Learning how to Breathe

by Neil, Linda;

  Michael is staring straight ahead as he walks towards me, so I can easily veer off without him noticing me and avoid this encounter completely. In the past perhaps this is what I would have done. But this time I stop softly in front of him and say: Hi, Michael.

  Mike looks as if he has changed too. He has always been tanned, but now his face is red, almost orange, and his hair is prematurely grey. He looks odd and distinguished. Even in his grungy barefoot days he always struck me as being the most graceful creature I had ever seen. Now he reminds me of an elegant, short-sighted, red and grey bird with his thin, lanky body, hooked nose, and glasses through which he looks down on me looking up at him. The patterned shirt and black jeans he’s wearing make him appear individual, stylish and, at the same time, as if he doesn’t care at all. Here he is, I suddenly think, after all these years, still a strangely compelling force of breezy lightness and angular movement.

  He seems surprised and uncomfortable, and I wonder whether that is his natural state these days or whether I have made him feel like this.

  Um … good to see you, he offers after a few seconds of mumbling hellos.

  You look well, I say, peering closely at his face which, despite its deep red colour, is unlined and free of wrinkles.

  You do too.

  I wonder whether I do. I am fatter than when I knew him, but with the extra fat have come glowing skin and a plump face. I am also suddenly aware that I am wearing a low-cut baby doll dress with a push-up bra that gives me the kind of cleavage I never had when I knew Michael Franklin.

  Um … what are you up to? Michael asks after a few more uncomfortable moments.

  I wonder whether he really wants to know, or if he is just being polite.

  I’m um … buying something for my mother, I manage to stammer.

  He seems bored and looks away. Discombobulated, I think. That word again. The whole world has gone discombobulated. Including me. So there will probably be no long conversation forthcoming that might fill in the years I have lived since I parted company with Michael. No chance for a wise summation of the understanding I have gained since our break-up. Now there is nothing but this awkward man trying to get away from me outside a pub where we once played music.

  Michael and I have barely spoken for nearly ten years since we parted. I was distressed when he married and had a child, but heartbroken when he did not reply to the letters I wrote him. I don’t really know what I hoped to achieve by reaching out to him. Forgiveness. Understanding. Acknowledgement. I never wondered, as I do now, if perhaps he needed those things from me too. I didn’t think he would reach back. He had moved on and he was not a man who could be reached, I eventually realised. At least, not by me.

  Michael refuses my offer to take him for coffee. I am uncomfortable too, aware that, unlike him, I am childless and living with my sick mother. I feel pathetic, overeager. He seems anxious to go. We part casually, me pretending not to mind, he probably not minding at all. After saying goodbye outside the Boundary Street Hotel, I run into him again down the road towards Melbourne Street. He seems uneasy, sheepish that I have turned up in his path again.

  After me blabbing for a few minutes, he starts moving away.

  Got to go, he growls abruptly.

  I feel hopeless, as if I am covered in wounds.

  Sorry, he calls back as I move my hand towards him, offering a tiny gesture of farewell. Got an appointment.

  I can’t help myself. I am small, but I am compelled to make myself smaller. To beg, as I always have, for some thread of connection with this man.

  Um … I’ve got some songs I’ve been writing, I call out. I want to record them soon and I need a guitarist. A good guitarist. Like you, I could have added. It is horrible to use music for such a purpose. I am ashamed, even as I say it, and try to back off. To find some dignity from this encounter.

  He shrugs as he backs away. Sure yeah … give me a call.

  Um … I don’t know your number? I yell back, but he is quickly out of earshot.

  I watch him sprint towards the traffic lights on Melbourne Street and then cross the street and head up towards the West End Market.

  I feel pathetic, powerless at still not being able to say the words I want to say to Michael. To say to this person who moved on years ago: ‘I want to know what I was to you. I want to own the part of my history that is also your history.’ But I realise that I will never be known by him again. That I will never be able to speak. So while I stand there in Michael’s smoky residue, I try not to think of the open-hearted girl I was when I first knew him, or the breakages that were to come.

