by Neil, Linda;
To begin our resistance to these degenerations, I make a whole week’s worth of appointments – with psychologists, occupational therapists and physiotherapists, most of which are covered by Mum’s health insurance. When the bills for these services begin arriving, I sometimes wonder, while thanking our good fortune, how people without cover manage; how they face their ordeal without the team of doctors and therapists that now begins to work on our behalf. Another member of this group is a speech pathologist called Sarah who used to learn singing from Mum. It’s humbling for Mum to need the help she used to give professionally, but she takes the role-reversal well. I’m impressed at how she accepts instructions about vocal functions from Sarah, who is deferential, encouraging, and proud – as a mother might be – of Mum’s progress.
I wish I could be as humble with Mum’s doctors as Mum is with Sarah, but sometimes I can’t help myself from asking the kinds of questions that used to annoy Mum so much when I was a child. Mum and I argue in private, as we often do, about her medication, but she’s too anxious – and too polite – to directly address her doctors herself. She wants what I suspect she’s always said she wanted – a quiet life. I can’t stay quiet though, not even on her behalf. Like the ‘enfant terrible’ my Aunt Lal used to say I was, I just can’t stop asking questions.
Mum’s new hospital-appointed psychiatrist has me pegged as a troublemaker, I suppose, from the minute I walk through his door and ask: Wouldn’t an anti-depression drug counteract an anti-anxiety drug?
Away from the hospital we might get on. He might encounter me playing violin somewhere and be moved to tears, as people sometimes are, by the sound of the strings singing. But right now I’m not singing and he is only moved to defend his position: Not if we get the balance exactly right, he answers confidently before ushering me out to make way for his next appointment. It might take a while but that is our aim: to get the balance right.
Getting the balance right: I will hear this phrase a lot during the next few years. The balance between depression and anxiety. Between highs and lows. Good times and bad times. Between Mum’s needs and my needs. I just wish I could get the balance right between our needs and the needs of the medical authorities, wish I could button my lip and proceed gracefully through the hospital corridors, only whispering a sweet song as I go.
Two months after Mum’s initial diagnosis, Dr Davies, in consultation with Dr Silver, tries her out on a different, stronger Parkinson’s medication. The side-effects – sweating, nausea and headaches – are immediate and she begs me to take her off the drug. We are in her hospital room again when we discuss our plan of action.
I don’t think I can do that, Mum, I try to cajole her.
Of course you can. We can do anything we like, she says stubbornly, sitting up in bed with the sheets pulled up high under her chin like a recalcitrant schoolgirl. It’s not a prison here.
I have to laugh. Mum reminds me so much of me as a child that even she might find it funny if she was not so preoccupied with her problems. I remember once being so angry at being locked out of the lounge room in our holiday house down at the Gold Coast that I smashed my knee through the door, shattering the glass and tearing my knee to bloody shreds. I can’t remember what I did to warrant such exclusion, but I do remember the shock on her face as she witnessed just how far I would go – and how much I might hurt myself – in the name of my freedom. Purple with fury, I bent over and screamed at her and Dad for locking me out of the family space, screamed at them to let me back in. She might have forgotten scenes like these, but I never really have. Even with the value of hindsight I have never really understood why I felt such fury as a child; I only know, for sure, that I did. I wonder now whether my sudden fits of anger were a wound for her, a rough scab on what she hoped might be a happy family life. At the time, if she didn’t yell back or stand there staring at me, she would just laugh at me, which only made me angrier. Now here we are, so many years later, mirrors of each other and the way we once were.
But things are more serious now. Mum’s health and security depend on us finding ways to communicate properly with each other. And with those around us.
I have no idea what you’re talking about, Linda, she answers innocently, looking away coyly. If you don’t do anything about it, I’ll just refuse to take it.
She is stubborn, demanding. I put these swings and shifts in mood and attitude down to the medication she’s taking. Sometimes I don’t recognise her at all and wonder whether what I am witnessing is an aberration or evidence of part of her character that she has managed to hide all these years. Whatever the truth is, I have to adjust quickly to new situations and new sides of my mother. This time, I go along with her and tell the nurses not to give her the drug. I know what I’m asking is against their code of conduct and that only the doctors have the power to change Mum’s medication, but I am as adamant as Mum. I have my own problems with authority.
You have to ask the doctor first, Mum’s nurse pleads with me.
We can’t wait that long, I huff. It takes days to see the doctors. If they’re too busy to come and change it themselves, we just refuse to take it. Mum refuses. She doesn’t want it.
It is the first of many mistakes I will make regarding diplomacy and protocol in the hospital. The words in the phrase ‘under a doctor’s care’ are not there by accident. The hospital hierarchy seems to be both inevitable and problematic. The patient is under, it appears, and the doctor is over and above. Dr Davies, who refuses to speak to me at all after this incident, rings Paul to complain. During this phone call he refers to me as ‘a ratbag’. I think he may also have used the word ‘scurrilous’.
