Hope & Motion

I have often found that resonant words can soothe a rough situation; with that intention I begin this personal update.

In early November 2019, dad informed that he had been given the diagnosis Motor Neurone Disease (MND). It explained the loss of muscles and movement he was experiencing, and is a currently incurable, degenerative condition, with uncertain timelines.

I value bringing my whole self to my work & mission, so it’s been hard to maintain his privacy by not sharing on the topic, especially when it has been so life-changing.

Some of the emotions that I’ve experienced since that moment include: surprise, shock, rage, anger, resentment, guilt, regret, sadness, loss, nostalgia, longing, relief, happiness, joy, excitement, disgust, horror, hope…

Immediately after the news day-to-day life felt insurmountable: waking, eating, working, studying, interacting with others… Eventually these created a distraction, a reprieve, a focus… and later on… moments where I returned to my own separate sense of self, purpose and vision for my future. It continues to change day-to-day.

Practically, I have been required to move, change focus on finances, level of work, standards of study, social circles, support people and pathways for my own ongoing growth… with the pandemic heightening stress & isolation due to the immediate threat it provides to the immune-compromised.

It has also given me permission prioritise my own happiness & what I truly want for life, and take more action towards that now, rather than later, as later isn’t guaranteed….

There aren’t many words that can bring relief in such a moment, but to those of you who have been effected by MND or a different life-changing diagnosis: I see you & wish you support from this & below:

– MND Australia: peer support groups for carers (young carers start-up group)

– on Anticipatory Grief

– Mary Hoang’s words

Image one: Vivid Light Festival, Sydney, 2017 with dad.

Image two: Dad fixes a tangled kite for my sister & I.