Today my dad would have turned 95, if he had survived this long.
Instead, the ghastly, grotesque illness called Motor Neurone Disease (that’s MND in Australia, and ALS or Lou Gehrig’s Disease in the US) diminished him to death at the age of 67, twenty-eight years ago. Even back then, in 1990, we were hoping for a cure ‘soon’. While some people live for a long (and extremely difficult) time with MND (notably the brilliant Professor Stephen Hawking), many die much sooner. For my dad, the progress of the disease from diagnosis to death was four short years.
While there has been some progress in the treatment and management of MND, we are all still waiting. This was brought home deeply by the recent Australian Story program, ‘The Enemy Within’, detailing the work and illness of the amazing Justin Yerbury.
I still miss my dad. And although I know that he would have completely supported my writing career, and that he always encouraged me, I really, really regret the fact that he doesn’t know about it, and that I haven’t been able to share this stage of my life with him.
There are so many untold stories. I think one day they will appear. What I’m thinking about now is the last time I saw him, in the hospice, on the day he died. Dad explained that a male nurse, all in white, had visited his room in the night and said that it was time to leave. Dad said, ‘I told him I couldn’t walk, but he said it was time to go.’
I checked with the staff – no male nurse had been on duty the night before. Strange.
But a few hours later, after all his visitors had gone, my dad up and left.