After encephalitis erased his memory at 18, Trevor had to start his life over. From basic skills to understanding human connection. His journey was filled with challenges, yet he found purpose in his career and community. Now, he shares his story to inspire others and honour carers who make recovery possible.  

This is Trevor’s journey in his own words: 

At the tender age of 18, I contracted encephalitis herpes (a virus in my brain). As a result, I had a seizure and ended up in a coma. My parents sat beside me in a hospital for 10 days. Then I recovered to start my life over, truly a re-birth as I had no past life memory at all. 

My parents accompanied me home in a wheelchair. With so much memory lost, I did not realise that you can live more than one day. Therefore, at night mum or dad would sit with me and read to me as I cried, thinking I was about to die. These early days were very confusing as I met these people called brothers and sisters, and as they had left home before I was born, I did not know who they were.  

One of the early memories is dad teaching me how to walk and learning what numbers and letters are. 

My acquired brain injury side effects resulted in some unusual situations; like eating a banana without taking the skin off or taking a baking dish out of the oven without gloves, which gave off a funny noise (my skin sizzling on the hot pan) because I had also lost my sense of hot and cold.  

So, when taking a shower my father would adjust the temperature so I could wash myself, but sometimes I would turn the hot or cold off first, and I would come out all red or bumps (cold). That took me over two years to redevelop, and some friends still say that I still haven’t got my full senses back! 

But the funny thing is that I still, (after 33 years), have no sense of taste or smell. Yes ‘you are reading this’ can you tell me what is a taste or a smell? Very hard to explain what to me as a theory. I feel so gifted to be able to eat a piece of fruit which tastes like chocolate or lemon, same thing? Another anomaly is that when I eat, my brain responds and tells me that I am so tired. All of my muscles ache. So, I have to cut up my meal first and then eat using my fork only, as I have trouble lifting a knife and fork at the same time. Sometimes, I still have to go and lay down after a meal. Early in life, I sweated profusely, and Dad had to hand feed me. And I still joke today that I lose so much weight every time I eat. 

As far as my sexual instincts went, I had a lot of early challenges. I did not realise that there was a male or female. Looking at it from my side of the fence, I had no attraction to either sex; I was so free. I asked my teacher (mum), why is it that person is hardly wearing any clothes or why there are more females on TV than males. Then I got judged by others like my father and brothers who could not talk about sexual attraction to me as I was different. 

Mum educated me about what a relationship is, but it was overwhelming to me. However, a number of years later I first looked at a nice-looking lady (I felt gifted). Then it took two more years before I could go into a satisfying relationship. 

Memory is truly a minefield. Like a smell, memory, hearing and so on, but there have been some things I know I have seen before. But it must have been in a book? A funny incident (one of many) was when I swam in the ocean for the first time since my illness. I just jumped in the water, but I did not take my shoes off, and I did not know what a wave was, so I got knocked around. Now I carry a pocket diary to remind me where I supposed to be. However, my physical orientation and landscape memory is terrific. 

There was a big personality change due to my encephalitis, as I used to be interested in sports but now, I am interested in bush walking and music. It was so hard for the family and others around me to accept the new Trevor. I found it very hard and lonely at times until I mixed with others with the same interests, and to make friends. 

Having a career saved me and kept my mind healthy, and I am now able to make kitchens for my own company. All my achievements are down to my carers (parents).

So, I ask all carers to stand tall and become aware of all the resources available for you and the ones you care for. You are not alone.

Finally, some more information; encephalitis is an Inflammation of the brain, often due to infection. The infection may be bacterial or viral. In some cases, encephalitis may be the result of an immune system disorder.  

Mild cases my cause no symptoms or mid flu-like symptoms. Severe cases can be life-threatening. Immediate medical attention is required for symptoms such as confusion, hallucinations, seizures, weakness, and loss of sensation.  

In addition to addressing the underlying cause, treatments include symptomatic relief and supportive care.  

Cheers Trevor.