My brother had an operation for epilepsy and woke up a different person.

Like many of you I watched Australian television’s night of nights, the Logies a few weeks ago.

When Samuel Johnson’s name was called for the Gold Logie I was pleased for him. His Silver Logie speech was full of love for his sister Connie and I expected his gold speech to follow much the same suit. Then Molly got up on stage. You could tell Molly had something to say and Sam graciously let him have the microphone and and soon after my heart started breaking.

My Facebook feed started getting quite busy: “What is Molly on? #cooked” said one. “Time to lay off the coke Molly” read another. “Have another bottle of wine #Mollydoesakanye”. There are too many to list and I went to bed feeling sad over the whole situation.

The next morning it seemed to be a headline on many websites and the Facebook posts about it continued. My sadness quickly turned to anger. Didn’t anyone get it? Molly wasn’t self indulgent, #cooked, on drugs or drunk. Molly has a Acquired Brain Injury … just like my brother, Tim.

Tim acquired his brain injury when he had 5cm of his brain removed to try and stop the debilitating epileptic seizures he was having multiple times a day. While it lessened his seizures my now 33-year-old brother has the mental age of a 14/15 year old … and the behaviours of one.

He says and does inappropriate things. He sends me voice recordings of his farts. He makes inappropriate comments about boobs. He gets his words mixed up and can’t think of the right thing to call something. Part of this problem is he has Aphasia this is where he puts words in the wrong place or calls objects the wrong thing.

For example he will say things like “Mum they are nice ear laces.” (ear rings) or What are you doing Tim? “Putting ostriches in the roof” (insulation Batts) He sometimes rambles nonsense. If he is excited about something all these behaviours are heightened and exacerbated. If he’s had a few drinks even more so. Those are the few things that can be interesting, challenging and sometimes funny.

The serious side of it is he has no short term memory,  has auditory and visual hallucinations, becomes obsessed over things, impulsive, gets paranoid and has psychotic episodes … the list goes on.

He can’t hold down a job because he can’t focus or remember how to do it. He also becomes paranoid that the people he works with are talking about him.  He sometimes decides that the whole family is against him and we are trying to steal his money, or plot against him. You should see him when he’s like that. No amount of talking to him or explaining to him will turn him around and we have to get his case worker involved to sit him down and discuss it with him.

Tim was 23 when he was first diagnosed with epilepsy. My sister Emma and I noticed that something wasn’t quite right. He would trail off mid-conversation, make comments that made no sense at all and just get up in the middle of something, take himself to bed and not be seen again for hours. Emma and I discussed how we felt that something was off.

After Emma and Tim had been on a train somewhere and Tim started rambling incoherently, we discussed  the fact that something was SERIOUSLY wrong.  Concerned, we called Mum down in Tasmania and let her know what was going on. Mum says now that that phone call from us changed her life.

After a flurry of appointments with a GP who has known Tim since he was six, neurologist, EEG’S, MRI’s, sleep studies and more the diagnosis came back that Tim had epilepsy.

The years that followed were a roller coaster. Tim tried to maintain independence and not let his condition get the better of him. He didn't have convulsive seizures often. They were once in a blue moon. Instead he would have "absence seizures" or complex partial seizures as they’re officially called.... hence the trailing off mid conversation, talking gibberish etc.

The seizures initially were controlled by medication, however despite upping his meds, they became more and more frequent, to the point he spent a lot of time sleeping as the seizures were happening so often he was constantly exhausted. Tim became depressed and suicidal.

More tests were done and it was determined that Tim was having many seizures, multiple times a day and even as he slept . He spent a LOT of time on the neurology ward St Vincent’s in Melbourne and had electrodes attached to his skull for weeks at a time to pinpoint exactly where the seizures were coming from. He had temporal lobe epilepsy. The temporal lobe is the part of the brain responsible for auditory and visual perception, language and memory.

There were many appointments with his neurology team - ultimately he would be a good candidate for the surgery to remove the part of his brain where the seizures were located. The risks of the surgery were explained and weighed up and ultimately the decision was made to go ahead with the temporal lobectomy so Tim could hopefully have a life free of seizures.

Listen: Mamamia Out Loud discuss what no one was saying about Molly Meldrum at the Logies (post continues after audio...)

In Nov 2009, the day came for Tim to have his surgery. He was going to be awake for it - the patient has to be so they can be asked questions throughout the surgery so the neurologist knows they’re not taking too much.

Once the drugs started to wear off and he started to speak it became obvious that things weren’t all rosy. He would try and talk to us about something but all the wrong words were coming out and they made no sense.

Initially they told us that it was because he had some swelling on the brain and the aphasia (the muddling up of words) would right itself over time. He was also having trouble remembering things and was hallucinating. Then he got an infection in the part of the skull they had removed, so he had to have another surgery to take it out.

He had no skull on the left side of his head for eight months. One knock to the head in the wrong place could kill him. In the hospital he had a massive bandage around his head and where the bone was missing, written in permanent marker was “NO SKULL” . My sister and I got our hands on another marker and wrote across the front of his bandage “NO BRAIN”. In the outside world he had to wear a special helmet that had a protective piece built into it, so if he fell and bumped his head, it acted as the skull.

