Faced with the choice of finding out how you might die – what would you do? Lillian Hanly set out to make a film about a choice and found that life, no matter what, goes on.
Growing up I always knew my grandad was a little bit different. He had swagger. He was expressive and unique and cool. He was an artist and a teacher. My brothers and I spent a lot of time with him, partly because my parents had separated but also because we were lucky enough that he lived just around the corner. This meant that his way of viewing the world was the way we learned to view the world: through a lens of colour and energy and a love of life. He, and my mum after him, would gesture with great enthusiasm at a broken tree branch or shifting clouds or even the force of the wind, marvelling at the way things worked. But the movement, the physical way in which my grandad moved, could seem increasingly odd as he aged. He had Huntington’s Disease, a neurodegenerative genetic disease that can be fatal. His expressive movement was something he had all along – well before he showed any actual Huntington’s symptoms – but it seemed the disease made that movement more intense.
I was born in 1994, the year after the Huntington’s gene was isolated. This meant that someone could be diagnosed with the disease from a blood test. People may have been suffering from it for generations, but up until this point there was no way of knowing the specific cause. My grandad, therefore, was diagnosed very late in his life. After a lifetime without any knowledge of what Huntington’s Disease even was, my grandad and the rest of my family suddenly had to face it. Even then we didn’t understand what it really meant. Maybe ignorance was bliss. Maybe my grandad was better off for not having known? I sometimes wonder what he would have thought if he’d known much earlier.
Now I can tell you this off the top of my head: Huntington’s is a disease caused by a mutation in a gene that every person carries. People with the genetic mutation develop symptoms and can eventually die from certain complications. The symptoms vary from person to person, even from sibling to sibling, but they affect people physically, mentally and psychologically. Physically, someone might have involuntary movements like twitches or jerking, or difficulty with voluntary movement that looks like clumsiness or stiffness. There’s a gradual loss of cognitive abilities such as memory, concentration and judgement. You can also develop depression, mania, irritability, apathy and personality changes. It means not only do you lose control of your body physically, you can lose a sense of who you fundamentally are. Eventually, in the later stages of the disease, you can no longer care for yourself.
I was in high school when I found out that my mum also had the disease. She took the test in her 40s and found out she’d inherited the mutation from my grandad. This doesn’t always happen: a child has a 50-50 chance of inheritance. It always seemed bizarre to me that it was a simple either/or. Mum took her time to process the information, and as she eased us into understanding what this meant for her future, I also came to understand that I, as her only biological child, was also at risk of inheriting the disease. The thing about a genetic disease is that it doesn’t just threaten you, it threatens those who come after you. If you have the genetic mutation that leads to Huntington’s disease, your children flip the same coin, run the same risk, as it is with their children.
The shadow of the disease stretches over not just your life and death but all of your plans and dreams in between. Is it right to plan for children, knowing that they have to face the same either/or? And how do you plan for your own life? Do you take the test, with those 50-50 odds, knowing that if you have the disease, you will one day lose control and lose your identity? Or is it better and safer not to take the test at all? In a way, once the test says you have Huntington’s disease, symptoms or not, you have Huntington’s disease. In the same way, if you don’t take the test perhaps you don’t.
This should have been a daunting prospect, but the way I saw Mum engage with it, her process of grieving and acknowledgment and facing her mortality head-on was powerful and inspiring. I knew this was informed by my grandad’s view of the world and I’ve always wanted to capture and share that sense of wonder. Long before he had a connection with a genetic disease affecting his cells, my grandad – Pat Hanly, the painter – was painting works known as the “molecular creation” series. He’s quoted as saying, “the works are based on the idea of the divine molecular event occurring in all things even in the void, where creation begins”. It’s this fascination with energy that would lead him also to say that a “still life” is a ridiculous contradiction in terms. His paintings depict this not-still life and it is inside that world in which my mum was raised; to love, and to hold in wonder the energy around us.
Just as everyone is unique, and has their own way of being in the world, everyone has a different way of approaching the disease. Knowing about and understanding the disease meant that I was able to talk to people about it, and I explained to my friends what it meant in case they were confused by the way Mum sometimes acted. Mum did the same with those closest to us, but she did not share the information publicly. Much like my grandad she has always been expressive and enthusiastic both physically and emotionally. She is certainly not, and never was, what you’d call normal. She decided that, actually, she didn’t want people to dismiss her weird (read: awesome)-ness as the result of a disease. She knew she was different, and she celebrated it even when, as a lecturer, someone Snapchatted her in class and joked about their teacher seeming drunk because she moved and spoke a little differently. Mum encouraged difference and still today reminds people that it is OK, regardless of the form it takes. In her own way Mum neutralised the power of the disease by informing me, and taking ownership of her full self – including that particular gene.
