved around us. She did not spend her time hand-sewing costumes for school plays or baking elaborate birthday cakes, but she had endless patience; a special coat made of duvet for spending weekends on freezing rugby sidelines. If you had asked her, she would have told you that she hadn't finished bringing me and my two brothers up. Her work wasn't done yet. We were not ready for my mother to die.

It was not like other cancer deaths. She did not, could not, say her goodbyes, tie up loose ends, say what she wanted to say, work on ticking off her bucket list. Although I said goodbye to her, I'm not sure that she got to say goodbye to me, or any of us.

Brain cancer, it turns out, does not fit into the 'cancer narrative' that we have become so familiar with from films and magazines and fundraising campaigns. It is a mix of the physical catastrophe of cancer, alongside dementia or brain damage. The tumour took away her personhood. She became a child, with all the confusion that goes with it. Time was muddled, language failed. I'm not sure that she really understood what was happening to her. Sometimes I would glimpse her through the cancer - a phrase here, a look there, which meant I never forgot that she was still my mother.

Ciara's mother Sandra enjoying a cappuccino - her favourite drink
Ciara's mother Sandra enjoying a cappuccino - her favourite drink

Our home also morphed before our eyes. The hospital bed, a clunky eyesore in our living room downstairs, became the new centre of our home - there was the ugly utilitarian equipment and the supplies that multiplied week by week: hoists, wheelchairs, commodes, piles of white linen that seemed to grow like a tumour in the house my mother had so carefully chosen and decorated.

"Thank goodness," people would tell me, "that at least you have this time with her - time to say goodbye." Of course, these are the same people who would say that when it's their time to go, they would like it to be quiet, dignified, in their sleep. No protracted illnesses or loss of agency. This was not, I think, a good death. It is tempting and human to try to find the light in these dark situations, but I have discovered that it can be more depressing. Sometimes, there is no silver lining.

Then there were the people who said, "Wouldn't you hate to be like that? I would hate it." The unspoken question being, of course, 'Why have you kept her alive?'

I was told repeatedly to "enjoy every minute" and "make the most of this time, it is precious". They were right. I knew there would be a time, not too far away, when I would make deals with the devil for just a minute lying beside her. But many evenings, it was too painful even to do that: I would be overcome by the briefness of it all, the unfairness, the conviction that this is not my mother; that I couldn't even look at her, and I hated myself.

Today, 17 months after she went, I can remember her like this: my mother Sandra was excellent at parking really big Jeeps. She went walking with her friends every Wednesday, but sometimes she'd skip that part, and just go for the coffee afterwards. She did not particularly enjoy cooking, but cooked every night for 30 years. She made a lovely shepherd's pie the day after a roast. She typed all her correspondence in Comic Sans MS, and I told her it made her look stupid, and she said she didn't care, she liked it. She had a uniform of blue jeans and white T-shirts: she hated shopping. I liked shopping for her. When the two of us were out and stopped for coffee, she would refuse to get her own panini, and so we shared one. It drove me mad, even though she always gave me the bigger portion. She rarely cursed, and was forever mystified and exasperated by my filthy mouth. Sometimes when she was downstairs alone I would hear something smash and then, "Shit". I liked that. We would go out for dinner and order a bottle of wine and she would have a glass and I would have the rest, and she would drive us home. She stubbornly wore worn shorts throughout rainy, windy Derrynane Augusts, because it was summer. She liked a brandy and ginger, Gary Barlow and eating her breakfast wearing a dressing gown on her patio in Kerry.

I had known that she was dying for a long time but that, it turns out, did not prepare me for the morning of October 17, 2015, when she finally did. The Macmillan (palliative care) nurse had said the morning before that we had "a few days", and I was furious that she was wrong, as if an extra 24 or 48 hours would have made all the difference to my readiness and grief.

Ciara in the room where she helped nurse her mother Sandra - and the couch where she would lie while spending time with her
Ciara in the room where she helped nurse her mother Sandra - and the couch where she would lie while spending time with her

I can't remember the things I whispered to her that night. I say I didn't know she was dying but I must have, because, for the first time, I stayed up with her through the night; for the first time, I dragged the other bed over to hers so I could lie next to her. For the first time, I didn't dare close my eyes. I woke my dad up at 5am so he could take my place. We must have known that it was hours, not days.

Since then, I have learned that when I'm feeling OK, I can sit and think myself back into the depths of grief within a few minutes. I have learnt that it's much harder to get back out again.

I have learnt that some people can't handle grief; others get off on it. People who have lost someone seem to recognise each other - we gravitate towards one another.

The sight of a beautiful sunset can make me feel the most soaring joy, or the kind of sadness that makes me wonder whether I'll ever be happy again.

I learnt that much of grief is fury: I would appraise other women my mother's age on the train and try to ascertain whether or not they deserved to be alive more than she did.

I learnt that there is no neat progression through the five stages of grief. You may ricochet from denial to depression to bargaining, and just when you think you're about to hit acceptance, you're right back, mired in denial. Grief is universal, but it is also deeply individual and sometimes cruelly bespoke.