  I feel dizzy. My bones ache. I can hardly breathe. Suddenly I am glad I am on my way back home, back to Mum’s house. I could never relate to her at all when I was with Michael. I resented her then, living my passionate, unruly life, blaming her for things I knew later I was entirely responsible for. But I have something to share with her today. We have something in common.

  A singer is chanting on the car radio. I can’t really understand the words he is singing, so I make up some of my own. In all kinds of weather/ Forever and ever …

  I sing along, forgetting for the moment my own songs, or my old songs, feeling grateful that I am older and wise enough not to be too brave, too strong, but to feel my aching breath.

  We’re all in this together, I whisper into the rear view mirror. Together.

  Forever …

  I am halfway home before I realise I haven’t gone down that cross street I was looking for. As in the past Michael Franklin has stopped me in my tracks and made me forsake my immediate plans. But I don’t turn back. Mum can start to walk on her treadmill another day. As I can. I keep driving for home, where I will unpack my guitar, gather up all my spilled words, and strum a new love song for my mother as she lies exhausted and stiff in her bed.

  IN A MOONLIGHT GARDEN

  Mum’s recently appointed physician, Dr Davies, whom we have consulted about her increasingly frequent falls, suddenly tells her one morning in May 2000 that she might have Parkinson’s disease. He uses the word ‘might’, I discover, because there is no clinical test for this disease, and little concrete information regarding its causes or cures. Though his casual pronouncement is a shock, the possibility that Mum has something seriously wrong with her doesn’t come upon us as a complete surprise. Nurses and others who have seen Mum during the past year had begun to enquire, innocently enough, whether she already had the disease.

  She has the frozen face, one nurse’s aide whispers to me, and the dead eyes.

  Mum has also found it harder and harder to smile. Look at my face, she says, staring at herself in her hand-held mirror as she tries to practise her smile. I can’t smile naturally anymore.

  We both examine her various attempts at smiling. Many of them look like the performer’s smiles she used to wear in family or social photographs, which we would mock when we were kids. But no matter how much she tries to force her mouth into the kind of smile she has practised for years to acknowledge applause or engender confidence during public speaking engagements, she confesses to me that she now seems to have no control at all over her facial muscles.

  Mum once wrote that singing takes a lot of courage. ‘Sing and enjoy’, she wrote in the Music Teachers’ Association’s newsletter in March 1989. ‘Try for an enormous feeling of love in the singing, then you won’t get caught up in the technique. If the sense is right and you have knowledge of the situation, forget about the vocalising and you’ll make the right sound.’

  I know that this is also the time to try for an enormous feeling of love in every word I speak to her. It’s hard to know what to say, though, to someone who wants to die the way that Mum, during the five terrible weeks she stays in hospital after her diagnosis, wants to die. No one can plan for conversations like these. All I can really do is encourage her to keep eating when she refuses the awful hospital foo
d in the hope she might literally fade away. I’m not prepared, though, for how hopeless she feels – not this woman who used to embarrass me sometimes for being so bright, so strong and alive. Her sudden depression enters our bones like poison. As her strength ebbs, I feel the need for mine to rise. I begin to walk to the hospital instead of driving; I lift weights instead of sleeping in. I rise at dawn to stretch and do yoga. I take on my new tasks as a warrior would, and prepare myself for a long and difficult battle.

  Her suicidal feelings pass, but their uneasy remnants take hold of us.

  Joan: I never really seriously thought about suicide. Well, maybe I thought about dying, but not actually doing it myself. Because I suppose, being a religious person, it’s not part of my makeup to do violent things like that. Perhaps that might suit some people more.

  Linda: Doing violent things to themselves?

