07/06/2026
As some of you already know, I have spent time over the last six months writing another book. Whereas my last one dealt largely with the story of my first cancer and my life as a blind person, this one is primarily targeted at health professionals and carers, who are supporting people with life-limiting illnesses. I am also hoping that it will be of some use to family members and friends, and to people who themselves have these illnesses. I have wanted to write it because I don't think there is enough literature out there which talks from the perspective of the person who themselves is dying, and I have myself certainly identified what I believe are significant gaps in the services available to people like me, in the last five years.
So, my book (which will be out in the next few weeks) is called Help Us To Live While We Die, and has a lot of stories from both my own lived experience, and the lived experience of clients and friends whom I've met along the way. The main point that it is making really, is that when you receive a diagnosis of something like MS, cancer, MND, kidney disease, or a stroke, where there is time left to do it in, you are still living, while you die. It is true that you might be more certain of your death date than is the average person, but regardless of that, you still have bills to pay, family milestones to achieve, friends who need you to listen to their problems, dreams that you can still achieve.
So, my argument is that these are the things that we need to be able to talk about. We need to talk about these dreams, and see how we can help to make them happen. We need to keep people connected to who they were before this diagnosis. Just as importantly, we need to talk about death, not in hushed tones as is currently the trend, but just as we talk about life. As a very wise woman said to me just a few days ago, "when you talk about pregnancy, it doesn't make you pregnant", and the same thing can be said of death. If you talk about death, it won't make you die. We don't have words that help us to avoid "pregnant"; and yet when someone is dying, we come out with anything from "passed on", to "passed away", to "gone", "stepped off the mortal coil", or in the words of my Father who never failed to make me laugh "kicked the bucket". In fact, the person just died, and it doesn't need sugar-coating.
While I think we need to change these hushed tones therefore, I believe that this concept of living through doing, or through working towards our dreams, simply must be kept alive. As an example of what I mean here, most people in Melbourne will have been made aware in the last fortnight, of the death of AFL legend Neale Daniher. He died of Motor Neurone Disease just two weeks before the twelfth Big Freeze event at the MCG, something which he, his family and the AFL world have thrown their energy into since his diagnosis in 2013. As a disease that so often takes people out in the first couple of years, Neale fought hard and made it to thirteen years with what he called "the beast". He was no doubt buoyed up by what he was able to do; he raised $140 million with these events in an effort to find the cure for example. He was not able to save himself it is true, but as someone with pancreatic cancer myself, I can well relate to the feeling that there is purpose in it for us who cannot be cured, if it means that future generations might be saved.
It clearly took so much away from him, but he kept his sense of humour, right along with his sense of purpose, and his belief that it's not someone else's job to do things, but yours. When I have listened to old friends speaking about him over the days since his death, or to some of the young people whom he has mentored, it is not pity that I have heard in their voices, but respect for a job well done. He refused to let "the beast" define him, and it didn't. He was to me, a true example of someone who wrung every last ounce out of the life that was left to him, and lived while he died. He didn't look for easy ways out, like our Governor-General who plans to wear a wet-suit tomorrow at the Freeze. Instead, he asked for no concessions; his honesty allowing us to glimpse the pain and the continual losses he was experiencing (like to mobility and speech), as a part of his illness.
So, as you hopefully are enjoying a public holiday tomorrow for the King's birthday, I urge you to remember Neale and what he fought for. I know that I will be dropping a curtsey and raising a glass in his honour, to someone whose courage was to me at least, nothing short of incredible. Have a great week everyone! Take care of yourselves and of each other. Stay safe out there, and as always, stay connected.