When I was nine, I won the violin section of the Brisbane Eisteddfod playing ‘In a Moonlight Garden’ by Dr William Lovelock. It was a slow, simple piece of music and, as usual, Mum accompanied me on the piano. I was competing, as I often did, against older girls who played things like Mozart’s Violin Concerto in E, or Sicilienne and Rigadaun by Saint Saens – serious music choices for serious violinists. The adjudicator commented in his written remarks that while I had an unusual flair for interpretation and a melodious feel for the instrument, I needed to hold the violin up higher and that my stooped posture made me look as if I was carrying the weight of the world on my shoulders. Despite my lack of physical grace, he awarded me the first prize anyway and commented on my ‘natural instinct for melody’.
She’s a nine-year-old girl, my mother hurrumphed as she later proudly displayed my first prize medal to her friends. Why would she have any weight on her shoulders? She doesn’t have a care in the world.
My aunt Lal, who was married to Dad’s brother, Bill, visited soon afterwards. I played ‘In a Moonlight Garden’ for her, but she was more interested in my increasingly rounded shoulders than she was in the music and taught me some ballet exercises to straighten my back and shoulders. But the violin drooped more and more. Sometimes in my hands it felt as if it weighed a tonne.
You’ll thank me in the end, Mum would say as she banged out the notes of ‘The Blue Danube’ on the keys of her Schirmer upright. You’ll all thank me one day.
I’ll never thank you, I answered her. Never never never.
Years later as I began to write about all these things, I played ‘The Blue Danube’ in a thunderstorm in a small town south of Paris to a woman, the mother of a friend, who was sick and slowly dying. As the rain pelted down – clackety clack – on the tin roof of the house, I remember the hours Mum spent pounding out notes for me to hear – clackety clack – on her old piano in that rhythmic thump. The storm brought a strange ominous counterpoint to Strauss’s lightness, as if nature itself was playing a duet with me, reminding me of things that survive despite people’s best efforts to destroy them. The sound of the violin seemed to ease the woman’s physical pain. Keep playing, she whispered across to me. Don’t stop. Don’t ever stop.
I took her words to heart. I didn’
t stop. I kept playing the violin all through the storm, just as my grandmother would have dreamed of doing, even after the lights went out.
VOICE IS THE MUSCLE OF THE SOUL
During the period following Mum’s diagnosis, I sometimes took my mini-disc player to her hospital room and asked her if she’d like me to record her voice. ‘It doesn’t matter what you say,’ I encouraged her. ‘Say anything that you feel, things you remember, things you worry you might forget. Speak about the things that you love, the things you fear losing.’ She was reluctant at first; she associated the microphone with public speaking and having to do things in the proper way. But gradually she relaxed and began to use her voice for things other than singing, instructing students or going about the business of her daily life. As we struggled together during those first despairing weeks, I listened at her bedside while she reached inside herself for the memories and stories that transformed her, for a while at least, into the family chronicler, a position she had always been too busy working to occupy before.
As she spoke I could hear Mum’s connection to my sisters in a way that helped me to feel more connected to them as well. I discovered, for instance, that my sister Janice ‘was a bundle of energy from the moment she was born, though there was something else there too; you felt she knew things, understood things about the world way beyond her years. She was like a shiny, bright little button, but even the neighbours called her an “old soul” when they saw her bubbling away in her pram. They thought she was only gurgling, but I could hear, even before she could speak, that she was already singing.’
When she got too old to gurgle, singing made her beautiful just as it did our mother, who often performed vocal duets with Janice, at home or in private recitals or musical gatherings. Later, when Janice’s singing talent presented her with career opportunities, Mum sometimes sat for hours at our dining room table putting together Janice’s audition scrapbook and she was proud when Janice became the kind of singer who could work professionally in various genres, from opera to musical comedy to a capella, jazz, pop and Australian musical theatre. Janice included Mum in many of these musical adventures and was a vivacious and attentive daughter. Although she had the buoyant personality and energy for performing, she also loved the richness of words and ideas – I have vague memories of her singing Streisand songs while reading Dostoevsky – and after she finished with tours and shows, she found a profession that allowed her to integrate this other passion and became a librarian.
Singing made Cathie beautiful too. She learned how to from Mum – something I would never do – and accompanied her to dozens of vocal workshops and seminars. But she was a natural leader and organiser of groups and studied to become a conductor – of orchestras, jazz and swing bands as well as choirs. Mum would often fly to North Queensland, where Cathie headed up school music departments and directed community choirs and bands, to see and hear these groups perform with her radiant eldest daughter at their helm.
Mum told a story about Cathie, a school band and a triangle:
It was the end-of-year performance and she had been given the responsibility of playing the triangle in the primary school band. Even as a child she always took her duties very seriously, as you know, and I remember her before the band went on, her little face all lit up, so proud to be involved in her very first concert. Well, when the music started so did Cathie’s tears. Oh, it was terrible to watch. She didn’t run off or anything like that, she just stood at the back of the band holding the triangle in her hand with tears rolling down her cheeks. After it was over we found her outside. She was distraught. I asked her what happened and she looked up at me and said in the most tragic voice you can imagine: ‘They gave me the triangle, Mum, but they forgot to give me the stick to hit it with.’ She hadn’t asked anyone for the stick or run off to find it because she didn’t want to disturb the performance for anyone else. Even now I see that little girl in your sister: she’ll stand there not wanting to make a fuss, just so the show can go on.