  Joan: Yes. They might say ‘let’s get it all over with’. But if you don’t do that of course you suffer a lot more probably. As the years went on, I mixed with other people with many symptoms much worse than mine, and I sympathised with them and their trouble. I learnt of all the troubles which people experience in their lives, which, funnily enough, I never thought would enrich their lives.

  Linda: You didn’t think it would enrich people’s lives to suffer?

  Joan: No. But I don’t know how many people do suffer. I don’t know how many people do have their lives enriched. Perhaps a lot of them are like me.

  Linda: And what are you like? What’s that?

  Joan: Well, my whole life was music, wasn’t it? The only people I mixed with were musical people, my students and other teachers. I could have gone on with that but I didn’t, because I just lost the will to do it. And I can’t think of what I’ve done since, really, can you?

  Cathie has written down for me her own memories of these first few weeks and months following Mum’s diagnosis:

  Cathie: When a doctor joked that Mum looked like a ‘Parkie’, I initially was appalled at the lack of apparent care, concern and information that seemed to be available from this profession. I was shocked at the casual way they referred to people in Mum’s situation. I expected them to cure my mother and was angry that they did not seem to know how. Like most things in life, you have to try to take some control. So we all started to investigate Parkinson’s and found a myriad of information. The challenge it set us as a family was that we all wanted to help and make Mum better. But no one really knew how. We all had different ideas and there were arguments and disagreements for many, many months.

  I will wonder during the next few months whether Mr James Parkinson, who first described the as-yet unnamed disease in his 1817 paper ‘An Essay on the Shaking Palsy’, ever anticipated the dread that people feel when told they have his disease; and, if so, whether he might want to change its name after all, or his own, if only to avoid guilt by association. Although celebrities such as Michael J Fox, Muhammed Ali, the Pope, and my grandmother’s favourite violinist, Yehudi Menuhin, have given the disease a profile, it still has not entered the public’s consciousness as strongly as cancer and depression have.

  After our initial shock has passed, I begin to realise that Dr Davies’ casual use of the word ‘might’ is significant. It really does seem as if no one can confidently diagnose Mum and that a full assessment can only be undertaken over a lengthy period of time. I also find out about ‘parkinsonism’, a condition which apes the physical symptoms of Parkinson’s but which is sometimes caused by the side-effects of certain medications. As Mum has been medicated for over a year now, I don’t really want to make the immediate leap from the equivocal ‘might have Parkinson’s’ to the more conclusive ‘definitely has Parkinson’s’ – at least not while there are less dire possibilities still available to us. Mum, on the other hand, seems relieved that her ailment finally has a name. Perhaps she finds it easier to face something that has been labelled rather than something more mysterious; perhaps, for her, Parkinson’s is also a more acceptable ailment that a ‘nervous breakdown’. So she agrees readily when Dr Davies, after a brief consult with Westminster’s resident neurologist, suggests she immediately begin the treatment of the L-dopa medication prescribed to replace the dopamine that is apparently disappearing from her brain.

  Dr Davies also suggests we appoint a neurologist to work with him to devise and oversee Mum’s course of treatment. We try out a few specialists until we find a ‘handsome one’, Dr Silver. After running some tests, Dr Silver considers Mum’s case to be fairly mild. Relieved, we hear stories about patients who manage the disease for decades, who go on to die peaceful and painless deaths. Soothed by these benign tales, we hold out hope in the face of Mum’s dread.

  I receive information about the illness from many different places. Mum’s friend Marjorie Anderson sends newspaper cuttings and downloaded data from the Internet as well as anecdotal information. ‘Beryl Jackson’s husband Harry got the disease and spent several fruitful years in a retirement village,’ she writes to me in spidery handwriting. ‘Then all of sudden he just bent right over and never straightened up.’

