In August I participated in a Macquarie University webinar, hopefully titled ‘A World Without MND’.
A recording is now available here: https://youtu.be/wrivF56tfX8
After introductions by Prof Dominic Rowe (aka my neurologist, Dom), Macquarie, there were presentations by:
- Prof Ian Blair, Macquarie, on genetic discoveries (starting approximately 7 minutes into the recording)
- Prof Justin Yerbury, Wollongong, on proteostasis and implications for therapy development (23m)
- Prof Julie Atkin, Macquarie, on disease mechanisms (36m)
- Me (wearing my Sydney School of Health Sciences hon hat), on living with MND, text pasted below (48m)
- Dom, on trials to slow and stop MND (58m)
Back when I was tethered full time to a bi-pap machine and losing capacity for my voice to be understood, I couldn’t imagine being able to do any more talks or interviews. I am so thrilled that technology has allowed it, and to Justin for inspiration – even if Ryan needs to work on his comic timing (Communication).
I was even able to say a few words yesterday as the human interest component of Channel Nine’s news story on the latest research “breakthrough” – one of many, many needed towards achieving a world without MND.
Living with MND
(Talk for Macquarie University webinar, A World without MND, 26 August 2020,
Hi, I am Kirsten Harley, an honorary lecturer in the Faculty of Medicine and Health at the University of Sydney, and one of Dom’s patients.
I am speaking with the help of the NeuroNode strapped to my wrist and my synthetic voice friend Ryan. You can blame Ryan for any uncouth language.
This evening I’m talking about my experience of living with MND. I will be drawing from my paper with Karen Willis, ‘Living with Motor Neurone Disease: An Insider’s Sociological Perspective’, published in Health Sociology Review last month , as well as my blog, kirstenharleymnd.home.blog.
Eight years ago I was nearing the end of a post doc at the University of Sydney. My husband, Densil, and our six year old daughter, Kimi, had flown home from Buenos Aires after a delightful family holiday. I was walking to a cafe to prepare for a conference session on health care choice. I tripped, and fell flat on my face.
There were other falls. And cramps when I stretched my quads after exercising. A few months later, after Karen Willis, Fran Collyer, Stephanie Short and I had been awarded an Australia Research Council grant to examine how people navigate healthcare, I noticed tired cramping hands. Then I fell, once, twice, three times while walking to a post-conference dinner with a friend.
I knew that my body was seriously misbehaving.
I saw my gorgeous GP, Anna, the following week, and after a careful examination and blood tests she rang Dom. His new colleague was able to see me the next week and initiated a series of tests.
On Monday 7 January, 2013, Densil and I held hands in the neurologist’s office and were told that I have motor neurone disease. We were told that life expectancy varies but typically people die within two to three years.
I thought of Kimi, our precious 6 year old, soon to start second class, and my world crumbled. The floor, walls, ceiling, our world – everything – crumbled and fell away (Six years!).
We were, of course, shocked and afraid as we started to process the news. As we tried to comprehend that I would lose the ability to move, to speak, to swallow, to breathe, with an unpredictable order and pace of losses. As we started to tell family and friends, in difficult, sacred, love-sharing conversations. As we snuggled in bed with Kimi, and explained that MND is not the kind of disease that doctors can fix, but scientists are working very hard to understand and cure it.
There isn’t a single right way to live with MND. Some prefer solitude. Some like to fight. Some keep working. Some hit the road. Some pretend it’s not happening. Some get blindsided by its terrible rapid progression.
Personally, I have sought out information and stories and community. I have learned to accept the reality of MND and generous offers of help. I have become something of an unintentional activist, and been so proud to watch Kimi become an amazing awareness raiser (Harley & Willis 2020: 220-21).
We also instinctively took on Dom’s advice – take things week by week and try to make the most of each day – and started a series of memory-making holidays with a glorious Tasmanian long weekend of friends, raspberries, penguins and poo-machine art.
As I tried to make sense of my diagnosis, I turned to our research project, ‘How Australians Navigate the Healthcare Maze: The Differential Capacity to Choose’.
