It is impossible to describe the deep frustration — impotence even — that comes with watching someone close die from a disease you have spent years researching.
It doesn't come close to the fear and turmoil of those facing their own mortality. But staring such a personal emblem of failure in the face is a special kind of torture few could know.
A simple, entirely reasonable question from my young daughter crystallised this uncomfortable insight for me.
Why couldn't I just go to the lab and make some medicine to cure her grandmother of the lung cancer slowly killing her?
And who could blame her for asking? My kids accept without question the familiar justification for my frequent absences with work: "Dad's trying to discover new medicines to make sick people better."
Yet here was their beloved Nonna dying, and there was nothing I, or anyone else, could do.
Add to this emotional turmoil the erosion of funding, public rejection of expertise and a political climate unfriendly to science and you can see how even the most enthusiastic scientist might be sapped of motivation. What keeps us going in this climate, and why should anyone care that we do?
Medical research: It's personal
Medical research can be challenging and exhausting. I've seen countless colleagues sacrifice family, relationships, and mental health on the dais of scientific success. We forgo time with our own families so that others less fortunate get to spend more time with theirs.
Almost everyone I know in research has a powerful personal motivation for being there.
Like me, most of my colleagues have lost parents, siblings, partners or friends to the very diseases they work on — if they haven't been patients themselves. We know the work we do today likely won't help our loved ones, but the knowledge that it will help others in the future is motivation enough for most.
Survival rates for many cancers have been increasingly steady for years — a direct outcome of the huge research efforts directed into better understanding the disease and devising better treatments.
The years of human life represented by those statistics is something we are collectively proud of.
But those broad improvements aren't always reflected at the individual level, particularly for diseases like lung cancer and pancreatic cancer — where we haven't really made much progress at all. For conditions like Alzheimer's and Motor Neuron Disease, the picture is even bleaker.
'Paleo prophets of false hope'
When medicine runs out of answers, as it did in my family, it creates fertile ground for paleo prophets of false hope.
I bit my tongue as well-meaning visitors tried to help. Their motivations were beyond question, but precious final hours were wasted on cookbooks full of wellness word salads and toxic guilt trips preaching positive thought as a cure. It is hard to describe the contempt I feel for the vultures selling fake cures and conspiracies.
Who was I to criticise? As a very obvious symbol of the failure of modern medicine, my opinions no longer held any weight. Science, with its qualified language and reliance on evidence, just can't offer the same positive narrative of hope.
Like any scientist, I am afflicted with a visceral sense of curiosity. The challenge of working on big problems like cancer and neurodegeneration is almost seductive, and makes a powerful intrinsic motivator.
But my growing frustration started to cloud that motivation with anger, impatience and sadness.
I became impatient with a system that has me spending months every year writing mostly fruitless applications for research funding, wasting hours filling out useless paperwork.
Each year, Australian medical researchers spend an estimated 550 working years — equivalent to a combined salary cost of $66 million — applying to our federal funding scheme (the National Health and Medical Research Council). This system is so stretched that less than 15 per cent of funding applications were approved last year.
Rejected funding applications are more than just intellectual disappointment; it is time stolen from actual work tackling diseases claiming people I care about, magnifying the frustration.
Would we ask our Olympic athletes to spend huge chunks of time repeatedly writing training plans and tearing them up, instead of training and competing?
'Friends and colleagues are leaving in droves'
From within, it feels like Australian science is being decimated. We are turning out ever more PhD graduates but they are finding it harder to find and sustain research careers.
Friends and colleagues, long frustrated by having more ideas than funding, are leaving in droves; in the past year alone, at least six colleagues have either left research or moved overseas.
Even those of us remaining are forced to have one eye on the exit and a good plan B. Economic models don't capture this aspect of policy discussions around the STEM workforce in Australia. The decision to embark on a research career is not driven by financial considerations.
This problem has been looming for a while, but has really started to bite in the last two years. And it skews the makeup of our research workforce,hitting women and younger researchers particularly hard.
And yet research secures our health and prosperity against an uncertain future. Failing to nurture and support research will have impacts far beyond the lives of scientists like me.
A report by the Chief Scientist estimates that science underpins more than a quarter of Australia's economic output, and 10 per cent of total employment.
The last 30 years of advances in biological sciences alone drove 5 per cent of economic growth (roughly $65 billion per year) and decreased the burden of disease by 18-34 per cent, representing health improvements worth up to $156 billion every year.
There's no 'quick fix'
With science such an integral part of our everyday lives, how has its value been so undermined? The benefits of science aren't always immediately visible and predicting or appreciating future risks is difficult. So in some ways the problem is one of near-term thinking.
Still, there is no quick fix. More funding would help but it is not the only solution. We need to convince voters and politicians to see research funding as an investment, not a cost.
We should demand a research ecosystem that harnesses the enthusiasm of researchers to enable and encourage innovation, rather than sucking the life out of its most valuable assets.
Scientists have a responsibility here, too. Politicians will support and fund us if there are votes in it. We have to engage people with the outcomes and impact of our work to reverse the erosion of confidence.
So how did I navigate my way out of the distracting, corrosive fog of introspection?
Triggered by the revelations of two friends with serious illness, I found a way to harness the melancholy, anger and frustration for motivation to work harder and smarter.
I rediscovered my intrinsic drive to understand, and an enthusiasm to help people make better-informed decisions by sharing this understanding of complex science.
And some time in the mountains reminded me of an important mental discipline: when skiing or riding through a forest, your body follows your mental focus — you have to train yourself to focus on the gaps, not the trees.
Bouncing off trees is painful, and it stops you getting down the mountain. I realised that neither were helping me, or the people I care about.
Dr Darren Saunders is a Senior Lecturer in Medicine at the University of New South Wales. This article first appeared on ABC News Online.