Whine n Wisdom

I Would Find Life…

‘It’s hard boiled egg for you Mum, ROCK hard,' shrieks my youngest sister from the kitchen accompanied by the din of crashing pots and pans. Meanwhile, another sister and I look on as my mother defiantly washes herself in the guest bathroom, a big middle finger to her doctors' orders and her offsprings' handwringing. 

My mother is dying. The doctors tell us it’s a matter of months but we’re not placing our faith in their medical predictions. Death is the thing in control here; playing an excruciating game with us; toying with our base natures, exposing it to harsh scrutiny. As if there’s not enough already going on. 

Of course it’s cancer. What else would it be in this age? Well, maybe dementia. But wait, that’s my father’s illness. Vascular dementia to be precise. Who says you can’t have it all? For my mother it’s a brain tumor; an insidious and deadly melange of anaplastic astrocytoma and glioblastoma multiforme. Its rubbery tofu doing who-knows-what to my mother’s quick mind. We had an inkling of something awry. Mum couldn’t sit still if she tried but for months she had been laid low by a crushing fatigue. And in true form, she pushed and pushed at it, not slowing down but working around it because life is life; one gets stuck into it. 

The initial shock galvanized us all into sudden movement. Siblings threw belongings in bags in far away cities, canceled holidays, put careers and study on hold, made arrangements for offspring and then rushed to cars and planes to be with her. As if careening to her side would be an indication of the depths of our love, our sorrow, our eagerness to help. As if all this would give us a mark out of ten. 

My mother was endlessly involved with her family, her friends, the next trip she would take, the next cause she would fight. But only now that the blanket of cancer and impending death has muffled my mother's joie de vivre and her energy do I see the complicated and complex woman she always has been. Children—regardless of age—are very reluctant to allow their mother’s separateness. And I'm only forced to acknowledge it because she now has such little interest in us. Thanks cancer for that bit of community service: shining a light on what an egoist I am. 

‘Ask me a question,’ I implore down the phone. Before this cancer cabaret, Mum would call me up for an almost daily chat. I would look at the familiar number on the screen and debate whether to answer or not. I had things to get on with and a conversation with my mother would invariably be a mash up of aggravation, humor and impatience. My phone log is a statistical history of all those times when I didn’t answer. And now it’s me who calls and my mother is not fussed either way if she speaks to me or not. ‘Ask me about the weather,’ I implore her. 
‘How did you sleep?’ 
‘What are you eating?’
‘Are you in bed or sitting in your princess chair?’
'Who's visiting you today?'

Now that I want to know her, now that it's not possible to have her attention, now when I want to understand this woman, my mother turns the pages of the newspaper or becomes engrossed with news reports on Schapelle Corby, utterly disinterested in what I want. Karma. It'll hunt you down and slap you about. 

We’re now months into this. Ma has had the obligatory 3 weeks of radiation in May last year, with the doctors stressing that this was only a means of slowing down the tumor’s insidious progress. And since this treatment, no further discussions with the oncologists about starting chemotherapy, no suggestion of surgery, only a follow up MRI that says not much at all. Medical staff are no longer in the picture unless it’s to relay further news: you can no longer walk, you are expected to die in the next 6 to 9 months, you will lose all cognitive abilities, you will have the mind and motivation of a five-year old. 

And my father can’t reach her or help her or help himself for that matter. He is missing in action. The family doctor comes to visit both of them and he asks my father ‘do you know what’s happening to your wife? I need you to look at me and let me know that you understand.’ And dear old Dad looks at his feet then across to my brother and I as if we can provide an answer. We gaze back at him in silence. He looks like a child being scolded but doesn’t understand why.

I would find life…unsure.

We all have our moments of selflessness. But it’s a bargain you cannot win. Even with five offspring, it’s not possible for all of us to share equally the burden of my parents’ illness. After Ma’s biopsy, we set about like good children to have her recover and/or die in her home by the ocean. Such devotion, who was I kidding? Perhaps we all had collective visions of Beaches the movie; all of us some version of a wise-cracking, gum chewing Bette Midler while my mother smiled winsomely and occasionally looked off into the middle distance. Certainly I had the idiotic notion that the sound of the ocean, its unceasing, susurrated breath-in-breath-out the soundtrack to remind us that death hadn’t won. Not yet! 

In my fantasy, Ma would sit on the deck nursing a dry sherry dolling out all her urgent wisdom now that the hour of her passing was near. We would steal moments alone with her to hear her say that you were my favorite, don’t tell anyone else. That the meaning of life really is to eat more roast chicken sandwiches with whole egg mayonnaise. That you were adopted and your birth mother invented Spanx. 

The reality couldn’t be scripted if we tried. 

And so here stand three of us in a wet standoff with a stubborn, naked and dying woman in the guest bathroom. And we reel from the undiluted fury we have. My sister is still yelling in the kitchen. Something about getting on a plane to Hawaii and having someone call her when it’s all over. ‘I can’t bear to look at her,’ my other sister tells me and retreats to another room. I stare at my mother and want to shove a fist into my teeth and bite down. She sits on the shower chair holding the nozzle of the shower while water sprays indiscriminately around the room. ‘Fetch me a towel,’ she tells me, like a queen. An evil queen.

