Following a tragedy : God only know what I’d be without you

Much of this blog is from the speech I made for the Victorian launch of 2010's Brain Injury Awareness Week,  Melbourne Town Hall, August 15. Each year a theme is selected for the event. In 2010 it was ‘Fall Related Brain Injury’.  That year, Ian ‘Molly’ Meldrum was selected as the ‘King of Moomba’  along with Kate Ceberano .  In the same year, Kate Ceberano performed alongside Eskimo Joe and others for the ‘Lord Mayor`s Command Performance’ (also at the Melbourne Town Hall which raised money for 'Support Act'). Support Act, the Australian music industry's benevolent fund providing relief and assistance to members of the Australian music industry who are in need or suffering hardship, illness or distress, gives a breath of hope for those in the music industry. Alanis Morrisette might think of the cirsumstances as 'ironic'.

Ian ‘Molly’ Meldrum’s tragic circumstances remind you that horrible stuff happens regardless of who you are and what time of year it is.  Reports have consistently talked about the ‘long road to recovery’ that Molly finds himself on.   I can talk with some lived experience of such a ‘long road’, that has seen me arrive to a place where I’m happy and productive, but not the with same outlook I once had. People always change and I wouldn't want to be the person I was 'before the accident' anyway.

Recovery:

1.      A return to a normal state of health, mind, or  strength

 (Whatever is 'normal')

 1. Falling in love with ABI

You might think of falling and think: aging population, nursing homes, the elderly.  On the other hand you could think of a toddler learning to walk for the first time or a penny thrown down a wishing well.   Perhaps an unexpected fall in the stock market? You might have fallen out of your bed once upon a time or stepped off a ladder. You might think of American autumns, rivers, lack of co-ordination or gravity. Falls are experienced all the time. For me, the word ‘fall’ reminds me of brain injury - a tragedy? Or a new beginning? Like any piece of art: it is what you make of it.  How will you view ‘fall’? - The onus falls onto you.

2. In 2009, Brain Injury Australia, headed by Nick Rushworth, prepared an in-depth policy paper on fall-related ABI. The report dispels many myths associated with fall-related head injuries. A fact from this report:

* In 2003: nearly half a million people in Australia (2.2% of the population) had an ABI. 

- if you don’t have ABI yourself, there is a good chance you know someone with ABI. The issues raised during Brain Injury Awareness Week do not relate to a small section of society.

3. Jack and Jill

As cute as it sounds, the story of Jack and Jill works well as an allegory for the trauma of fall related brain injury. Jack and Jill went up the hill, not expecting the calamity that would follow. Their job was to fill up a bucket of water to give their family and animals a drink. Nothing out of the ordinary, it was business as usual. Then, half way up the hill, a tragedy! Jack looses his footing, hits his crown, and suffers massive head injuries to his frontal lobe as he comes tumbling down.  The reality of head injury is forced upon Jack.  Fortunately Jill is there to pick up the pieces, and she turns out to be Jack’s carer for the years to follow.  The fall is a paradigm shift, it’s a radical change, Jack and Jill will never forget this and the story will live on in history; children STILL sing about the event  in  kindergartens today! 

It takes some time to fall in love with ABI. Jack is likely to experience rejection from peers, rejection from society, and face a system that, whilst supportive, will gear him to have zero or low expectations.  A system which, despite its best endeavors, struggles to encourage people to push the limitations of disability within our society;  a system that can put a cap on ‘success’ following brain injury.

4. Many people’s prognosis following head injury recalculates itself as much as a GPS system in city traffic! Reading news reports about Molly Meldrum remind me of the early, constantly-changing prognosises that so many of my friends have heard.  And personally as initially I was advised that I would probably need to be committed to a nursing home where I would spend the rest of my life in a vegetative state.  Later as I improved, the prognosis was that if I went home, I would be house-bound, reliant on my family and would never work or support myself.  I progressed however, moved out of home, and began to recommence a career that had gone on a significant detour at age 21. I found full-time employment, and am working towards a Master of Social Work degree. The system initially told me that I could not look forward to any of these things.  

5. Throughout my recovery, I have been advised not to have great expectations, to settle for second best or nothing at all. This is something that brain injured persons become accustomed to being told. This is why I volunteer time to mentor brain injured persons and am involved in several related programs. I’ve found that too many service providers have given up on the idea of hope and this is my drive I take to the sector. Luckily I made my own high expectations, for if I had believed the initial expert advice given to me by the system I would still be living a highly restricted life, using a walking aid and receiving government benefits.

Service providers need to see that brain injury recovery has no limits.  All too often people attach limitations on you without understanding you.  Be critical of services you receive, it keeps people on their toes. Look and ask around and you’ll find a heap of services that will lead you to all kinds of support. Recently I went to a work expo held at RMIT Uni and was bowled over at the level of support that’s out there for people with a disability. And it’s not just workplace stuff, the ABI Compass Clubhouse, BrainLink, the Summer Foundation, Brain Injury Matters, 'Inability Possibility' and Melbourne Citymission are just a few organizations dedicated to supporting  participation in the community, and maximising quality of life for people with brain injury. I have had the experience of being involved in much of what the sector has to offer and got a lot from participating in it.  There are so many opportunities – you just need to know where to look.  Get in contact with a service provider!
 

  6. During my stay at the Royal Talbot Rehabilitation Hospital in 2003, the then Federal Health minister Tony Abbott made a visit to the ABI ward for a photo opportunity. He’ll be running for Prime Minister tomorrow, and recently he was quoted as saying that he couldn’t promise ‘a whole lot of extra goodies’ in improving services to people with a disability. Disability action groups felt that not only was the response patronising, it is emblematic of the lack of recognition and understanding by politicians of the basic unmet needs of people with disability in Australia.

People like Brent and myself have picked ourselves from the ground where we fell all those years ago. We now share a social responsibility to help others, share strategies and share inspiration. Some of the most valued advice I’ve received since sustaining an ABI has been from people who share a lived experience with brain injury.  Sure, dealing with fall-related ABI is difficult, but it can also be rewarding, offering you a new perspective on life and opportunities to meet and work with amazing people you would otherwise never have come in contact with.  By reframing ‘the fall’ as a turning point in life, rather than a stopping point, perhaps we can all fall in love with ABI.

  7. As far as the story of Jack and Jill goes:  Jack recovered from his fall and decided to go back to university and study Engineering. He developed a pumping system so that no one ever had to walk up the hill again. Jack and Jill lived happily ever after.

I was fortunate to receive additional funding and support through the 'Slow to Recover’ program. The assistance I received from this program is very similar to the support all Australian citizens could expect to receive through a ‘National Disability Insurance Scheme’ (NDIS).  Through Slow to recover funding, I was able to sign up for a gym membership, which has kick started my love for swimming! This Saturday I will be participating in the Lorne ‘Pier to Pub’ event.  My parents will also be coming.  My participation in this swimming event is a celebration for us all. Further, it is a celebration of what additional supports and services can achieve for people. 

For Molly Meldrum: I send my best wishes. Set yourself a goal and stick to it.  You’ve been the King of Moomba twice I can’t wait to see you on the steps of Town Hall again.  Don’t make compromises: rain, hail or shine you’ll get through this!

For Molly’s family and friends: This will be a ‘long road to recovery’. So regardless of the circumstances stick by your friend.

We’re yet to know the visible extent of Molly’s injuries once healed. Remember that the hidden nature of some acquired brain injuries can be a thorn in the side for the people who are hit by them.

This year I’ve got the opportunity to be an ambassador for the Melbourne Bike Share on a Moomba float.  Now that’s what I call a full recovery!

Ross Cottee 3 January 2012