After nearly three months in and out of hospital Mum is so anxious now she finds it hard to sleep alone at home. The whole family is alarmed, solicitous and everyone is immediately involved. There are no detached silences from any of Mum’s children. Paul comes in for regular visits to hospital, Stephen calls from Melbourne where he is now living and working, and Janice phones from London where she works.
A few weeks later Cathie takes time off work in Townsville to fly down to stay with us. She is shaken by Mum’s situation and tries to reorganise Mum’s therapy regime, encouraging her, as Mum once encouraged us, to work her way through her fears and worries with persistence and diligence. But Mum just wants to be held and protected now. This new dynamic is difficult to adjust to. Cathie and I both now sometimes climb into bed with her when she wakes terrified during the night.
Neither Cathie nor I are prepared to be so suddenly thrown together in crisis mode. She is used to mapping progress through timetables and hard work, while I rely more on the same instincts I use to make music or write a song. I suspect she finds the chaos in our lives unacceptable and within two days of her arrival she is on first-name terms with the President of the Parkinson’s Association of Queensland as well as with most of Mum’s doctors. I am rattled by our different energies but still marvel at Cathie’s efficiency as she makes lists, takes notes and follows things up with the contacts we make while we begin to explore together the world of professional caring, respite centres, hostels and the many non-profit organisations dedicated to helping people with Parkinson’s and other neurological diseases.
The old rebel in me is sometimes too ready to question the status quo that Cathie more easily trusts. I recall our earlier struggle to establish our different natures – as well as musical identities – while we grew out into the world. Mum didn’t always help things along, sometimes characterising each of us in ways that may have felt easy to her but limiting to both of us. Cathie, two years older, was always the practical daughter, while I had my ‘head in the clouds’. Mum’s illness seems to challenge these old clichés: now I am the one who is helping at home, while Cathie is out in the world exploring her talents as a teacher, conductor and musician. With our shared concern for Mum’s well-being, our former personas are not so easily worn.
One night when Cathie goes out to dinner and I go to a yoga workshop, Mum takes a double dose of her Parkinson’s medication. I don’t know whether it is an accident or a protest, but she is found delirious in her sheer summer nightie in the middle of the street by a man who lives across the road.
I have no family, Mum tells him when he asks. I am all alone.
He drops her off at the emergency ward of the Westminster and leaves a note for us to find when we arrive home later. I come back to an empty house less than two hours after I have left Mum watching television in her room. Panic-stricken and cold with guilt, I call the hospital and discover she has been taken from emergency to the psych ward and that her condition was considered serious enough to call her doctor out from home.
Driving through the night to reach the hospital the world suddenly seems luminal. I sense the anger and protest in Mum’s actions. After a lifetime of getting on with things, now she cannot seem to get on with them at all. I recall also a radio documentary I heard once called The Voice Is the Muscle of the Soul. I don’t remember much about it at the moment except its title, which I repeat over and over to myself as I drive into the hospital car park.
The voice is the muscle of the soul.
The voice is the muscle of the soul.
I say it softly like a prayer as if by saying it over and over I might call down some help on behalf of my mother.
I have no family, Mum had told the man across the street. I am all alone.
I arrive in her room and see her doctor on his knees beside Mum’s bed, clasping her hands and saying the Hail Mary.
Hail Mary full of grace
The lord is
with thee …
Mum’s face is shimmering with sweat and her eyes roll around in their sockets. Despite the presence of the nursing staff, her hair and clothes are in disarray and she tugs at the top of her nightie as if she wants to tear it from her body. I shiver. I feel that whatever line Mum has crossed tonight is in front of me now too. I can either walk away, leave her to her god and the ministering of her religious doctor, or I can walk into the room, across the line, and take her other hand.
I don’t know if I make a clear decision either way, so I will never know if this is some kind of test that I passed or not. Nor can I say with any certainty: this is the moment when I knew what I was capable of. The doctor turns to me and reaches out his hand, gesturing to me to join him in prayer. Mum is too delirious to make any coherent sounds but underneath the rising inflections of the doctor’s voice I can hear her moaning as I walk through the doorway. I step slowly towards the harsh halo of light falling down from the fluorescent globe overhead, take my mother’s free hand and bow my head in silence, the third player in this hospital tableau which to anyone passing along the corridor might seem resonant of a Vermeer or Rembrandt painting, shadowy and thick with omens.
The next day Cathie is mortified. All I did was go out to dinner, she says mournfully, I thought it would be ok. I feel like we’re walking on eggshells, I hear her continue. On tiptoes around her.
The newly tempestuous nature of Mum’s illness comes upon us both as a surprise. We begin to sense something monstrous in our mother in the grip of chemicals and disease.
After Mum’s overdose, Cathie and I spend hours together in the car during fiercely hot and humid days urgently checking out more therapy centres and rehabilitation facilities. Our nerves are frayed and disputes often close to the surface. I sense her alarm at what has happened. And sometimes, too, I feel my old sense of inadequacy at how I handle things, how lost I sometimes feel and how much better she is at managing the system than I am.