Navigating the sensitivities of brain donation
Getting to the heart of the grey/white/pink matter.
'We need their brains': donating to the brain bank in search of a dementia cure
Outlet: The Guardian, 14 November 2018
Length: 1750 words
Turnaround time: 10 weeks
Number of interviews: Four
“I really hope that this is the brain that will get us across the line.”
This feature for the Guardian went behind the scenes at the Sydney Brain Bank, speaking to the scientists who work there, conducting research on the causes of neurodegenerative diseases such as dementia, and the families of those who have donated their brains for research.
Idea
Early in 2018, the media department at NeuRA (Neuroscience Research Australia) – an independent neuroscience research institute based in Sydney, Australia, where scientists work on everything from falls prevention to brain mapping – invited me on a behind-the-scenes tour.
One lab we visited belonged to the Sydney Brain Bank.
Standing amid the gleaming white and glass space, which looked just like every other laboratory I’ve been in, Brain Bank director Dr Claire Shepherd explained about the bank’s donor program.
Donors are people who have been diagnosed with a neurodegenerative disease, such as dementia or Parkinson’s disease. They register as a donor, usually fairly soon after they receive a diagnosis, and are followed up at regular intervals throughout the remainder of their life, however long or short that may be.
When a donor dies, one of the first calls the family makes is to the brain bank. Staff are equipped with pagers and are on call 24/7 so they can collect the donor’s body, take it to a mortuary so the brain and spinal cord can be retrieved quickly, then ensure the body is returned without interrupting the normal process of grief and burial.
The image of those precious, fragile organs being retrieved with great care and respect but also great haste captured my imagination.
I pictured the story in my head as a series of black and white snapshots: the brain bank staff member going to meet the donor after their death, transporting the body to the mortuary where the organ retrieval takes place, the mortuary, the brain being brought to the brain bank. I imagined myself going along with that staff member, and bearing witness to that process.
With that movie playing in my head, I pitched the story to the Guardian features editor Lucy Clark in August 2018, really selling the potential for some powerful images. She loved it.
Of course, things never quite turn out how you hope.
Why now?
Brain banks were very much in the public consciousness around this time. The Australian Sports Brain Bank had launched in March 2018, amid growing awareness of the impact that repeated concussions have on the brain and the long-term health consequences for elite athletes.
I was apprehensive that the story might be a bit much on top of all the coverage the sports brain bank had received. But I wanted to explore the human side of brain banks; not just the donors, but the scientists who work with the donors and with their donated tissue. I was also fascinated by the whole process of brain donation; who does it, what happens to them, how the tissue is handled, and what scientific research it enables.
Where to start
While the Sydney Brain Bank initially had been keen to participate in the story, we hit a snag that almost sank it before it set sail.
There had been some recent coverage of the brain bank’s work that was quite matter-of-fact and clinical. The team there were worried that terms like ‘slice’ and ‘cut’ in descriptions of how the brains were handled would spook potential donors, and were wary of more exposure where they couldn’t manage the language.
I had to work hard to convince them that I would approach it with sensitivity, while also reserving the right not to show them the entire copy before publication. In the end, I agreed to check Dr Claire Shepherd’s quotes back with them as a compromise.
Interviews
As well as brain bank director Claire Shepherd, I wanted to speak to one of the staff – Dr Andrew Affleck – who goes on those call-outs. I was also keen to interview someone who had either signed up a donor or whose loved one had donated their brain.
The NeuRA staff set up an interview with Lucille Bloch, whose husband Keith had been a donor when he died from frontotemporal dementia. Lucille was a strong advocate for brain donation, and had signed up as a ‘healthy’ donor.
I also knew Lisa Webb – whose husband Bob had donated his brain – through friends and had briefly met Bob before he died.
I arranged another visit to NeuRA for a more comprehensive tour and to interview Claire, Andrew and Lucille on location.
It was an extraordinary day.
One moment that stayed with me was standing in the room where the preserved brains are stored. It’s a carpeted basement room filled with shelves and shelves of plain white plastic buckets (which Claire was somewhat apologetic about, but she said they were the best storage receptacle), in library-style compactus.
