Everything is pink and green

Like bodies and apples and jeans and egos, diseases of the brain come in all kinds of shape and size. Some are honest, candid. They come out swinging and squawking like a peacock recently feathered; a first-year college student shotting a tequila dry at a city bar while their new friends slap them encouragingly on the back. They are not who they were yesterday, this is known. Not necessarily by them but those around them; it is almost a relief in the grand scheme of changed things. Others are sinister and more discreet, like a boyfriend who spends just enough time cheating on you to make you feel just lonely enough to leave him. All illnesses are cruel but this type is perhaps the cruellest. To have to face that deceitful partner each morning, to watch them slowly break you down like compost, rotting and spoiling, unable to walk away.

*

When she remembers her childhood she will picture his hands. Wide, meaty, sausage-finger hands. Strong hands. Hands that could build boats and motorcycles. Fingers that typed emails and made phone calls that fed and clothed and housed all seven of them. Fingers that knew the right pinch of salt for dinner. Hands that could get angry. Hands that spent half their time packing suitcases to fly to the other side of the world. Hands that got so tired of travelling that they never made the return trip home. Hands that will carry her own suitcase from the station when she visits him in England. Hands that will instinctively grab hers when they cross busy London roads.

But she does not know this yet. At fifteen he has only just left; one month shy of the birthday that will forever be significant, not because she is grown but because he is gone. Now she is only just familiarising herself with Skype and time zones. He travels for work often but he has never been gone for this long. Her friends joke that he is a British spy on assignment because they have never understood his job. She laughs at this and does not ask them if they think he is coming back. She is starting to realise that he has moved. It will be two years until she sees him again, when her older sister’s depression forces him to board a plane to Australia. The first time she crosses the ocean to visit him she will be on the cusp of eighteen.

She will begin to resent her resemblance to him, as without him around her disorderly dark hair will make her feel alien among her bright, golden siblings. They will not speak for a while, but after some time he will tell her that he has seen a doctor and has been prescribed drugs that will help him to control his moods. He will start to call her more. She will never forget his fingers around her throat but those memories will dissipate once she is used to this new medicated man. She will realise that her farmers-son, Oxbridge-educated dad was struggling in her small hometown on the Australian east coast. She will not make excuses for what has happened but she must and will forgive him.

On her gap year she will live with him and split her time between European hostels and his spare bedroom. She will move to Melbourne for university and ring him to discuss philosophy and how terrifying she finds this latest stage of her life. He will tell her that he is proud of her. Her boyfriend will meet him over FaceTime. She will miss him at her graduation. She will call him when she is heartbroken and when she starts a new job and when she is dating someone new. It is only when she is older that she will realise the impact his disappearance has had on her relationships with men. She will not trust them not to hurt her. She will not trust them not to leave.

In a few years he will begin to have trouble with his eyes. She will put this down to when a low-flying pheasant smacked into his helmet while he was riding his motorbike around the Wiltshire countryside. He will laugh with her at the absurdity of life while his sight slowly fails in one eye. The giant bird will become a family joke but with this partial blindness he will start to need help. She will draft his work emails and log in to his banking so he can send money to her siblings for their birthdays. It will become harder for him to find the right button on his phone to answer her calls and he will gradually stop replying to the group text chain. She will be in her mid-twenties when she finds out these are symptoms of illness. The bird becomes less of a joke.

She will wish that she knew that he would get sick. When this news breaks it will feel unbearable. It will be impossible for her to see outside of herself. She will walk her local streets and feel furious at the people ordering coffee and walking their dogs and going to the pool because the mundanity of the outside world will not reflect the tumult of her life. Then, at some point, very gently, she will adjust. She will remember that people get sick all the time, that millions of people have felt this way before her. She will be astonished that many of those people are standing upright, that they have survived the illness of someone they love. She will make a mental note to always remember that human history is so far-reaching that she is never alone in her grief. But she knows none of this yet.

