Learning how to Breathe

by Neil, Linda;

  We can go as friends, as lovers, as husband and wife, he continues. It doesn’t matter. We could go to Vietnam. There are mountains there that can apparently take your breath away.

  He puts on his sunglasses then; they make him look like some kind of celebrity guru, waiting for the light in the light, I joke to myself, while he waits for an answer from me, as he seems to have been waiting ever since we met.

  What if something happens while I’m up a mountain somewhere? I ask then, noticing, as I speak, the helplessness in my voice. And no one can contact me. What if she falls again? I continue, scuffing my right foot lightly across the ground, not wanting to speak much more and draw attention to how obsessed I sound, how obsessed I am. And I cannot see her because I am enjoying the beautiful view?

  They can call you on my mobile, he laughs. They can email. They can find you. There is always a way to get in touch. But you’re worn out. You need to have a break.

  He huddles around me then, not pressing in too hard, almost as if he senses my fragility at that moment. It feels old-fashioned somehow, the way he places his arm around my shoulder, one of those gestures from men I used to hate so much, as if by receiving such concern I might become too vulnerable and less able to survive on my own. These days I am better at receiving, but still I know, just as Byron knows, that I am not ready for what he is offering me.

  I know you can’t answer me now, he continues, letting me off the hook. But think about it … and let me know sometime … when you’re ready, what you’re feeling.

  I nod, unable to say anything. Unable to give him back what he wants – or needs – from me. He doesn’t press me anymore; he just smiles, bows, turns and heads off to the car park. I watch him walk away and I hold close to the thought that it will not be for the last time. That life can come and go too, that there will be something – or someone – up ahead for me, waiting, when my time with Mum is over.

  A week later Mum is lying motionless on a bed in St Agatha’s Hospital. The sign above her bed says NIL BY MOUTH. Her neurologist had considered the lump on her forehead sustained through her fall serious enough to warrant urgent scans. These reveal no bleeding in the brain, but several cracked ribs. At the time she is admitted I come down with a virulent flu and take to my bed as well. Like Mum, I do not open my eyes or speak. Two days later, on my birthday, I take flowers to Mum’s ward. I sit beside her bed and talk to her, say sorry to her, cry for her. It doesn’t matter that she doesn’t answer. If she did she might just tell me, as she so often did during my life, to ‘pull your head in and stop taking everything so seriously’. It turns out she has not opened her eyes or orally taken in food or medicine for over seventy-two hours and that this time, perhaps, she may have given up. Decided to stop breathing, once and for all. I ask her nurse if this is what usually happens when people are about to die.

  Sometimes, she answers, adjusting Mum’s pillows. Often they just stop like your mum has. Usually they wait for permission from the family.

  She peers at me closely while she speaks, watching for my reaction. She seems sensitive, used to dealing with death. I imagine her delivering these facts to other families waiting for a parent to die. She speaks softly, yet her words are firm. You can’t argue with death, I think. Or with people who have decided to die. Best to just let them go.

  But then again if we can rehydrate her, she continues, the muscles might start working again and she can take in food. Otherwise we might have to get the family’s permission to put a tube in her stomach and get food to her that way.

  What if she really doesn’t want to? I ask, more out of curiosity than anything else.

  She bends down to find a lever and skilfully adjusts the height of the bed until Mum is lying all the way back down. That’s a decision for the whole family, she says.

  Cathie: I can vividly recall the Sunday in late 2004 when Paul called me and told me that St Agatha’s wanted us to make a decision about life support if the need arose. That afternoon I had to go and accompany a number of my senior students in their final recital. One of the boys was singing ‘Going Home’ by Copeland and Britten. I don’t think I have ever played with such intense feelings about the text and music of a song. I had to fly down to Brisbane the next day so you can imagine what I felt a lot that day about this song called ‘Going Home’. Going Home. You understand sometimes exactly what those words mean.