I am now 27 years old and in the space of 28 years, knowledge around Huntington’s disease has increased exponentially. The movement around it is growing as well, and the search for a cure is well under way. In the last 30 years, Google has granted individuals instant access to a vast medical knowledge base. Social media means complete strangers can share their experiences of the disease. YouTube has countless videos of people with the disease, or people talking about the disease. Despite this, it doesn’t necessarily make it any easier to make the decision about getting tested.
You can only get a test for Huntington’s Disease once you are 18 years old. Almost 10 years on, I still haven’t. I don’t know what my gene status is and until now I’ve been OK with that. Once you take the test you cannot untake it. Many decide they simply don’t want to, ever. Would you want to know how you might die? As I get older, more options are available to me than my mum’s generation: IVF, while a challenging process, offers certainty that your children at least won’t have the mutation, and there are trials going ahead for different treatments. With more options come more unique and difficult decisions. What if your IVF attempts are unsuccessful? There is a financial barrier to endless attempts. Are you morally wrong to conceive naturally? And where does gene selection stop? If one is to begin at the Huntington’s gene, what more can be selectively removed? Before I can engage with these treatments and decisions, I’m faced with the most critical choice of all – to take a test and find out whether or not I have the disease. All the while time is running out if I wish for my future child to meet its grandmother.
When I set out to make this film, my goal was to explore and share the huge challenge that faces almost everyone in the Huntington’s community. When the gene was isolated in 1993 and people began to be diagnosed, most of them were already middle-aged. Young people today are the first generation to have reached adulthood knowing that decisions about the Huntington’s test are in their future. A blood test is a simple process. The results have the power to shake your very foundations.
People said I was brave to make this film, but I don’t think I’m especially brave. In fact, not long ago this might be seen as stupidity: publicising one’s diagnosis is a risky business, given the stigma and the effect it can have on your occupation or otherwise. There always remains a risk of missing out on certain job prospects if your diagnosis is public, even if such actions are illegal. You’re at risk of not receiving life insurance. It’s not exactly something you want to share on a first date, but in building a life with someone, your partner is signing up to a life with the disease as well. Some of our community cannot physically hide it at all. One time, my mum was at the airport for an early morning flight, having had no alcohol, and a flight attendant told her she needed to sober up before boarding the plane. I believe the more we speak out the more people can understand that our families might just have a slightly different gene. If there is bravery here, it is not mine alone. In making this film I hoped to draw attention to the agonising choice of finding out whether your own body will begin to work against you one day and at the same time raise awareness for our community. It was also a record of my whānau and the way we have approached these conversations.
I asked those who took part in this film, both on camera and as part of the research process, why they did so and what they hope people take away from it:
Micheal Hanly (HD positive)
“There haven’t been many times in my life where you can positively contribute in a meaningful way to a good cause, to something like the HD community. It’s nice to think that if someone with a serious illness can see the way we cope with it then they can too, and that they shouldn’t be ashamed or embarrassed about it. I hope that by the time my son is old enough to see it and understand it that he will see who we were before we changed … [This film gives] exposure and insight to the power of knowledge and how it can shape a life… And that facing hard decisions doesn’t mean it ruins your life, but how you react to that knowledge will change and strengthen you as a person.”
Amber Rhodes (at risk of HD)
“[The disease] affects all of us whether we carry the gene or not, and therefore is significant in what I hold to be a very special family unit… I am part of the story and it is a part of me, I cannot turn away from that and nor would I choose to… I hope [the film] can be part of a discussion for all families who face the prospect of loss through genetic disease, and enable a different perspective on it. There is no doubt that [the disease] has profoundly affected our family, and in different ways… I hope that this film brings hope and the possibility that situations such as ours can be faced with compassion, understanding, support and most importantly LOVE.”
Malvindar Singh-Bains (Huntington’s researcher)
“As a researcher working with donated human brain tissue from sufferers of HD I believe it is critical for the mainstream community to be aware of this condition as it drops the stigma and increases awareness of the complexities involved for the patients and their families. … HD is not just about the symptomatic patient, the condition impacts the whānau and those who are not symptomatic too. I also hope the audience understands that asymptomatic youth at risk battle with major decisions throughout life, and getting tested is only one of them.”
For every person with or at risk of Huntington’s there is a family going through that choice as well. Beyond them there is a community of medical personnel, counsellors, scientists and researchers who are working to support the HD community and find ways for people to live their lives as unaffected by the disease as possible, for as long as possible.
My hope is that this film brings many more people into the conversation, and gives them tools to use in situations beyond this disease alone. We must all make choices about death, but how we choose and how we fight to live is just as important. This story is bigger than my grandad, or my mum, or my family – or even a single disease: this story belongs to all of us.
Fifty Percent is part of the Loading Docs 2021 collection. For more visit loadingdocs.net