After This: Why I Wrote A Love Story About Death

By Kaitlyn Clare

After This is semi-autobiographical. Its central character, Annie, serves both as an extension of myself, and an homage to the three significant women in my family who have passed away from terminal illness and endured immense suffering on their way out.

The first, my beloved cousin Sian, was only 21 years old when she was diagnosed with Glioblastoma (the most aggressive type of cancer that begins within the brain). She was kind and vibrant, with a ready smile and exactly the sense of humor you’d imagine someone raised by an Australian mother and an Irish father to have. She was intelligent, wise, and her future was bright. Whilst on vacation in Bali with our grandfather, with whom she was very close, Sian began to get headaches. She deteriorated rapidly. Within weeks, she was dead - and her journey to death was brutal. Her headaches became overwhelming, bringing with them seizures, vertigo and confusion. Her disorientation became paralysis, and paralysis took from her the ability to speak, to eat, to drink and, in the end, to breathe. All these years later, I can see her in my mind’s eye, struggling to take slurps of her one last pleasure: cold, sweet Sprite, the straw held to her lips by her devastated mother - my Aunt, Kay. Sian died in 1994; I was 9.

Not long after that, my mother was diagnosed with breast cancer. At 14, she had lost her own mother to the same disease. Mum underwent chemotherapy and radiotherapy, and had a bilateral mastectomy. I’ll never forget what her chest looked like after that. Surgeries were less advanced, then, and reconstructions were less common. Her scarring was awful. Mum changed her diet, found God in the way that many agnostics and atheists do when they have little left to cling to, and drank potent concoctions of superfood powders that were so gluggy and revolting that she’d often vomit them back up into the kitchen sink.

She fought that cancer for years. Eventually, finally, thankfully, she went into remission. Steady medication, in the form of Tamoxifen, kept her in an okay place. Then, her doctors told her about a new and experimental drug that had had some success and, notably, caused lesser side effects. She agreed to stop taking the Tamoxifen and give the new drug a go.

We had a good Christmas that year. Annually, my parents would send a detailed letter out to their friends in lieu of a Christmas card, and the letter of 1996 was full of good news and hope. Dad went into great detail about how proud we were of my mother, how grateful we were for her recovery, and how excited and relieved we were to be able to move on and into a brighter future. 1997 started, and midway through Mum had a series of scans to check to see if her remission status had changed. Her body lit up like a Christmas tree. The cancer was back, and it had spread to her bones, several of her major organs, and her blood. All hope was lost.

She survived several painful months longer than expected, because she was determined to see me start high school - which she did. My first day of high school was January 28th, 1998. It was a new school for me, and it had an impressive uniform and a long history, and I was lucky to be being sent there (although I didn't necessarily see the perks of going to a strict all girls' school at the time). Dad and I stopped in to see her in the hospital on our way to school on that very first day, so she could see me in my uniform. I was 12 years old and full of anxiety so, as you can imagine, I didn’t particularly want to be there - I was more concerned with claiming a "good desk" in homeroom (one of my greatest regrets). However, she took me in, standing there awkwardly in my new blazer and shiny shoes and panama hat, and she beamed. She was so proud.

Not long after we left, she began sliding and, that night, unrecognizable save for her spirit, she died at the age of 44.

By this early point in my life, I had learned to equate death with horrific suffering, and I was terrified. I developed not only an all-consuming fear of death, but also of illness, of hospitals, of invasive procedures, and of separation from my loved ones. I was an adolescent girl who’d just lost her mother, who had no idea how to process it or grieve. I was also convinced that I would go down the same path as my mother, and my mother’s mother. Breast cancer felt like a family curse, and dying young was the likely outcome.

I began to live recklessly, as many people do when they’re in pain. As a teenager I quietly battled an all-consuming eating disorder, an addiction to over-the-counter diet aids and medications, and frequently made myself the target of predatory men. I still excelled academically and had a smile on my face most of the time, but I needed to be saved from myself - and I was, by Margie.

Margie was my extraordinary step-grandmother (my father, thankfully, remarried - my stepmother's name is Deb and she's a ray of light). She was an RN and, one day, having taken quiet stock of my appearance, she stood me on her bathroom scales, made me a cup of tea, then sat me down in her living room and let me talk. By that point, I was ready to do exactly that, and we went deep. We talked about suffering and death - what she had seen during her years of practice as a nurse, and what I’d been struggling to recover from as a young person. Somehow, we got to talking about voluntary euthanasia. She belonged to several right-to-die societies, and had been advocating for the legalization of assisted suicide for years. She didn’t believe that anyone who was terminally-ill should be forced to suffer any more than they needed to, or than they could bear. We don’t force that upon our family pets - why should we force that upon our family members? Shouldn’t a sick person, who is going to die anyway, have the right to choose a dignified, peaceful, and painless death? Shouldn’t the laws be more compassionate? She planted a seed, and my interest grew. I learned the theories and practices of Dr Jack Kevorkian and Dr Philip Nitschke.