  The available family – Cathie, Paul and I – gathers in a conference room at the hospital, along with Mum’s psychiatrist, occupational therapist, physiotherapist, and a nurse called Jenny. We discuss Mum’s declining health and the possibility of Stephen coming up from Melbourne to care for her full-time. Both Paul and Cathie refer to him as a ‘special person’ and by the end of the meeting, the occupational therapist does as well.

  We are presented with statistics: at night now, Mum must be turned every two hours. Two nurses are required to move her from bed to chair to shower and back again. The physiotherapist tells us Mum’s toes have curled inwards and are now rigid. She is hardly able to pivot on her feet, can only stand on ‘her tippy toes’ and is not ever expected to regain mobility, a euphemistic phrase for never being able to walk again. She will eat mashed and vitamised food for the rest of her life; water will never again pass between her lips, to protect her lungs from flooding and developing a pneumonia that might kill her. We are informed that her delirium is being caused by the severe dementia associated with the ‘aggressive’ Parkinson’s she suffers from, as well as the urinary tract infection which she has contracted from the catheter that has been removing waste from her body for the last month.

  Everyone sounds reasonable. I feel lulled by their smooth tone, nod my head in tandem with my brother and sister. The doctor, whom Mum also once called the ‘handsome one’, has a baby face and a peaceful demeanour. I notice my sister likes the doctor and that she wants to be liked by him. My brother exercises that easy banter which men of professional standing exchange with each other. I can’t imagine either risking an altercation with each other or asking a question which might be considered offensive.

  Sometimes there is such a thing as a tonal imperative: if the resonance in the room was musical, it would come, perhaps, from a septet by Haydn, or if it was a song, perhaps it would be a perfectly arranged pop song. Everyone’s part is ordered, note perfect, even mine; despite my head being filled with atonal lines of my own devising, out loud I don’t make a false note.

  I ask only one question. It is a question I suspect no one wants to ask, but one that everyone would like answered: How long do you think it will be before Mum dies?

  My voice is not like my mother’s. It is more unschooled than hers. I will never earn a fellowship or a doctorate with my voice. Not like Mum did. Her voice developed in a cultural context; unlike my voice it knew the rules. It sang in a home, in the kitchen, practised in the lounge room, it performed with babies at its feet. It learnt from other well-qualified singers, it existed inside a framework. It scored As, Bs and Cs in exams. There are pieces of paper hanging in frames that attest to the sophistication of my mother’s voice. It practised its scales, learnt to project, developed a resonance. My mother’s voice was all body, was all her body, it filled every empty space; such a voice can stop another voice, like a pretty mother can stop a plain daughter from unveiling her unique beauty and showing it to the world.

  You must sing your songs, an African woman once told me in a shop called Saraswati on Campbell Parade opposite Bondi Beach where I played a gig so I could earn enough money to eat for the next twenty-four hours. You have been put onto this earth to sing about the sadness of women.

  Now, in the hospital, no one wants to answer my question. As my sister sobs quietly, the baby-faced doctor thinks for a while before answering that he cannot answer my question. My brother closes his notebook decisively at the end of the meeting and says Mmm. I rub my sister’s back. We walk together down the corridor to s
ay goodbye to Mum. I feel briefly comforted, glad to be walking with my family, wishing for a moment that I could happily walk with them again, wishing for a smaller moment that I could forget all that I knew so I could be fully and peacefully included in the circle that is gathering and forming itself as my sisters and brothers return from other parts of the world in order to keep vigil over our mother. I wish that I hadn’t been such a rebel, such a fighter, wish I had not questioned and probed so much; wish I had been able to be sweet and amenable, as my mother might have wanted me to be. Because I understand now that, for Mum, recovering from her illness, or being right, or having to know, or understanding herself or the life that has brought her to this point, was not as important to her – and never would be – as her kids getting along.

