by Neil, Linda;
Mum probably was too busy chopping to notice that the sound of her knife slicing through the vegetables onto the board below created a kind of rhythmic counterpoint to the melody of the classic song she was singing under her breath. Like the chop chop chop of the carrots …
Day and night
You’re always the one.
Five days before Christmas 2003 Mum is admitted to St Agatha’s Hospital near the Brisbane CBD. The hospital has been suggested by Mum’s new neurologist, Dr Goldman, who comes highly recommended as one of the country’s leading experts in Parkinson’s treatment and whose rooms are just down the road, making it easier for him to ‘keep an eye’ on her. Dr Goldman also happens to be ‘a friend of a friend’ and his affable way of communicating encourages a new sense of ease. Mum always gets a new lease of life when she has a new doctor and especially approves of Dr Goldman because, like Dr Silver, he is ‘so handsome’, although as I joke with her, she seems to have a habit of finding all her male doctors good-looking. Dr Goldman also apparently works at the cutting edge of recent developments in Parkinson’s disease, and we are thrilled that Mum has once again the possibility of a fresh start.
After examining her, Dr Goldman is upbeat, but proposes another overhaul of her medication. We are told her stay at St Agatha’s may last for a couple of days or a couple of weeks. I don’t ask for any more specific information. I am better at understanding the euphemistic language of the doctors and can now easily interpret the phrase ‘it’s best for her to go in for further observation’ as ‘we need to fix up her medication again’. I have realised that often no one really knows what is happening and that, just like any other human being, health professionals are often stumbling around in the dark, grasping at solutions to impossible situations.
I’m having a break at the New South Wales’ north coast when Paul rings to tell me that this hospitalisation is to be extended. He is about to leave for holidays with his family and is worried Mum will be alone in hospital with no relatives around to visit. He asks me, just as he did five years earlier, if I can drive north and stay in Brisbane with Mum ‘for a few days’ while her medication is sorted out.
Mum always advised her singing students to keep a practice diary. A diary helps you keep track of your progress, encourages you when your spirits flag; it also reminds you that all major developments occur one tiny step at a time. I was never organised enough, though, when I was younger to do anything as incremental as this. I also had terrible handwriting. But there are times when a practice diary would be really useful. When perspective is gone. When the changes are so overwhelming that days go by in a blur of fatigue. When life speeds up and the balance between outward activity and inner reflection seems completely out-of-whack.
During the final days of 2003 and early 2004 my face begins to resemble the same blank haunted face my mother had when she first experienced fear and anxiety at the beginning of her illness. I don’t know how to rest, though, to unfurl my unwieldy body and mind and heal. Worst of all, I stop singing too.
I begin my own practice diary to record things as they happen. Perhaps not recording things as they happen will make time disappear, along with Mum – and me. Perhaps the diary will help me see – not now, but one day – the bigger picture created by all the tiny moments that now seem to be occurring randomly and often without meaning. Later I will fill out the entries in order to make more sense of this randomness as Mum’s illness progresses. But the diary I make at the time lists dates, times, and transcribes conversations. Exactly what I am practising during these weeks is unclear. The entries are sketchy, patchy and thin. They reflect the halting twilight state of our lives at this time of transition.
19 December 2003: I go up to the fourth floor, full of dread. As a concession to Christmas there are a few bits of gold tinsel decorating the corridor railings. I pass open doors and see people lying immobile on their beds. Everything is grey.
I hear opera when I enter Mum’s room. There is a nurse giving her tablets and Mum is hunched over on the bed. For some reason I notice her feet don’t touch the floor and that she is wearing a nightie I haven’t seen before. She looks tiny and old, like a sad Yoda. The nurse is brusque. I can tell that Mum has been ‘uncooperative’. Tablets I have not seen before are lying on the tray. The atmosphere in the room seems full of tension. I wonder what has gone on before my arrival.
Are these new tablets? I ask.
No, they’re ones she’s always taken, she tells me.
I notice the nurse is defensive. I’m good at that now, making nurses defensive.
According to the chart she’s taken it for a good while before she came here, she concludes.
She goes back to fussing over Mum and ignores me. I don’t blame her. Not really. I’m sick of myself too.
Mum is in the middle of a Parkinson’s freeze and can’t move. She asks me to take her shoes off and put them back on numerous times. Nothing makes her comfortable. She tells me she feels as if a thousand little insects are crawling up and down inside her legs.
21 December: Mum’s hallucinations begin suddenly on the morning of the 20th. The nurses whisper to me that they are symptoms of ‘aggressive dementia’. I notice, though, that they only began with her new medication. The new drugs make her babble like a crazy woman and I feel again, as I have many times during the past few years, that illness has become like a thief in our lives, robbing Mum over and over – of her dignity, security, self-respect and even, sometimes, her sanity.
When Mum tells me she has been sexually attacked by some people who came into her room I tell her it was all a bad dream. Her paranoia is to do with sex and with people trying to control her. She talks about an old man touching her when she was a young girl and says that God is punishing her for being touched ‘down there’ and that her psychiatrist interrogated her on behalf of the Masons, ‘in order to get information’.