It was warm and still and silent. There must have been hundreds of donated brains in there, and I had an overwhelming sense of being in a room full of people, deep asleep. We spoke in hushed tones – or maybe only I did. I didn’t want to disturb their peace.
The second moment that came to define the story was during the interview with Claire. She was a great interviewee: generous with her time, thoughtful, articulate, and clearly took her role and responsibilities to donors and their families very seriously, and cared deeply about them.
At one point, I asked what the brain as an organ meant to her. She replied, “A person”. She spoke of how important it was to de-identify the tissue for ethical reasons, but also emotional ones.
Then she mentioned that the daughter of a donor had sent in a home-made booklet, after the donor’s death, detailing the donor’s life when they were younger. At this point, Claire paused, then said, “reading that, and then having the brain…” Her voice broke, and she had to stop and collect herself.
It was an intense moment, and gave me a glimpse into the profoundness of what it means to do this work, and also to be a donor that enables this work to be done. It also steered the story into something much deeper and human and emotional than I had originally set out to write.
Writing
I often write features with visual scenes in my head that I want to capture in words. That was even more the case with this story, because it was so much about people and place.
Unfortunately, my hoped-for ride-along wasn’t possible, and in the end it also wasn’t possible for a photographer to attend a collection of a donation. It was logistically and legally too complex, as the photographer would have need access to locations such as the mortuary, where there are privacy issues (amongst other things).
That was disappointing, but made it even more important for me to create those images with words.
When I interviewed Andrew Affleck, he mentioned he had been out for a retrieval the day before, in the morning. I asked him in extensive detail about what a retrieval involved, even down to exactly how the brain and spinal cord were packed up for transport, and where in the car the container holding them was placed for their trip back to NeuRA.
I also asked about his emotions and thoughts while he was on a retrieval, and what it meant for him to do this work.
A check of the weather in Sydney that morning he had gone out, and it had rained quite heavily. I was able to picture his journey that morning through the wet Sydney streets, precious cargo on board, what was going through his head, and that gave me enough to build up the scene that became the lead for the story.
I didn’t delve as deeply into the science as I would have liked, as I only had 1700 words and wanted to focus on the human-interest angles. I was also acutely aware of my choice of words while writing it, keeping in mind that donors and their families might read the story.
Aftermath
When the story came out, I was a little anxious about how the interviewees would feel about it. NeuRA said they were happy with the end result, and I can only hope that Lucille and Lisa felt I had done justice to their stories.
Lessons
From pitching to publishing, this story took around ten weeks, mainly because of the negotiations around access and photography. With hindsight, I should have taken more time to work out the photography options before pitching, because my ambitions for the story didn’t match up with the practical realities.
The Guardian’s photo editor and photographer Carly Earl took some beautiful, thoughtful images of the people in the story, so the end result was lovely.
The interview with Lucille was also a learning experience.
Some years before, I wrote a book about death in which I interviewed scores of people who had been with loved ones when they died.
Those interviews had taught me a lot about how to create a space for people to tell difficult, emotional stories. I like to think it taught me to be better at just listening; not trying to soothe or reassure or take up space in the conversation by saying things to ease my own discomfort and emotion, but just sitting with the person and letting them speak at their own pace.
One of the NeuRA staff sat in on the interview with Lucille, which I understood because they wanted to look after her and make sure she was treated with care and respect. But during the interview, I could see their discomfort with Lucille’s honesty about her husband’s disease, and with her grief. They wanted to make her feel better, feel less alone, to share some of their own personal experiences in the hope that a burden shared is a burden halved.
My instinct was simply to let her tell her and Keith’s story. I admired her courage and forthrightness in being so open about their experience.
The process also showed me the value of getting out from behind my computer and visiting scientists where they work. I have since written another story from that initial tour – a profile of neuroscientist Professor George Paxinos – so I should do these more often.
This is my second post in this series. If you have any feedback, questions or comments, please get in touch.