  We gather around Mum’s bed. Cathie is smiling again as she strokes Mum’s hand and tells her she has sent a bottle of scotch down to Melbourne for Stephen’s birthday. Paul looks distracted and tired. I think about what it has been like for him: devoted, as my father had been, to his young family, while pulled back always to the needs of Mum and his other family. On call to both of them. And, despite his sorrow and his stress, still smiling. But he is edgy and anxious to leave; he wants to miss the peak-hour traffic and he has errands to do before he can go home.

  That night I dream I see Mum at the end of a white corridor like the one I walked down at the hospital. She’s wearing a long white dress and is lifting off the ground. As she levitates in the air I hold on to her ankles. I watch myself holding on to her. I know, despite all the words I have said about letting go, that I am not letting go of her. That I am pulling on her as perhaps I always have done, dragging her down from her ascent with my need of her. I’ve never believed in angels, not actual ones, and I don’t hear a heavenly choir as I dream. But I see what perhaps my mother sees as she reaches down to pry my fingers from her ankles: that holding on is useless. That letting go would be like a giant sigh, a final exhalation of pain and suffering, like throwing ballast off a hot air balloon so that it can float heavenwards.

  You don’t need to fight anymore, Mum tells me. You only need to love.

  THE VIEW FROM HERE

  Some people didn’t really like the way Mum spoke in a radio documentary I made about her in 2003 in which I used the interviews I recorded while she was still able to speak coherently.

  I wish you could have been a bit more positive, they told her. I understood what they meant. To the outsider, still living in the mainstream of life, a tragic voice is an affront. People on the go, people who work and toil, need uplifting and Mum could offer nothing of that anymore. On the other hand, I had lived with her illness and her voice for so long that I was used to its faltering pace and sense of fragile wonder and loss.

  After the documentary was broadcast I received letters from people thanking Joan for telling her story. It was hard for her to listen when she herself first heard it. She did not like to hear her voice so weak and uncertain.

  Will anyone really be interested in listening to this? she asked me. This sad old woman? Then she cried and said: This is a beautiful thing that you have done for me.

  I called the documentary ‘The Asylum Seekers’, because I often feel that illness makes us like refugees looking for shelter as we travel long distances away from our home. When it won a gold medal at the New York Radio Festival I told her that it seemed there were people who were interested after all.

  ‘What would happen if all the members of my family disappeared?’ the writer Maurice Halbwachs asks. ‘I would maintain for some time the habit of attributing a meaning to their first names.’

  Today my mother is one of the disappeared. As a way of finding her again – or finding her for the first time – I have attributed meaning to more than just her first or last name, although for a while I became interested in finding out the meaning of both these things. I have tried, at various times, to find meaning in her illness, in her life and the collective life of my family. Mum herself never felt there was any meaning to her illness. She did not transcend it; she did not manage to find hope in the middle of her suffering. In the middle of her suffering was just more suffering. Sometimes I feel that all I have left is her voice, the memory of it, the hours of recordings, the traces of it in my voice. In all these ways, I have tried to hear her voice again – not just the voice she sang with, but the voice she used later when she could not sing anymore.

  Trauma, psychoanalysts say, has a timeless quality to it. Which is to say, I suppose, that it does not pass away with time. It remains as fresh as when it was first felt. But Mum, thankfully, doesn’t feel her trauma anymore. Nor, I imagine, does she grieve. Her life is simple these days. She lives with Stephen in a house that Cathie and Paul own at Brighton, the suburb next to Sandgate where Paul and his family live. Stephen, who left behind his life in Melbourne in November 2004 to move up to Brisbane, cares for her full-time. He goes about his days with a quiet dignity that has enabled my mother’s life and her dying to also be both quiet and dignified. Her body never recovered from its last shutdown and progressively over the past four years it has stiffened to the point where each day there are only tiny windows of movement and life when she is roused from her vegetative state. During these gaps in her rigidity Stephen lifts her from her bed and wheels her out to the toilet. After she is finished in the toilet she is then wheeled to the lounge room, or, if it is fine weather, outside onto the veranda, or down the ramp to the back yard, where he hand-feeds her mashed-up food. The rest of the time she lies rigid yet peaceful in her air-conditioned room – cool in summer, warm in winter – in which the radio is always turned on low to ABC Classic FM.

