In 2005 I was a healthy 24-year-old.
I'd finished two university degrees, rock climbed around Thailand,
backpacked through Europe, and played volleyball with the
Australian squad. I worked full-time in the corporate world and
lived a healthy lifestyle.
I wasn't considered 'high-risk' for a stroke. I was wrong.
A rare strand of the streptococcus-A virus had a party in my body,
but the party got out of control causing my brain to haemorrhage
and for me to collapse at the Melbourne Airport. I was immediately
rushed to hospital where tests and scans revealed the significant
bleed in my brain as every one of my internal organs began to shut
My family were called in Brisbane and told to come to Melbourne
immediately as I wasn't expected to live through the night. My
lungs had collapsed and I clinically died twice, but was
resuscitated. Specialists contemplated draining fluid from my brain
to ease the pressure, but decided instead to let my body absorb the
bleed naturally as my condition was too fragile for surgery.
I spent the next three weeks in a coma and two months on life
support. During this time I was having violent convulsions,
apparently caused by the Acquired Brain Injury (ABI).
Numerous blood transfusions, kidney dialysis and trips to the
hyperbaric chamber were all a part of the intensive care unit (ICU)
circus for my family and me. Fortunately for me though, I don't
remember a thing. For two months my wonderful family camped outside
the ICU. The news was never good, and specialists said my condition
was not improving at all. They would test for a brain signal in one
week and if none was found my family would need to consider turning
off my life support. That was the longest seven days for my
To be honest there are still some days I doubt they'd find a brain
signal before I have a strong morning coffee! When I came off life
support I was transferred by air ambulance to Brisbane where more
All up, I spent over a year in hospital (the first time). My
extremities had turned gangrenous, and despite initial concerns
that I could lose both legs and one arm, surgeons only had to
amputate nine fingertips, all of my toes and one leg. By this time
I was 'healthy' enough (infection free) for heart surgery.
After the first year I returned home, however, it wasn't long
before I was back in hospital having one of my hips replaced. I
celebrated my 25th and 26th birthdays in hospital but knew that I
still had so much life to look forward to.
The ongoing side-effects of my
ABI presents differently in everyone, but for me vision impairment
and fatigue have been the main struggles (and are often more
challenging than my physical disabilities). Epilepsy, memory loss,
poor concentration, speech difficulties and impaired coordination
are also worse at different times.
You can see my wheelchair, scars and amputated fingertips but you
can't see epilepsy, fatigue or vision impairment (I'm technically
25% blind). Unfortunately, many have mistaken my 'invisible
disabilities' as rude, difficult or antisocial behaviour. My
family, friends and I have been shocked and disgusted by the
comments from seemingly intelligent adults who've said really
stupid things like "Disability must be easy for you because you
don't look disabled"... Ummm! <insert expletives here>.
Comments like this are the worst examples of people being ignorant
of 'invisible disabilities' as some of these people actually worked
in the disability sector.
My rehabilitation is ongoing, and takes daily commitment and
persistence. It has been just over seven years since my ABI, and I
still discover myself regaining skills and abilities that I thought
Returning to gainful, mentally stimulating work was really
important to me. As a writer, I also faced challenges navigating a
computer keyboard with my new hands (minus nine fingertips) and
I confronted walls of discrimination from employers who saw my
disabilities before they saw my ability. My physical disabilities
were frequently mistaken for intellectual disabilities which was
immensely frustrating. I knew I was a long way off where I used to
be and had a heap of challenges but my brain was injured not
In the end I decided I'd go back to study and complete a Diploma of
Business Entrepreneurship and started my own business. I'd always
thought about writing a book but it took an ABI for me to actually
do it. I published my first non-fiction book in 2009 and it was
short listed for a Publishers award. I was then asked to write a
second book which is due for release later this year. I'm currently
writing my third book and nearing completion of the manuscript.
Illness took my life twice. Surgeons took my fingers, toes and leg.
Years in and out of hospital and life in a wheelchair took a degree
of independence. But nobody can take my passion for writing.
I also do public speaking engagements. My speech has 'bad days' but
I wasn't going to let that hold me back from speaking out on issues
that are important to me - like positive body image and disability
Last year I was invited to attend a function at Parliament House in
Canberra for the NDIS (National Disability Insurance Scheme). I
remember being in the room, surrounded by MPs as the prime minister
spoke. I realised that I wouldn't have had this fantastic
opportunity if it were not for my ABI.
What helped me recover (and still
Gratitude and perspective. A brain
injury might not seem like something to be grateful for but if
you're reading this (and have an ABI) then be grateful that you've
retained the cognitive functioning to do so. During my recovery (in
a Brisbane public hospital) Dad put it in perspective, reminding me
of how lucky I was to just be alive and have clean water and food
at my bedside - even if it was hospital food! Sure I have obstacles
but they're nothing compared to others living in challenging
Focus on what you can do and what you do
have. Try to focus on all that you DO have in your life.
Instead of thinking about the 25% of vision that I've lost I focus
on the 75% of sight that I have left.
I can't use my legs but I can use my voice which is why I'm so
proud to be an Ambassador for Synapse. I'm very fortunate to have
the opportunity to stand up (metaphorically at least) for over 1.6
million Australians whose lives are also affected by ABI.
Challenge yourself (safely). Reach
for the stars - you might not touch them but at least you tried. I
found I improved a little more every time I was placed in a new
situation with new challenges. My recovery plateaued somewhat after
a year in hospital, but rapidly improved again once I moved home
and had to retrain my brain to perform simple new tasks.
Celebrate small achievements. Even
though it might seem trivial at first, don't forget to celebrate
the small stuff! I'd captained the Queensland volleyball team to
gold at the National titles but after ABI that meant nothing and my
greatest personal achievement was just brushing my own teeth.
Don't be afraid to fail. I failed
miserably the first time I tried to relearn basic tasks. More food
ended up in my lap than in my mouth when I first started using
cutlery by myself. But with patience and persistence it gets
better! Because rock climbing was such a big part of my
earlier life I approached my recovery in the same way. In rock
climbing you climb then you fall . . . but then you climb a bit
further and fall again. So this pattern of climbing and falling
continues until you reach the top!
ABI? - Attitude Beats It! Motivation
and inspiration can be hard to find after a brain injury, but
sometimes you have to be your own cheerleader. Family, friends and
medical professionals all play an extremely important role in
recovery but there are always going to be certain times and
situations when it's the person you see in the mirror who has to do
the hard work and provide the motivation.
ABI is a disability but there's nothing more
disabling than a bad attitude. No amount of bitterness or
wallowing in self-pity will change what has happened to me. I can't
control the fact that I have an ABI but I can control how I deal