It is all crazy stuff, but I converse with her as if what she is saying is all perfectly normal. It seems the best approach. When we return to her room I find there has been a medication change. She is now on a drug for schizophrenia, prescribed to reduce her dreams and ‘psychotic behaviour’. When I research the drug on the Internet I discover that its side-effects are increased hostility, paranoia and feelings of persecution. I don’t feel vindicated. I just feel tired.
Sometimes, Mum talks less like a madwoman and more like a wise woman. Your father was a very thoughtful, tender man who loved me, she suddenly blurts out to me as I am about to leave one night. The church should never have insisted on no contraceptives. That’s what broke your father’s heart. Losing our intimacy like that. Probably gave him the stroke, the bastards!
Her mood shifts as she walks me to the lifts. But the way I looked after your father is the story of our love, she tells me. It was a tender spiritual love. Affectionate, respectful, caring. That’s what’s life all about … reaching that level of love.
She begins to sing as we wait together for the lift.
Love that hovers
over lovers
speaks in song.
I know the song and join in. Other people waiting for the lift turn away, embarrassed.
She stops and says: I sang this song to your father.
I know, Mum, I tell her. I remember.
Sing with me, she says, her eyes glistening. I love it when you sing with me.
And the music answers … she continues, swaying to and fro.
I hum along for a bit, until I remember more words.
Mum stops singing and waits for me to sing the next line. Telling you, it’s true, it’s true, I warble.
Someone giggles. Another voice joins with Mum as she responds, singing … I love you so.
She stops and bows before going on, announcing to the lift which has arrived at our floor holding what might be her final audience: This is my daughter. We’re just singing together.
I get into the lift, turn back and face her as I hold the button down to keep the door open a little longer. The couple next to me join in with Mum and me to sing the final line of the song: I love you so.
There should be an orchestra in the lift. There should be technicolour. A choir of angels. A curtain closing. Rapturous applause. But as the lift doors close, no one claps, not even the couple beside me who sang with us. I imagine Mum walking back to her room, humming as she goes, at the same time forgetting and remembering all the melody of her life, her mind a confusion of love and music.
When Mum’s psychiatrist rings later, I ask him whether it is true that the brain can degenerate over time by taking so many drugs. He avoids directly answering my question and instead philosophises over the phone: You cannot change the past so there’s no point, really, is there, in thinking about it? I wonder if he believes I am the one with the problem.
22 December: Mum is so rigid she has to be lifted out of the bed. Her hands are like claws. For the first time I pray for her to be taken quickly. I don’t want her to suffer any longer than she has to. I hold her hand and stroke her leg. Her limbs are twisted and so stiff that when I lift her onto the bed I have to force her legs downwards.
Talk to me, will you, Linda? I just want you to talk to me. I want to hear your voice. Tell me what is happening to me. Tell me what has happened. I just want to understand.
I don’t know what to say. I’m tired of talking. There seems no point at the moment. Talking seems to have got us nowhere. So, instead of talking, I do what I did when I first returned home five years earlier – I get out my guitar and sing one of my songs. When I sing I am revived. I hope Mum is too. A couple of nurses pop their heads into the room, smile, and walk away.
After a few verses Mum turns slowly towards me and asks: Who taught you that song? Did I teach you that song?
She’s forgotten a lot of things. I don’t mind. I don’t mind at all. No, Mum, I tell her. I made it up myself.
She is crying when she says to me: I’m so proud of you.
I know that with those few words she is acknowledging to me that I have finally found the thing I have searched for; found the thing I never thought I would find by returning to her. I have found my song and I am singing it for her in the hospital surrounded by machines and steel and grey, empty corridors. I understand, too, in ways that probably could never be conveyed verbally between us, that she had drummed her music into me for so many years when I was a child in the hope, perhaps, that I would find in it, as she probably had, a means to discover myself and my own emotional expression. It wasn’t a matter of being famous or some kind of star. Even a practical woman like my mother knew that finding my song had little to do with finding an audience for my song.
She doesn’t want to hear any more after that. She has heard enough, I imagine, to last her a lifetime. Now she just wants silence. She tells me it’s not that she doesn’t like to hear me sing, it’s only that she can’t bear it. I’m not insulted. Some things are unbearable.
She wants to pray, but it’s so long since I’ve said a prayer; I say only half a Hail Mary and let her finish the rest.
‘Don’t keep secrets on stage’, Mum once advised her readers. ‘Let it all hang out.’ Anyone who knew her personally or was taught by her can hear the emphatic way she might have delivered these lines. I sometimes hear my father’s thoughts in my mother’s words. Not that I think she didn’t believe in everything she wrote and thought about singing. Rather, I can see what he passed on to her; what luck it was to have found a man with his love of poetry and words to settle down with her in a Brisbane suburb. I can also read in her words the determination that would have made her find a way to get where she needed to go, even without him. And for him, my mother would have been the singer, not just the song, the physical embodiment of all the dreams that poetry had put into his heart. In return for manifesting his dream, he gave her his strength, his passion, his enthusiasm and, despite his resistance sometimes to her earning money and singing in public, his adoration.
