From brain tumour to Brain Champion
Debra Lane (R) and her mum at Parliament House, Canberra
On 17 November 2015 Debra Lane received some news that would change her life forever.
“It was quite a shock to me when the doctor told me I had a very large brain tumour on my right frontal and temporal lobe.
“The doctor said to me ‘Why did you wait so long?’ I shrugged my shoulders, I just had no clue.
“In hindsight strange things were happening to me and I was changing as a person but I never made a connection to there being a real problem, and who really thinks you would have something so serious when you are still able to function.”
The doctor informed Debra that her brain was so swollen that if it had not been found she might not be alive in a few weeks time. Things happened very quickly after that day.
“I went straight to the neurosurgeon to schedule major brain surgery, but because the brain was so swollen they put me on steroids before the surgery, to get the swelling down and make the surgery less complicated.
“Though the whole event was very traumatic and frightening, I was surprisingly calm. You go into surgery wondering if you will come out of it alive or completely brain damaged. No-one has any answers for you, but my wonderful neurosurgeon was confident and made me feel safe.”
Debra’s greatest fear was waking up and not knowing anything or anyone and not being able to take care of herself, if she woke up at all.
“As I had two weeks of steroids before the surgery could take place, I decided to get organised and set up my power of attorney, will and advanced medical health plan in case it was needed. I didn’t want my family to have to make decisions about my care under such duress, it didn’t seem fair to me. How organised and calm I was still baffles me today.”
Debra came out on the other side rather well and was on a bit of a high thinking she would be back to my life in a couple of months for sure. Debra quickly learnt that this is not the case.
“What was a complete surprise to me was that the surgery was the easiest part. Once you have a brain injury the recovery is long, harrowing and difficult.
“One thing doctors do tell you is that you will never be the same person you were before the brain injury and that is difficult to believe or comprehend.
“It’s hard to lose yourself and not know who you are, what you like and what you would like to be doing in the future. The person you knew is taken away so suddenly.
“Your brain literally kicks into survival mode in the beginning and I was surrounded by rehab professionals through the State Brain Head Injury Unit, a great support network for me and my family.
“Over time you become aware of the many struggles you are living with. As the difficulties present themselves one at a time you start to feel like you are going backwards and getting worse, you’re not. You are just getting a little more aware of the problems you’re left with following your brain injury.”
Debra now has epilepsy, vision and hearing problems, slow processing, and balance issues and a few other unexplained problems.
“Something is going on with my temporal lobe, the medical tests I have every so often show that it is not normal and no one understands why.
“When I push for more information they tell me ‘I’m sorry we just don’t know enough about the brain’, which means I can’t even try to fix it, I need answers.
“So, I just do my best to recover and try to find who I am now. I feel lost and very detached from all the people in my life. The temporal lobe is where your emotions are housed and my emotions seem to be damaged.
“Out of all the problems and there are many, this one bothers me the most and I don’t know if it’s permanently damaged and unable to be fixed or if I can work on improving it.
“Every brain injury and recovery is different and without understanding the brain completely and how it works we are on our own, trying every trick in the book.”
Prior to Debra’s tumour, she watched her father-in-law suffer with motor neuron disease (MND), and her father had inclusion body myositis, but it was when her son started suffering with mental health issues nine years ago that she saw what not understanding enough about the brain really meant for her family.
“We went to so many doctors and specialists. In and out of hospital many times and so many different medications tried. Every doctor we saw gave us a different diagnosis.
“As time goes on, not getting the right treatment in the early stages meant his illness morphed into something much worse.
“The one constant thing we heard is ‘I’m sorry we just don’t know enough about the brain’, and this is why I signed on to be a Brain Champion.”
Debra has been working closely with the Australian Brain Alliance for more than six months by getting Australians to become Brain Champions to help Crack the Brain’s Code.
Debra came to Canberra in March to be a part of the Australian Brain Alliance’s political engagement activity Brains on the Hill.
“It was very exciting to be a patient advocate at Parliament House, and it was my first time to Parliament House and Canberra.
“I met some brain science researchers and learned about what research they were doing, it was fascinating and I found it to be extremely emotional for me.
“These scientists and their brilliant minds are quietly working away trying to solve the many problems humans have and to understand the brain.
“They truly care and want the answers we all so desperately need. However, to keep going and finding the answers they need support from our government.
Debra found the neurotechnology showcase at Parliament House fascinating and was able to move a ball with her thoughts alone.
“There were neuromorphic chips, brain inspired algorithms, how brains process sight and research on various neuro-diseases and mental health.
“Driving up to Parliament House on the second day we were greeted with a giant inflatable brain up on the Hill. It was fantastic.
“It looked to be sitting right on top of Parliament House, it was a sight to see.”
Debra is a true Australian Brain Champion, who has been spreading the message about becoming a Brain Champion all over Australia and especially in her home state of Western Australia.
“I really hope all of Australia will become Brain Champions and champion this great cause.
“Cracking the brain’s code will have such a huge impact on each and every one of us in so many ways and will help all other amazing researchers find the answers they are searching for.
“I have heard that understanding the brain is the final frontier. To me it should have been the beginning, the original frontier. Let Australia be leaders in brain research. It is the missing link we all need.”
Sign up to be a Brain Champion today!