In 2011, I visited MONA (Museum of Old and New Art) in Hobart, Tasmania (Australia). Melbourne sculptor Greg Taylor had an installation in the museum at the time, although I didn’t know that until I happened upon it. The installation was called ‘My Beautiful Chair’. It was based on the Deliverance Machine, created by Dr Nitschke in 1996 at the time of the world’s first right to die law, the Rights of the Terminally Ill Act (ROTI), of Australia’s Northern Territory (this law was overturned a year later). The Deliverance Machine is a laptop computer connected to a syringe driver. When the reservoir of the syringe is filled with a lethal drug, such as Nembutal, and an intravenous line is connected to the patient, the person can self-administer the drug. It was created to give the dying person the final say in when they would exit their life.

Greg Taylor’s installation offered a large, comfortable leather lounge chair, a Persian rug, and a standard lamp. A simple, familiar lounge room setting. It also featured a laptop computer with a software program that was triggered when someone sat in the chair. When the laptop started up, words on the screen bluntly stated, “If you press this button you will die.”

I pressed the button. As I relaxed into the chair, the screen described what would be happening in my body if I had been receiving the lethal drugs intravenously. The final screen announced, “You are now dead.”

As the best art often is, that installation was profoundly confronting. Haunting, even - I’m sure it frightened a lot of people. But, it was also peaceful. It made sense to me, this idea that someone facing an inevitable, debilitating, and often torturous death should be able to choose to sit comfortably in a familiar space, hopefully surrounded by loved ones, and end their life in such a gentle way. When someone passes away, especially before their time, great comfort is taken by those grieving them in phrases such as, “It was very quick” and “They didn’t suffer.” As strange and unnerving as it felt to be sitting in that chair, experiencing that installation (because the thought of death can be very frightening, no matter how we approach it), it ultimately felt like a realization of those exact, comforting phrases. It was quick and without suffering.

Until 2019, voluntary euthanasia and physician assisted-suicide remained illegal in all states and territories of Australia (it is now legal in two). Sadly, Margie became grievously ill and died before she had the option to control her death. She suffered from Buerger’s disease - a rare disease of the arteries and veins in the arms and legs, which causes blood vessels to become inflamed, to swell, and to become blocked with blood clots. Eventually, this destroys skin tissue and leads to infection and gangrene. Over the course of a couple of years, Margie had to have both of her legs amputated. By the time she passed, her fingers and arms had also begun to blacken. Her body was rotting while she was still alive. She lived in great pain, without joy, and had almost no control over her own life. She became severely depressed, withdrawn, and dependent on alcohol. As painful as it was for her family, who desperately wanted her to hold on, she wanted nothing more than to be able to let go.

Her last days were devastating. It broke my heart to see Margie - a lifelong euthanasia advocate, a nurse, a well-educated and rational thinker who understood the ins and outs of medicine and end-of-life care - unable to avoid the worst of her suffering by turning to an option that she, as an Australian, didn’t have.

I wrote this film at the end of 2019, after finally being convinced by my doctor to undergo genetic testing. The genetic testing was to confirm whether or not I had the same BRCA1 mutation that my mother and her mother had - the one that jumps your odds of getting breast cancer up to 87% and ovarian cancer up to 59%. As it turns out, yes, I do have the mutation.

All at once, Sian’s story, my mother’s story, and Margie’s story - all these experiences of grief, all those years bearing witness to the pain leading to an inevitable end - came flooding back, and the character Annie came to life. What would someone like Annie choose to do? What becomes the burden for someone like Liam, or the consequences?

After This asks these questions subtly and quietly. It is a sensitive and complicated subject. What the script (soon to be film) presents is ultimately a love story, and a slice-of-life glimpse into the unfair choices a young woman facing a descent into further suffering and the man who loves her have had to make. It was written to inspire reflection, compassion and empathy by contributing, in a small and beautiful way, to a much larger conversation about mortality and choice.

We are currently in pre-production and will be shooting the film in October 2021. If you'd like to learn more about After This and make a tax-deductible donation via our fiscal sponsors Film Independent, please visit our project page here. We are truly grateful for your support.

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Project website: afterthisfilm.com

Inquiries: info@thesheplab.com