I've learnt there are some things literally only a mother cares about: a coat dilemma in the morning; a very rude lady in the shop; an overheard Cork accent; new marmalade. I had a cappuccino she would have loved - they shaved a chocolate flake over the top. I stared and stared at it, thinking how happy it would make her, how much more she would enjoy the second cup, which would be half price. I couldn't understand that I couldn't text her and tell her about it. I sent a few other people a picture of the coffee; no one replied.

I've learnt it's not the obvious 'firsts' that get you - the birthdays, Christmasses. Those you see coming; you brace yourself. It's the firsts that catch you off-guard - a trip back to a coffee shop you used to go to together; the first time you see the sea; the first time you have a flu and there's no mother's sympathy. It's having to hoover and clean a house where no one has been in three years since you were all there together, and realising you are hoovering up bits of her - tiny flakes of skin, a strand of hair, some slim crescents of fingernail perhaps, and that there will be no more of it, ever again. It's the first time you try to make gravy, and you can't, not properly, because that was always her job.

I have found old people and babies excruciating to be around. Not any old person - the sort of old that means you've kind of checked out of life. The staring into the middle distance with a vague smile on your face; the hearing but not listening. The there-but-not-thereness.

A woman in a wheelchair in Dunnes sent me into an utter downward spiral. Her partner was pushing her and they had four or five granddaughters running around them, hyper. "Nana's buying you all this, girls." Nana had a pile of clothes on her lap; Nana was being pushed towards the till; Nana didn't know what was going on. It was something about her expression, about the left side of her lip slightly drooping, her unfocused eyes, her flopping and swollen hands, the determination of everyone around her to ignore all this. It was too familiar. I managed to pay for my things and ran to the car and sobbed and sobbed. I checked the mirror afterwards to make myself presentable for my grandparents. The indent of the steering wheel was on my forehead and tiny delicate capillaries had burst around my eyes and I looked like a different person - I remember looking at myself and thinking that this was me, this is me, really. I don't think I think that any more.

Around Mother's Day last year, five months after she died, I was sitting in an old friend's car. His father had died a couple of years before - cancer, of course - back when I was invincible. We were parked looking out onto the expanse of Sandymount Strand, where the day before I had walked a couple of kilometres out in a straight line when the tide was turning. I was howling snottily into his collar; I was desperate. "Help me," I said. "How do you do it, how does it become bearable?" The answer came, "It just does."

At the time, that didn't feel enough. I wanted a step-by-step guide. Happiness is a big business now; workshops, books, seminars tell us how to be happy. If you're not happy, it's because you're not trying hard enough. I felt sure I was doing something wrong; that to be in that much pain was inhuman - impossible.

To let go of that, and to see it as something outside of me, an 'it' - to simply wait, was liberating. To understand that starting my day with lemon water and positive affirmations wasn't going to heal the gaping, pulsating wound in my life. How does life go on? It just does. We eat; we sleep; we wake; we heal. A scar is left behind, insistent and liable to reopen if you're not careful.

On the New Year's Eve just past, 14 months after my mother's death, I was walking along Derrynane beach in Kerry. It would have been sunset time, but because the day was so overcast, it was simply a darkening; none of the reds and pinks and oranges of other evenings. I haven't seen the beach like that for a while, grey like a mirror - there wasn't a sinner around. I saw Mum emerge from the fog in the distance; she was walking right towards me, all on her own. I squinted at her for a long time, checking off her hair, her jeans, her favourite red scarf, her jacket, her height, her gait. It was a funny thing; I knew that it couldn't possibly be her, but at the same time, there she was - indisputably walking right towards me in the half-light and the mist.

I spent a full 30 seconds like this as she became bigger and bigger. It wasn't until she was right beside me and nodded hello that I saw, of course, it was, in fact, a stranger. I moonwalked on with big, deliberate, slow steps. A friend caught up with me: "You're going to think I'm mad, but that woman looked just like your mum from a distance". I laughed. It wasn't until a few minutes later when I started crying and couldn't stop that I realised I really, really did believe it was her. I remember thinking that I was a broken thing that could not be fixed. I cried and cried, and, when I looked up again, it was dark.

The next morning, January 1, I woke up late and hung-over. I pulled down the blind and opened the window a crack. The exact position of the blind and the open skylight created two pinholes on either side of the window. I found myself inside an accidental camera obscura. For two hours, I lay and watched the clouds move across the perfectly replicated sky-blue of the white walls. Branches of trees swayed, upside down, above my head, in my bedroom. I could see the inverted coastline. My favourite place in the world and the place where my mother was happiest was lit up all around my bed, projected onto my body, on the first morning of a new year. I wept for the second time in as many days: it was the best, most magical thing I've ever experienced.

I do not believe that my mother is 'watching over me' or 'with me' somehow. I know that she is dead. But that morning, I believed that good things could happen. For the first time in a long time, I understood how some people believe in God. The world is cruel, but it can also be kind. It felt like an apology. Life goes on - it just does.

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