COMING UP FOR AIR
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 g
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.
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.
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.
WRITTEN AROUND MOTHER’S DAY, 2015:
These are her final weeks, months, days. I am trying to commit every single moment of them to my memory for when she is gone, but I also want to forget. I do not want the woman I remember to be bedbound, confused, incontinent. I want to remember her slim and smiling and beautiful, not bloated and bald. I would like to forget her current inexplicable penchant for bunnies and kissing the stuffed dog good night. I want to remember her fragrant, stylish and bejewelled before a night out. I want her to be the woman making sandwiches for 20 people before heading to the beach in the summer, or sitting at the table with a Sudoku, with her glasses and a frothy, chocolately moustache from a cappuccino — her ‘happy face’ she called it. The idea is that I have a list of ‘ before’ things here, but I can’t think of more, although there must be hundreds. I am sure it won’t always be like this.
I don’t want to remember myself this way either. People tell me nearly every day how wonderful we all are, how strong, how brave. The fact that I have a smile on my face is inspirational and special. I hope that I will eventually believe this version of myself. Memory is a funny thing, so easily manipulated: I see no reason why I could not persuade myself that I was brave, strong and happy, despite it all. I do not want to remember the constant nausea, the evil thoughts about other mothers, the mornings and afternoons spent cocooned in my duvet with my eyes clamped shut, trying desperately to get back to sleep so I don’t have to go downstairs to her and start the day. I hope I forget sometimes not being able to look at her. I hope I forget avoiding talking to her family; my family. I hope I forget resenting their healthy presence in the house. I hope I forget the terrible friend I’ve become and my inertia, paralysis, laziness.
I want to remember these days, and I hope to god I forget them. There are days I spend wandering the streets for hours, or barricading myself in my room, and there are days when I climb into her bed and lie there, breathing her in, until she kicks me out.
At times like this, I wonder how I am still here. I wonder how I have not simply disappeared or melted away, or just been absorbed gently by the earth. How is it possible that I am here and I am watching this happen to my mother? This watching has become normal — or something like it.
We are planets orbiting her; everything comes back to her. What would she like to eat, watch, listen to — these questions are of utmost importance in this house. I