Mum hinted once that Dad didn’t always like her singing on the stage. I try to understand his misgivings, to put myself in his shoes. In those days the stage might have seemed a rough business. To him, perhaps it would have seemed safer for her to sing at home. But Mum was down-to-earth and practical enough to know that you had to do the hard yards, to do the rough menial jobs to make any thought become a reality. That was her gift to him, the knowledge that sometimes you had to step up to the spotlight, open your mouth and sing out, louder and bigger than if you were just whispering softly next to your beloved. She knew how important the body was to her art. She knew that the stage was larger than life. Knew that song, like an act of love, was physical poetry.
‘Draw your audience into yourself’, she wrote. ‘When you are uninhibited and really concentrate on your lyrics and words, your voice will blossom.’
25 December: On Christmas Eve I received an offer of a writer’s residency in New Delhi beginning in November of 2004. It is an opportune Christmas present, the offer of Christmas next year in another country. I can feel our story drawing to a close and wonder whether, unable to finish it myself, forces outside are conspiring to end it for me.
Cathie’s in town for Christmas. Paul, Kym and the boys share lunch at the hospital with Mum, Cathie and me. Friends with gifts and greetings drop in all day to visit, but by the afternoon Mum is tired of Christmas and wants to rest.
As Paul and his family are leaving, Kel sees a picture of Mum taken by Paul in London in 1997. In the photograph she is smiling like a girl while she strolls through a leaf-strewn park.
Do you know who that is? someone asks Kel, who is a gregarious and lively child.
Yes, he answers, his face turning up to us like the sun. That’s Grandma Joan when she was still alive.
28 December: Mum rings and tells me she’s become disfigured in the night. When I arrive she is on the phone. Mum’s relationship with the phone is always a good barometer of how she is feeling. When she is depressed she hardly speaks at all; when she is anxious and wound up she can’t stop talking. I play her a couple of songs to calm her down; she tells me to stop because my voice is too shrill.
She tells me later that she did not want me to sing because it made her so sad. I crossed my hands on my chest with my rosary beads, she whispers to me, and I was just lying there ready to die. I couldn’t see any other way and you singing made me realise what I was leaving. And I wanted you to stop. It hurt me.
Why did it hurt you to hear me singing? I ask, although I already understand why.
She sighs, as she often does these days. Because it reminded me of everything I’ve lost.
In the afternoon of the 29th I travel down to the Gold Coast for a swim and dinner with friends. As I unfurl near the sea, I am suddenly in love with everything, the water, the sky, the air, everything that is not to do with sickness and hospitals. The next day, as I travel back from the Gold Coast for another attempt to see Mum’s doctor, I see a large black and white sign on the side of the freeway that says PARKINSON’S SUCKS!!
Yes, I scream as I pass the sign. It sucks. It bloody well sucks.
I appreciate the rawness of the sign’s language, its simplicity. As I bang my hand down on the steering wheel, my eyes stream with tears. I am determined now to write the story of what has happened to Mum. To us. To find another voice. A musical writer’s voice. And I will call my book simply this: Parkinson’s Sucks. Along with a myriad of other things. Forget metaphor. Forget poetry. Sometimes two words screamed out on a concrete highway say all there is to say.
But it is not just Parkinson’s that sucks. Dr Goldman has promised her an early appointment on the 30th. When I arrive at the hospital Mum has been up for hours, excited by the prospect of a visit from her neurologist, who now calls her ‘my girl’. I notice she has powdered her face and put on her special dark
lipstick, as well as the diamante earring and necklace set that Dad bought her just before he died. She lies on her bed in her red and white Christmas frock, hands clasped demurely, and when I tell her she looks beautiful, she acts coy, like a Tennessee Williams heroine waiting for her gentleman caller.
At eleven o’clock, after three hours of waiting for her gentleman to call, Mum’s makeup begins to cake as her body grows rigid. At eleven-thirty, she has a session with a physio called Audrey, who teaches her how to sit up and down correctly, how to stay calm when anxiety takes hold before her tablets are due, how to navigate herself physically through the rigidity that gradually takes over her body during the course of the day.
After Audrey leaves I go home, have lunch and take a short rest. I feel uneasy at the thought of Mum waiting much longer. I am just being paranoid, I tell myself, I am ‘tired and emotional’, suspicious, like Mum, of everyone and everything now. Still, unable to sleep, I ring the hospital to see whether the doctor has turned up.
The only news is that Mum has spilled some of her lunch onto her freshly washed dress and that her lipstick has bled into her makeup and is now staining her teeth. She pretends she doesn’t mind waiting, but I recognise Mum’s passive acceptance as a precursor to a deeper anger that she will only articulate later to me.
At seven-thirty in the evening when I go back up to the hospital there is still no sign of the doctor. Mum and I do not speak about our disappointment; instead we numb ourselves with television, sweets and meaningless chat. At nine-thirty, the time I discover that Mum’s doctor has just phoned the nurses to say he is not coming in at all, Mum is curled up like a baby on her bed.