*

Posterior cortical atrophy (PCA) is a rare form of Alzheimer’s disease. It primarily affects the brain’s parietal lobe—the bit responsible for understanding the information we receive from seeing, touching, smelling, tasting and hearing things—and the occipital lobe, which controls our visual perception. When this part of the brain deteriorates, all the small stuff becomes very big. Identifying the colour of the object in front of you, seeing how far you can step before you bump into the kitchen bin, reading signs, reading anything, recognising the face of your best friend. This happens slowly but the time between noticing the difficulty of these tasks and receiving a diagnosis feels brief; just long enough to visit an optometrist and be referred to a neurologist instead, long enough to need scans and specialists and to complain lightheartedly about your annoying fucking brain. Then, someday soon, too soon, the brain will stop seeing anything at all.

Her father’s diagnosis is explained to her in the middle of Melbourne’s fourth and fifth lockdowns. One unremarkable Thursday morning, her big sister—also living nearly 17,000 kilometres away—sends a quick message to their sibling WhatsApp group to ask if they are free for a chat that evening. They are very close and these family calls are normal for them, yet she spends all the hours of their time difference weeping. She tells her concerned housemates that her life is about to be upended and arms herself with multiple bottles of red wine. Later she googles whether there is an animal part of human nature that senses when your kin is in danger because she knew there was something wrong with their dad. He is sick. The back of his brain is shrinking. He is losing his memory and gradually going blind.

She starts to research this disease obsessively. A study by University College London’s Institute of Neurology delineates PCA in stages. Stage one is normal function—the disease is there but has yet to announce itself. Mild changes will be noticeable in stage two; certain tasks are tougher but achievable. He thinks his eyes are simply playing up and, if a bird has flown into your head at full speed, this damage is accounted for. He sees an ophthalmologist who cannot determine the source of this trouble. He admits he needs help with his computer and learns how to use Siri’s voice-to-text. Stage three is when he stops driving entirely. She does not recognise this as a symptom because he lives in inner London and no one needs a car in that city. But he becomes clumsier than usual, starts to pause mid-sentence to find his words. The man always with a book in his hand tells his family that he has stopped reading.

She learns from Dementia Australia that handwriting, typing and mental arithmetic will become complicated and this will happen early. Spelling will be difficult and he will be unable to judge distances. Cooking for himself will be hard because holding a wooden spoon will be hard. Eventually he will struggle to wave to her on video calls and some days he might put down his glasses and be unable to find them again. By the time international borders open he may only recognise her by her voice. She learns that it is a disease studied in England more than anywhere in the world and is grateful that the experts are where he is. His memory will be the last thing to go but she will notice signs of this degeneration from the moment he is diagnosed.

He calls her to complain that his sight has been especially frustrating lately. She asks him what his eyes see now because she wants desperately to understand how he experiences the world. Everything is pink and green, he says on the phone. She wonders what it is like to wake up and see an entirely pink bedroom, to boil your green kettle, to see the sofa you know is blue suddenly change colour. He tells her that he has memorised his credit card number so he doesn’t have to read the small discoloured bumps on plastic but, when trying to use a food delivery app the other day, he accidentally ordered two meals instead of one. Although he maintains that his vision is the problem and his memory is fine, he has told her this story before, the first time the day after it happened and again weeks later.

She joins a support group on Facebook for people with dementia and their families. She makes a post asking if anyone else is loving or caring for someone with PCA. She gets teary when she checks her notifications a few hours later and sees that a handful of people have heart-reacted to her plea for this connection. She cries when she remembers the rarity of PCA and how difficult it will be to find others experiencing this disease. Many of the posts are about people much older than him but she starts to question whether she should have been prepared for the possibility of illness. He is sixty-eight and more research tells her that PCA presents at an earlier age to typical Alzheimer’s. This knowledge is a small consolation; it was reasonable for her to assume that there were oceans of time left with him.

He has now reached stage four. He knows the word he is trying to say, the item he is trying to pick up, the task he is trying to achieve, but often he is unable to do so. Her sister brings him to her home for the weekend and notices him get lost from room to room. He tells her he does not recognise faces on the street anymore. The polite Englishman has informed his neighbours of his condition so they know he is not being rude if he walks right past them. This also makes films and television hard to follow; he cannot distinguish between Hero 1 and Hero 2 but says he has learned to deal with this now. For people living with typical dementias, this awareness of their illness declines at a similar speed to other brain functions, a small kindness afforded to the afflicted.

