Disability Sucks, Sometimes

05/02/2016 4:25 PM AEDT | Updated 15/07/2016 12:51 PM AEST
father daughter dance

Disability sucks, sometimes. On a recent Saturday, for example, I had to leave halfway through a dinner party because I'd hit the wall with mental fatigue: a long-lasting symptom of brain injury, the result of a stroke I had six years ago.

But there are upsides to disability, too.

My 19-year-old daughter began studying in Melbourne last year. I live in NSW. Recently, out of the blue, she called to say she was struggling. I told her to sit tight while I made telephone calls to her university and health practitioners. This led to appointments for her to attend over four days. I also resolved, immediately, to fly to Melbourne to be with her for these appointments and stay for the week.

Wasn't I doing what any parent would do? Well, maybe not. In my pre-stroke, work-focussed phase, I would have made sure she knew how to get to her appointments and followed up by phone, but I would have been reluctant to take extended time off for a visit.

Karen Thompson, a social worker with the Northern Brain Injury Service and a finalist in the National Disability Awards, said: "An acquired brain injury changes an individual's life in all its domains, physically, cognitively and socially. Many of my clients have said how this has changed their lives in positive ways, rather than what they've lost. Often, it's a strength that you get when faced with adversity."

Actor Michael J. Fox, diagnosed with Parkinson's Disease at age 30, says in his memoir Lucky Man: "If you were to rush into this room right now and announce you had struck a deal-with God, Allah, Buddha, Christ, Krishna, Bill Gates, whomever in which the 10 years since my diagnosis could be magically taken away, traded in for 10 more years as the person I was before -- I would, without a moment's hesitation, tell you to take a hike."

What's going on?

Last year, I attended a presentation given by Dr Bronwyn Morris, a psycho-oncology researcher, at the University of Queensland's Compassion Symposium in 2015. She used the term Posttraumatic Growth (PTG) when describing the way people often thrive after a life-changing event.

Typically, she said, there is shock, disruption and distress for the survivor following a life-changing illness or injury. This leads to questions: "What's really important to me?" "Who do I want to be with?" "What work do I really want to do?" "If I can't be who I was before, what now?" When the survivor answers these questions, they gain new perspectives.

I asked Dr Morris why not all survivors flourish. The bigger the shock to the survivor, she said, the more potential there is for them to thrive. Younger people experience more shock than older people because of their sense of invincibility, and females generally thrive more than males. Those individuals with an open, positive coping style do the best.

And while disability can close 'old doors', it can also open new ones. I wouldn't be a writer now --something I really enjoy -- if I'd been able to continue in my previous occupation as a clinical psychologist.

PTG does not prevent the restrictions, challenges and distress that living with a disability can bring, but disability does encourage acceptance, patience and gratitude.

Life seems more precious to me now, more in-the-moment, with simple pleasures trumping elaborate ones. But it took two years after my stroke before I started to see an upside. The emotional pain of those dark years isn't something I wish to experience again, but the payoff is this: I like the person I am now better than the one I was before.

My daughter's appointments went well, she's back on track, and I feel reassured. By spending time with her, I was able to help with other needs, ones she'd failed to mention. We enjoyed hanging out together. On our one free day, she chose to go to Melbourne Zoo. I delighted when she asked me to take photographs of her straddling a giant statue of a yellow-striped Corroboree Frog and then crawling into a child-sized burrow to cuddle the sculpture of a wombat -- my little girl still there in her woman's body.

It was a real father-daughter moment -- you just had to be there.

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