  And so it is left, as it usually is, to the survivors to do the grieving. To feel and feel again the trauma of the disappearing. To write the names of the disappeared over and over.

  Cathie: When Stephen made the decision to leave his life in Melbourne to take on full-time care of Mum, there was some resistance from the medicos involved to us taking her out of hospital where she was dying. After a number of meetings, finally they agreed. The point that was made to us by the doctors and nurses was that no one would be able to look after someone in Mum’s condition at home, virtually on their own. But Paul made a salient point that I feel surprised had not been considered before: ‘This is what always used to happen only a few decades ago,’ he told the doctors. ‘Most of the elderly and infirm were cared for at home. Why do you think it’s such an impossible thing to do?’ I think the crux of the discussion was that today people would have to give up income and this was not a common experience. I thought this was very sad. Perhaps materialism and the pursuit of personal happiness through wealth and power have made us mean.

  When Stephen arrives from Melbourne to look after Mum I can tell everyone in the family is relieved. He has been involved in Mum’s declining health over the past few years from a distance – through phone calls and letters – and up close through his regular visits. By coming north now he brings fresh energy, as well as his strong, healthy body, to soothe the family – and Mum – from their distress. I feel sorry that I am too tired to be as gracious as he is, or to hear the praise he receives for coming to Mum’s – and the family’s – rescue.

  Sensing my bruised emotions, my friends rally around me, but I know I should only feel happy for Mum, for all of us, that we don’t have to worry about our mother being properly cared for anymore. I feel spent, though, as if I have outlived my usefulness, just as it often seemed to me during the past few years that Mum had outlived hers too.

  I feel tired in my bones as I prepare to journey across to India where I plan to live for the first four months of 2005 as part of a writer’s residency in New Delhi. My good fortune has not come out of the blue. While I have been in Brisbane I have developed as a writer as well as a songwriter and now I am rewarded with opportunities such as these.

  Byron is sorry to see me go and feels aggrieved that I can lea
ve the country with so much unresolved between us, but my desire for change and relief is ruthless and I depart in the middle of November 2004. This month also marks the beginning of the period during which Stephen looks after Mum full-time and, in effect, keeps her alive when all of us, after the NIL by MOUTH episode in hospital, expect her to die.

  The purpose of my residency in New Delhi is to write about India, but everywhere in this wild and vibrant and overwhelming city I see, hear and read images of the mother: ‘Mother India’, ‘Mother’s Milk’, the ‘Mother Ganges’. Overwhelmed and exhausted, I cry nearly every day for the first two months. My tears are welcome: they drain me of my fatigue and restore in me the ability to feel. It doesn’t take long, though, for my body to weary of the pollution and stress in Delhi. I move north to the pilgrim town of Rishikesh, where, close to the source of the ‘Mother Ganges’, I think about how to write about my mother and the things through which we have passed.

  Stephen sends regular updates via email as well as photographs of Mum. I follow her progress anecdotally and through peering at the images on the computer screen. I notice incrementally how her physical state improves during the first few weeks and months of Stephen’s watch. I am happy to see Mum improving and guilty for not being there to help, for not being able to care for her the way Stephen can now.

  She puts on weight and looks better nourished, but she is permanently incapacitated now and spends her time in bed or in a wheelchair. She is still capable of listening to Steve read out the emails I send about my travels. In his brief emails back to me Stephen tells me she listens with interest to them and occasionally says Oh or Mmm.

  The rest of his communications are filled only with details of her medication or the state of her urine. Though I miss Mum, in my secret life I am glad to be where I am, so I can rid myself in private from my guilt and remorse. My body also changes, unwinding every day from the stress of the past five years, unfurling like a newborn in this mad, fecund country.