They are not yet at stages five or six. The intricacies of these stages she cannot bring herself to learn, not yet, although she knows he will need assistance walking and dressing and eating. His memory will be episodic and his recollection obscured. His language skills will be impaired. There will be prominent blindness and the possibility of seizures at the end. She clings tightly to the belief that they have many years until stage seven. Lightyears, please, give them lightyears, from what happens when the stages run out. But she knows there is no cure, that doctors will treat the symptoms of this disease and manage his pain but they cannot give him back his sight, they cannot give him back his life. She knows that it is terminal.

*

The last time her dad saw her was 9 October 2019. There is a gap in her journal on this day because despite her best efforts at keeping a diary she did not foresee it as something worth writing down. She was flying alone from Heathrow to Melbourne after visiting London for her brother’s wedding and staying a month with her father to try and make up for the vastness of time she had lost with him. He saw her off at Paddington Station and she was in a terrible mood because they were running late and she was anxious she would miss her train and then her flight. She was curt with him. She was wearing pyjamas and her short curly hair had grown and looked like a small animal sleeping on the top of her head. The scene is ridiculous and she still struggles to believe that it is the last he will see of her. Noah Baumbach could have written it.

Of course, she did not know then all the words she knows now: daily case numbers, border closures, rising death tolls, travel permits, hotel quarantine, vaccination targets, restricted movement, state-wide lockdown. Back then her life in Melbourne was hollow and she thought she might move closer to him the following year. She did not know that in a few short months the entire world would shut up shop, that international travel from Australia would still be unthinkable a year and a half later. She did not know that people would be denied exemptions to leave the country for weddings and funerals and to witness those last moments of life. She did not know that it would cost her $3000 in quarantine fees to come back home. And she did not know that he would escape this deadly virus but still get sick, that she might miss the last two of his lucid years.

From the other side of the world, she listens to him speak about the Alzheimer’s support group he is attending via Zoom and the nice woman from South Carolina who runs it. He recounts the jokes he told that made the group laugh and he tells her about the lumbar puncture he has coming up, an operation that will indicate how far this disease has progressed, how long he might have left. At first he misunderstands this extraction of spinal fluid and thinks he is having surgery on his brain. He rings her to ask where all the little bits go when the drill makes a hole in your skull and they laugh about these splinters rattling around in his head like an itch impossible for him to scratch. She tells him she is grateful for his sense of humour and without missing a beat he says, what are we without it?

It has been hard for her to find guidance on losing someone in real time. Grief after death is exceptionally tragic but exceptionally ordinary and there is limited space, limited time, for those with loved ones who are still here but not really, not wholly. She searches for books and podcasts and interviews with professionals that might help her to comprehend this type of bereavement. She is angry that, of all the thousands of brutal diseases, he has something so uncommon. She feels lucky to have four siblings to share in her grief and she knows it is wrong to wish that this was happening to anyone but them. She watches her friends flinch when she brings up her dad’s illness and she realises there is no social custom for this type of loss. She wonders each day whether she will sit with this suffering until he is dead and it is a mourning universally understood.

*

She has started to notice people looking at her hands. There is one long, thin line on the top of her right from an intentionally dramatic cut as a teenager. A burn mark from a drunken incident with an oven and a casserole dish on the top of her left. In the bulk of her fingers and the spread of her palm she sees her father’s hands. Like her hair, she carries his physicality with her, and when she looks in the mirror she is grateful that bits of this man stare back. His illness is now present on her own body: her nails kept short, her cuticles torn and fleshy, frequently rimmed with blood. Half of what made her is now broken and she picks and scratches and tears at her skin whenever she remembers this fact. They talk on the phone more often now, their conversations longer and more digressive with each call. But when they say goodbye and are about to hang up, no matter his health or his memory or his eyes that day, he infallibly says, Don’t worry about me, kid. I’m feeling good. I’m not going anywhere soon. This chat has truly made my day. I do hope I remember it in the morning. Haha. Lots of love.

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