After eight months a 3D printer in the US created a replica of Tim’s skull, and mapped out and made the missing piece. Another surgery entailed and he had his skull replaced. It’s clear resin. We often joke that if we peel back his scalp, we could see his brain through the window. Overall, Tim has had five surgeries, with more to come.

After some time, it was finally realised that Tim had an Acquired Brain Injury in his left temporal lobe as a result of the operation and he would never be the same again. In the years that followed his surgery all our lives have changed immensely.

My mum is his full time carer. Tim lives with mum, she has to deal with him constantly and deal with all his behaviours from putting a stop to him carrying on about inappropriate things - usually boobs and stupid filthy jokes that make no sense, to deciphering what he is trying to say when he gets his words mixed up, to the daily battle to get him to have a shower (because he had one yesterday!!).

It's hard work for her and she struggles. She lives alone with him on a reasonably isolated property in Tassie where there is no one close by to help her if she has a problem with him.

Dad lives overseas and while he’s been a financial support. He doesn’t seem to understand Tim and his needs. I think Dad wants Tim to be the same kid he was growing up before all this happened. He wants him to be the excellent swimmer he once was (when he was nine, Tim was the youngest swimmer to ever compete in the 5km Swan River swim) or the WA Institute of Sport State Gymnast training for the Olympics as he once did, or the footy player, or generally just the Tim we all knew as a son, a brother and a friend. Dad’s great in so many ways and I love him but he’s never been very good emotionally.

My sister and I get frustrated with Mum at times because everything revolves around Tim. Personally, I often keep things going on in my own life to myself as I don't want to burden Mum with more problems. But sometimes we selfishly want life to revolve around us.

We don’t want to talk about Tim and how he’s going in every single conversation. I’ve had a huge argument with Mum about this.  I’m a bottler and I tend to hold things in until the cap flies off and I can’t hold things in any longer.  I know I hurt Mum by saying the things I said that day but at the same time it was how I felt and at the end of the day, feelings are yours and whether they’re right or wrong you can’t help how you feel.

Having an ABI is socially isolating, not just for the person but for their carer as well. Tim doesn’t have any friends. He used to have a lot of friends, but people didn’t know how to deal with him so they pulled away and stopped contacting him.

He should have friends. He’s stupidly funny and has the best most infectious laugh. He’s generous (sometimes - he can also be the world’s biggest tight ass and getting money out of him is like getting blood out of a stone!) and he’s kind, thoughtful and caring.

Mum has lost a lot of friends because people don’t understand why a 60+ year old woman always has her 33-year-old son with her or why her life has to revolve so much around Tim.

It’s very interesting that the people you thought were good friends have disappeared and don’t get in contact with Mum anymore. They seem to think that because Tim can walk and talk and appears to be normal on the outside that there is nothing wrong with him and he is just bludging by living at home and not working. There are a couple of true and genuine friends who have stuck by Mum through all this and I am so thankful of the friendship, love and support they have shown her (and Tim) through it all.

Tim wouldn’t be where he is today without the support of TABIS (Tasmanian Acquired Brain Injury Services) and his case worker Paul. That man is an ANGEL. He has been nothing short of amazing. I wish there were more people in the world like him. Mum had tried and tried to get some sort of assistance with Tim and it wasn’t until TABIS and Paul came into our lives that things started changing for the better. Paul has been an amazing support to not just Tim but to the whole family.

In the early days we all struggled with Tim and how to “deal” with him. Emma particularly so. She and Tim had been VERY close as kids and Tim wasn’t Tim as she remembered him.

Paul sat her down one day and explained to her that the Tim she knew was gone and that she was mourning him. But there was a new Tim that she would get to know and love.

At some point in our lives, Mum won’t be around to look after Tim and it will be up to Emma and I to take over the role as his carer. It’s something I think about a lot and no doubt Emma does too. We want Mum to lengthen the tether a bit and force Tim to be a little more independent and not rely on her so much. She gets frustrated and says that she knows that is what she needs to do.

Mum would love to live her life how she wants to live it and not have it dictated by Tim but deep down I know she will struggle to do that. He’s her youngest child, the only boy. She’s scared of what will happen if she lets him go too far on his own. She doesn’t want him to go back into that dark hole he was in a few years ago where we all expected to hear the worst.

A positive of Tim’s brain injury is that he has become quite an amazing artist! He creates incredibly colourful psychedelic pieces. He says that it is what he sees in his brain. I find it fascinating. He put on his first exhibition last year and most every piece was sold, with many requests for more, and even a couple of commission pieces. I love seeing what his next creation will be.

There are still challenges and many ups and downs and there will be for the rest of his life. I love and adore my brother and I don’t think he would be with us today if he hadn’t had his surgery, so I wouldn’t change a thing. While Tim may not be the Tim I grew up with, I am privileged to have the Tim of today in my life. I know everyone in my family feels the same way.

By writing this post, I’m sticking up for Molly and the countless others like him and my brother who have the hidden disability that is an ABI. It is a bit like an iceberg you only see the 10% of the problem above the water and the other 90% is going on below the surface.

I think it's incredibly important to raise awareness of ABI’s. They’re one of the many hidden disabilities. I implore all of you to think about this next time someone is acting a little differently, saying or doing something that may not be socially appropriate, rambling nonsense or speaking incoherently. There’s a high chance they’re not drunk or on drugs. Please be kind to others and think before you judge.