  Mum now has two doctors at Westminster Hospital – Dr Davies, her general physician, and Dr Silver, her neurologist – as well as the psychiatrist she has seen on a casual basis during the past year or so, who is on holidays during the period when Mum is first ‘diagnosed’. Apart from these professionals, we receive information and advice from a variety of sources. A naturopathic acquaintance from Byron Bay sends alternative magazines with suggested treatments: a vegetarian, non-dairy diet with no excessive sugars and lots of meditation and relaxation exercises, but Dr Davies scolds me for having cooked Mum the same food I eat – salads, steamed vegetables, tofu, fish and lentils. They blame her low levels of Vitamin B12 on this diet and order her back on red meat immediately. I see how she thrives on the steak pies and chicken mornay at the hospital; ashamed and confused, I promise to buy chicken breasts and mince to cook for her when she returns home.

  I suggest an accompanying course of treatment that includes massage, acupuncture and yoga. The response is a mixture of condescension and annoyance. Well, it can’t actually do her any harm, a harried nurse tells me when I try to discuss such treatments with her. But we have a lovely hydrotherapy pool and I strongly encourage your mother to try that.

  So to the pool we go, each day during the last few weeks of her stay in hospital and then once or twice a week when she leaves. Among the overweight geriatric patients and arthritis sufferers, Mum is resplendent, slim and pale in her one-piece costume. To protect her hair, I bring from home the only swimming cap I can find: a gold lamé number which fits comfortably over her curls but, as far as I can tell, would be absolutely useless if her head was ever submerged. It never is, of course. Despite her husband and all of her children being trained swimmers, Mum never learned to swim anything but dog-paddle, which she practises dutifully up and down the small heated pool, carefully avoiding the older, frailer patients who are being held like babies in the water by physios or loved ones.

  After the trauma of the disease’s naming, Mum seems to enjoy the new variety in her days. We will become therapy junkies, I joke with her as our diary begins to fill with all sorts of new appointments. Soon after her diagnosis, Dr Davies, who is ‘the top physician in the hospital’ according to Marjorie, as well as Mum’s coordinating doctor, presents us with a roster of suggestions regarding Mum’s treatment: as Parkinson’s disease, or PD as those in the know call it, causes both cognitive and mood disturbance, first on the list is finding a psychiatrist who specialises in dealing with aging neurological patients, in which category Mum now apparently belongs.

  There are psychiatrists on staff at the Westminster, for instance, who are aware of the relevant statistics, such as the seventy percent of Parkinson’s patients with pre-existing depression who go on to develop anxiety, or the ninety percent with pre-existing anxiety who will develop depression and a
pathy. We are lucky that psychiatric care qualifies for rebates under Medicare, as well as Mum’s private health insurance, because it seems we will frequently be availing ourselves of their services in the future. To me, their fees seem inflated – Mum’s first appointment costs one hundred and twenty dollars for fifteen minutes. I have also discovered during the past year that most psychiatrists rely heavily on prescribing drugs, rather than other types of therapies, as a result of their belief that most emotional and mental ailments are caused by chemical imbalances in the brain. Though I respect medicine’s ability to repair many ailments and, like my grandmother did, wonder at the ‘miracles of science’, I am uneasy about this approach and about mainstream medicine’s general reliance on drugs to treat emotional problems. None of my fears will prove groundless during the next few years, but I understand I am out of my league here – at this time, I know next to nothing about Parkinson’s disease. So all I can do for the moment is try to be a good daughter and dutifully go about the business of booking Mum’s appointments and then buying – or procuring, I sometimes joke with her – the drugs that she is now prescribed for anxiety on top of those she is already regularly taking for depression.

  Mum’s new treatment plan also involves a multi-pronged approach to maintaining those faculties that are considered most likely to degenerate first: in the case of PD, officially categorised as an idiopathic disease – meaning ‘having no known cause’ – the list of symptoms that may begin to affect her are ‘shuffling gait’, ‘stooped posture’, ‘muscular rigidity’, ‘monotonic speech’, ‘tongue swallowing’, ‘hypomimia’ (frozen, mask-like face), ‘micrographia’ (small cramped handwriting) and ‘drooling’.