I don’t know if it’s a dirty secret about death, if it’s some conspiracy amongst the bereaved or if you hear it all the time but don’t pay attention, and the secret is this: you will have a visceral loathing and impatience towards the dying that could stun a horse. You will find yourself leaping from a car to run screaming towards a frail woman on a sidewalk with a walker, you will yell at her not to show initiative, not to act independently, to only do as someone else tells you. You will watch the back of your mother’s head while she sits on the deck overlooking the ocean on her birthday—perhaps the last birthday of her life—and you will instruct your niece to go out and sit with her because you don't trust yourself to be in close proximity with her. Why? Because yet again, she’s hoisted herself out of bed despite the risk of a fatal fall and you’re monumentally pissed that the seriousness of her illness is not getting through to her. You will refuse to acknowledge the insidious tentacles of her duck-egg-sized tumor malevolently sucking into her mind may account for her loss of cognitive control. 

So you will deliberately and willfully boil the bejesus out of her breakfast egg, knowing that she delights in its soft boiled googiness with crisp, warm toast and lashings of butter. You will bang it down on the table and leave her to eat it on her own. When she puts her hand on your thigh as you drive her to and from the daily radiation treatment, your skin will literally twitch with rejection. Such will be your rage.

And death will play with you in the most insidious manner imaginable: you won't know if its spectre is a mercy for you or for your mother. 

On particularly bad days, I wonder if we’re performing a show for the benefit of friends and relatives, instead of my desperately sick parents. Appearances are everything, even in dying. We’ve set a standard and by god we’re going to stick to it. But we keep forgetting the only lesson to grasp: there will be no control. It's why there are screaming rows in hospital car parks about where to leave the car, it’s why we need to know exactly where we’re sleeping in our parents’ house when we visit, it’s why I don’t oblige my mother when she says I should stay another 3 months instead of flying back home to Colorado.

I would find life…unacceptable.

We have cancer too. No doubt my mother would have something to say about that but it’s the obvious metaphor. It’s a metastatic growth of tension, peevish arguments, jaw-grinding frustration, impatience, jealousy, love, sorrow. If any of us thought that straightforward empathy was going to be the order of the day, then that was exhausted within the first month of diagnosis. I read the bit about empathy in a pamphlet for carers when my mother was admitted to hospital for her biopsy. I am down with that, I thought at the time. Some days, it’s a struggle to find a soupçon of empathy and patience for the stream of beloved relatives and friends who have come to sit by my parents' side, let alone for Mum and Dad. Empathy is best practiced from afar. And afar is very much where I've placed myself. I fly back to visit for intense 3 week bursts and resist with all my might any request to extend my stay. There’s only so much I can take. But with distance also comes a probationary grief and guilt that lodges stubbornly in my throat, a stone that swallowing and saliva can’t slick away. 

Distance allows for a lavish, selfish sorrow to drown out the immediacy and stress of her care. From a distance I can squelch about in a swamp of memories until I stretch my neck to the ceiling to properly open my throat for the howling. And then the crying will abruptly stop because it’s so pathetically self serving. Far away, I am very careful about what’s playing on my playlist; any music will potentially set me off. Whereas by her side, as she presents this cheek and then that cheek to kiss, Diana Krall purrs out Burt Bacharach and I’m utterly unmoved.

The closer I am physically to my parents, the bottomless love that I wallow in is drained quicker than yanking a plug from a sink. Distance allows you not to get the shits.

While my mother was still at home, we had a 24 hour roster in place to manage her care. We gave Mum a bell to ring during the night. Its jangle would penetrate the deepest slumber and we’d jack knife upright and stumble blearily into her room to take her to the bathroom and run interference on her wishes and wants: no I’m not giving you your phone, it’s 3 in the morning and no one is going to appreciate your call. Can you save the chocolate bullets for later in the day, you’re staining the sheets. I’m not showering you at this hour, we’re waiting for morning; the home care nurses have that job.And no, you can’t have your iPad because you should be sleeping.

Some nights one of us would find her standing by the bed, her walker tucked well away in a corner of the room. The darkness, the cold, the shadowy, unstable form of my mother swaying uncertainly on her bare feet, would trigger a stab of shock and rage on our part and tears and frustration on hers. Mum wanted to help by clinging to her independence, what is more independent than taking yourself to the loo? Surely the terror with brain cancer is the inexorable encroaching loss of reason mixed with faint traces of sanity to taunt the sufferer with glimmers of who they once were. My mother tells us—dry eyed—she wants to grieve but doesn’t know how. She knows something is desperately wrong but exactly what eludes her.  

Early on, a social worker at the hospital asked if Mum and Dad had Advanced Care Directives. They did we said, basking in a delusional miasma of we-are-well-organised-and-we-have-this-death-thing-licked. Later, I laughed grimly as I read them. You can’t blame bureaucracy for not factoring in bat shit craziness. Theoretically, these non-binding documents can give a misplaced solace and comfort that the transition from diagnosis to death is straightforward. Would that that be the case. The boxes my mother has ticked are straightforward, no nonsense, the answers given when illness and death was an intellectual exercise, a considered concept at some point into the future. All of us oblivious to the wave forming unseen that would swamp us all.  

If I can no longer recognize my family and loved ones, I would find life…, if I no longer have control of my bladder and my bowels, I would find life…, if I cannot feed, wash or dress myself, I would find life…

Unbearable.