From my child's battle to my own
“My experience with brain injury started 25 years ago, when I had a family member sustain a severe brain injury as a five-year-old child. One of my children was hit by a car – it was touch and go for a few days, they were in intensive care for about 10 days, a coma for three weeks, in hospital for two months, with ongoing therapy for 12 months after that.
“My child had to learn everything again as from birth – they had to learn how to hold their head up, how to roll over – it was just like watching a baby develop, though at a much faster rate.
“It’s not like on TV – it’s not that they suddenly wake up and everything’s OK – by the end of their first day out of the coma, my little child could say just three words: Baa lamb (a favourite toy) was one of them– so we knew it was a good sign.
“My child made a good physical recovery – and one year later, was running around like everyone else, but the injury was still very much there. Unfortunately for us, we didn’t know much about brain injuries in those days – we knew nothing in fact. We had no understanding of cognitive deficits, or how the brain had been affected. No information or guidance around parenting a child with attention, concentration and memory difficulties was available. What we did know was our child had trouble coping which often showed itself in behaviour making their interactions with others problematic for everyone.
“It wasn’t until around the age of 20 that they were properly assessed and some of the issues they faced were identified. If we had known that the brain injury had affected their ability to hear, understand and process information correctly it would have been a huge help with the schooling.
“That experience started me on this journey. Brain injury is for life.
In those days we were living rurally so we had no other contact with people with brain injuries or who understood the difficulties we faced on a daily basis. It wasn’t until we moved to Dunedin in 1995, that I got involved with the Otago Head Injury society, that’s where I gained a lot of my knowledge and started off, possibly helping people in a very minor way. The Head Injury’s focus was to make sure that people could connect socially, because a lot of people find that a real struggle.
“In 2006 the Brain Injury Association, which had the national contract with the Ministry of Health advertised for a Liaison Officer for Otago. This was my dream job to help people who were facing the same issues we had as a family. I applied for the job and have been here since.
“In my child’s day, MRI wasn’t available, and while you couldn’t fault the hospital service, the community support wasn’t really there. It worries me that today there are children still having injuries and being discharged home without families having a good understanding of the injury and with little support. The pressure of a brain injury on families or relationships is great.
“Most mild brain injuries make a pretty good recovery and get on with life often using strategies learnt during rehabilitation. But for some people, they aren’t fortunate enough to progress in the same way. The hidden nature of the brain injury means it’s difficult for people to understand.
“My own battle came years after my child was grown up. I noticed in February (2011) that my balance seemed worse than usual. I was teetering, but then I found I was falling to the side when I was sitting on a chair. I went to my GP and I was diagnosed with BPPV (vertigo). I was booked to go on my big OE in six weeks and wanted to be right for this. My GP sent me to an ear, nose and throat specialist to try and get the vertigo sorted.
“I understood about vertigo and inner ear problems but could not understand why it was impinging on my ability to function. I saw the specialist and had some treatment. From then on, I was as crook as, I was on all fours, vomiting constantly, unable to work. I kept getting numbers mixed up, and saying things that made no sense at all. I spent most of my time sleeping. Everything was such an effort. I felt so disconnected with the world.
“I felt all along that it wasn’t just vertigo.
“In the end I was referred for a scan and they found a tumour (benign). I got the diagnosis – and in some ways I was quite relieved. There was a reason why I was feeling as bad as I was.
“They operated on June 6th – a week after I got a diagnosis.
“Rehabilitation has been good. On a good day, I’ll be able to do this and that, but on a bad day, you realise you can overdo it very easily. It really is important to do all of those things I’ve been talking to my clients about doing for years. I’m getting back to work. I’m still able to do most things. I just have plan my days better and adjust my expectations a bit. The biggest adjustment for me has been going back to work slowly. At the moment, I may have a bad day every week – but if you over do it, every day could be a bad day.
“I was very relieved that I helped with the campaign here in the south to retain neurosurgery in Dunedin (in 2010). At the time, I never ever dreamed that I would use the service myself. Many of my clients wouldn’t be here today if we didn’t have neurosurgery here in Dunedin. They were keen and quite inspirational telling their stories publicly to fight in the campaign to keep the service. Because of them I knew I had to tell my story too – to ensure things get even better for future generations.”