Theoretically, we developed the sociological notion of healthcare capital to understand how the different kinds of resources, or capital, available to people might open and close different pathways through Australia’s healthcare maze (Collyer et al. 2015). Following sociologist Pierre Bourdieu (1986), we understood capital as multifaceted, including the economic, cultural, symbolic and social. We added the significance of place in the context of Australia’s healthcare system, where access to healthcare resources is shaped by one’s location (Lewis et al. 2018).
The gloriously truth-telling Macquarie Neurology nurse who saw me on that first day aptly described MND as “a shit sandwich of a diagnosis”.
MND truly is a shit sandwich!
It has taken from me arms that could hug, turn pages and swim. It has taken legs that could run, climb stairs and kick off blankets.
It meant I had to ‘retire’ at age 45.
It has steamrolled over our family life, rearranging our home, schedules and activities, and stealing our confidence in my longevity.
It has killed our friends.
It has taken my voice and breathing.
It means I need others to get me out of bed, to shower and dress me, to feed and move me, to scratch my itches and keep my machines running.
And I won’t talk about the actual shit!
It has been a shit sandwich, for me, Densil and Kimi, our families and friends.
But, in reflecting on our project about how people navigate healthcare, one of the things I realised, in a very real and personal way, is how much more of a shit sandwich this would be for me if I didn’t have my family and friends. I’ve learned, firsthand, how each of the elements of healthcare capital has made a difference in navigating this challenging journey (Harley & Willis 2020: 215).
We’re lucky in Australia to have an excellent public health system, which has offered me free, life-saving emergency care, and universal Medicare and PBS. The support of MND NSW and similar organisations helps level out the playing field and, unfortunately only for people under 65, the NDIS can make a big difference, including funding my round the clock care (The NDIS). But in terms of economic capital, I’m also aware how much harder this would be if we didn’t have sufficient economic resources to pay for things like out-of-pocket costs and home adjustments (2020: 215-16).
My cultural resources, boosted by years of university education, and specifically my research and teaching in health sociology, have helped me to make sense of what is happening: to find and read the research, to understand the statistics, to appreciate the different roles of the team of health professionals involved in my care, and to theorise and write about the experience (2020: 216).
I can see that place has made a huge difference. Living in a part of Australia where I have access to good health resources contributed to a relatively fast diagnosis and led me easily to my exceptional neurologist, Professor Dominic Rowe, and his fabulous multidisciplinary MND clinic at Macquarie University close to where I live.
Dom exemplifies what makes an excellent health professional. Clinical expertise is obviously critically important. But it is equally important for health professionals to recognise the limits of their knowledge, to understand that knowing the disease is not the same as knowing this particular person with the disease, and to be comfortable asking questions and seeking advice, collaborating respectfully with both colleagues and the patient and their family (2020: 216-17).
I can see that this would be harder without the kind of symbolic capital that facilitates comfortable interactions and mutual understanding with health professionals (2020: 216).
Most of all, I’ve experienced firsthand the way that social capital, the network of wonderful family and friends around me, provides access to a collective wealth of emotional and practical support, expertise, advice, knowledge, contacts, stories, research and experience that overshadows and leverages my own personal resources (2020: 216).
Even though MND is a shit sandwich, I have an amazing, kind, strong daughter and husband. And the love, care, support, coffee, humour and joy that I receive from the beautiful family, friends, carers and health professionals around me help make my life very much worth living.
Bourdieu, P. (1986) ‘The forms of capital’, in J. Richardson (ed.) Handbook of Theory and Research for the Sociology of Education, Greenwood Press: NY.
Collyer, F., Willis, K., Franklin, M., Harley, K. & S. Short (2015) ‘Healthcare choice: Bourdieu’s capital, habitus and field’, Current Sociology, 63(5): 685-99.
Harley, K. & K. Willis (2020) ‘Living with motor neurone disease: an insider’s sociological perspective’, Health Sociology Review, 29(2):211-25. https://doi.org/10.1080/14461242.2020.1789487
Lewis, S., Willis, K. & F. Collyer (2018) ‘Navigating and making choices about healthcare: the role of place’, Health and Place, 52: 215-20.