Day 21 - Lisa Cox
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 hemorrhage 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 down.
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 family.
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 challenges began.
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
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 were lost.
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 limited sight.
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 completely missing!
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 awareness.
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 helps today)
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 situations.
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 with it.