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Warren's story

Warren’s life changed direction when he turned 21, and was diagnosed with a rare brain tumour.

Be brave and think like the blood group ‘B positive’

Getting used to life with an acquired brain injury (ABI) was like living in a nightmare.

Over the years Warren has learnt to accept the changes physically, intellectually and emotionally – all of which has been helped by his positive attitude and determination.

warren-from-compass-abi-support-group

Read Warren's story, in his own words

On my 21st birthday my life changed forever, but not in the way it usually does for most 21-year-olds.

After waking up with double vision and seeing an optometrist a few days earlier, I spent my birthday at the Eye and Ear Hospital having a cat scan, which revealed I had a rare brain tumor called a pineal germinoma.

This is a tumor that strikes one person in four million.

I was too young to die and determined to stay positive

On Christmas Eve, I had an operation to add a cranial shunt drainage valve to ease the fluid build-up in my skull. When I woke up on Christmas Day, with my family by my side, I said "I am going to beat this."

After the operation, I had fifteen radiation treatments to either side of my head, then twenty treatments down my spine in case the tumor had moved. I was on steroids for five months after the treatment ended to control the nausea during and after treatment.

My life before the injury was pretty average yet physically demanding. I had to push heavy trolleys full of wet laundry across to the spinner and then place the items into a large dryer.

Living with a brain injury was like living in a nightmare

Having to accept the changes physically, intellectually and emotionally, knowing that I am no longer the person I once was.

It has been a very steep learning curve to make all the adjustments in balance, vision, memory loss, personal traits, etc.

Some people now see me as deficient, but most people are caring, helpful and non-discriminatory and accept me as an equal.

When I was first diagnosed, I was told that there was some chance of partial recovery in regard to vision and memory but not to expect miracles.

Most recovery happens in the first two years, though it is very slow to occur. It has been so difficult to cope with my ABI that I would advise the medical profession to offer counselling and therapy.

In 2009 I found and joined Compass, and I’m so glad that I did.

After 25 years navigating the world with a brain injury on my own, I was so thankful to find this group.

We’ve all got similar problems but we can work on them and try to understand them together.

More than anything else, we’re there for each other – I really value the friendships I have made and it feels like family.

Being part of Compass has helped me to accept what has happened to me

It's helped me realise that I still have a lot to offer society at large and to see that there is life after an ABI, it’s just different.

Compass has given me the incentive to learn new skills and to come to terms with the changes in my mind/brain.

I’ve learnt how to use the coffee machine and enjoy making coffees for other members and visitors.

I’ve also found a lot of books about the brain, and I like to share these with other people at Compass, so together we can learn about how the brain works and how we’ve all been impacted in different ways.

Through my National Disability Insurance Scheme (NDIS) plan, I’ve been able to access some extra support so I can keep building my skills and be part of the community.

After decades out of the workforce, I’m really excited to start a new job at Brunswick Industries.

I’ll start off working two half-days a week and will have a support worker with me while I get used to getting to and from work, and adjust to my new workplace.

I’m a hard worker, 100% committed and like to be busy, so getting back into the workforce is a big deal for me.

Before my brain injury, I took my health for granted – but now I work for it and am grateful for it. Life is precious and every day is a bonus.

My recommendation to other people with an ABI is to stay positive and strong

To quote James Taylor, ‘before you choose, criticise and abuse, walk a mile in my shoes’.

Warren is a member of Compass, our ABI support group

If you have an ABI, can relate to Warren’s story and would like more information about how you can get involved, visit our Living with an ABI page.

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