TRIGGER WARNING, in this interview we discuss domestic violence.

Acquired brain injury with Brooke Simon

Brooke acquired her brain injury at the hands of persistent domestic violence. The trauma she experienced resulted in her losing her sight in one eye, and partially blind in other. She is also partially deaf and uses hearing aids, additionally her mobility has been affected.

Overcoming the extensive physical and psychological injuries she endured, Brooke runs her own business and since her rehabilitation she has had to develop coping strategies to deal with her severe memory loss. 

If you are worried about someone, look out for signs that their behaviour has altered, how they interact with people around them and their appearance. 

If you are experiencing problems discussed in this podcast contact the following organisations for support:

 

Hosted by Paul Shriever, Hidden Disabilities Sunflower.
   
Want to share your story? email conversations@hiddendisabilitiesstore.com

 

Transcript

Paul Shriever:

Hey guys, my name's Paul. Today we are going to be talking to Brooke Simon. Brooke is all the way from Australia, in Melbourne. How are you doing Brooke?

Brooke Simon:

I'm good. Thank you.

Paul Shriever:

Lovely to meet you. Brooke has ABI, which is acquired brain injury, and it refers to any type of brain damage that occurs after birth. It can include damage sustained by infection, disease, lack of oxygen, or a blow to your head. Brooke, please introduce yourself.

Brooke Simon:

Hi, I'm Brooke. I'm almost 40, and I was one of the unlucky ones that was not born with it. I did get my ABI and other disabilities and injuries from some domestic violence that I did encounter quite a few years ago. But I'm doing well now.

Paul Shriever:

Brooke, firstly, I just want to say how terribly ... How sorry I am to hear that. That's awful. I don't think words really can do much justice to relaying the true feelings about that.

Brooke Simon:

It's taken four and a half, five years, but I'm now pretty much to the best that I'll ever be able to be, which is brilliant.

Paul Shriever:

Well, Brooke, listen, can you just ... Obviously, just touch on your health conditions now, please, and, where you're at?

Brooke Simon:

Okay. I do have the ABI, as you said, and that was from the blows to the head ... Multiple, multiple blows to the head. I am legally blind in the right eye from a disconnected retina, and partially blind in the left eye from a tear in that retina.

I have middle ear deafness on the right ear. I do need to wear hearing aids to assist me with my phone and things like that. I have had multiple operations. I think there was about four or five I've had so far. I was in hospital for about three months. I couldn't walk unaided. I had a walking frame, walking stick. I was unable to walk unaided for probably a good two and half years.

Paul Shriever:

Is this something that happened, obviously, after one incident? It sounds to me like you were probably hospitalized.

Brooke Simon:

Basically, my situation wasn't just a one-off occasion that it happened. It was multiple, multiple daily ... A couple of times a day, sometimes ... 10 months of that, roughly, about 10 months of that. I ended up getting into the hospital. He discharged me ... And I couldn't ... Out of that general fear of anyone in that situation. You don't speak, you don't open your mouth and speak.

I was smart when he discharged me, because he was yelling at me again and I used a quick thought. I said, "Oh, I need to take my medication." I didn't, but he didn't know that. And then I pretended that I didn't have the correct medication and I needed to go back to the hospital.

He said, "Oh, I'm not taking you, call an ambulance." I found that my benefit. Once I did, the lovely lady, I'm assuming she put two and two together. She saw the signs and wouldn't let him come. We got halfway to the hospital and I opened up. I blurted out everything. I told her what happened.

She was beautiful. She wrapped her arms around me, she spoke to her driver. When we got to the hospital, she got security sitting with me ... The head of the hospital and also one of the other nurses who is the head matron of the mental health ward. I was literally ward bound for two of those three months, for my own safety.

Paul Shriever:

Can I ask, did you have parents or friends around you? Did you have a network of support?

Brooke Simon:

He would not let me speak to anybody. No family, no friends. My children were only little bubbas at the time, or my youngest was a bubba. My oldest was six, turning seven.

He cut me off from the internet. He even made me change my phone number. He tracked my phone. He set up cameras in the house. He even stopped me from going to university, stopped me from running my business, which I was doing. It was a case of, I had to get my children safe first with their father, because their father is not one that did it. But I had to get them safe first.

Paul Shriever:

You are listening to The Sunflower Conversations with Paul. To learn more about The Sunflower, please visit our website. Details are in the show notes.

I'm really, genuinely pleased and glad for you that things have turned a bit of a corner and are getting better and that your life has changed for the better, because it sounds like ... Frankly, it sounds horrific. I'm just really pleased that you found some happiness.

Brooke Simon:

Thank you.

Paul Shriever:

Are your parents close by?

Brooke Simon:

No, they live in East Skips Lane, so they leave five, five and a half. Hours away from Melbourne. My mom had that stomach feeling that, often, parents get that there was something not right, and she found out what had happened. So she traveled to Melbourne every week, to the hospital, to come visit me for the three months that I was in the hospital. And now we're as close as ever. So good things have come out of all of this. I look at the positives.

Paul Shriever:

With trauma in life, I think, if what doesn't ... This is a bit of a funny thing to say, but if it doesn't kill you, I think it makes you stronger.

Brooke Simon:

It makes you stronger. Yes, it does. My Nan always said that and I am a big believer in it, as well. I'll say, I'm happily engaged now, and beautiful stepdaughter. I see my children often. I'm back in contact with my parents. So the way I say it is, while something bad happened, I now have the silver lining.

Paul Shriever:

Yes. It makes you appreciate what you've got in life, doesn't it?

Brooke Simon:

Yeah, definitely. You appreciate, and you look at things in a different light.

Paul Shriever:

Yes.

Brooke Simon:

Definitely.

Paul Shriever:

To begin with, then, how did that really impact you on a day to day basis?

Brooke Simon:

The biggest, biggest thing, which I probably struggle with the most, being I ran a business and was a university student before I got injured. My memory loss, my ABI, causes such severe memory loss.

I have, literally, my office around here, I have notice boards everywhere, and notes on my phone, and goodness for smartphones now, because everything's a note and a reminder because the memory loss is so bad for me.

Paul Shriever:

So essentially, I just go back to these coping mechanisms ... I suppose with time you've worked out ways in which to help yourself.

Brooke Simon:

Yeah. Yeah. Definitely. The biggest thing is, it's not ...

Paul Shriever:

Can I ask you how long it took to get diagnosed? Was it something that was immediate, or did it take a time?

Brooke Simon:

We took CTs, MRIs, and a lumbar puncture, and brain scans, and every other possible scan you can think of... And x-rays, because I did have two broken ribs and a broken nose as well. But with that, able to then see, yes, there was more. There was swelling, there was bruising, there was more.

That's when the CTs and the MRIs came into play. With all of those, they were able to ... Probably took them six months, roughly, before they got a proper diagnosis, or enough of a diagnosis to send it to the neurologist at a different hospital. And then it took them a couple of months as well. So, within the 12 months they had full diagnosis on all my issues and booked me straight in for surgeries and everything else.

Paul Shriever:

You are listening to The Sunflower Conversations with Paul. To share your story, details are in the show notes.

Day to day, how are things now?

Brooke Simon:

Things are pretty good. Probably in the last 18 months, I really started being able to cook and do things like that a lot better than what I could. I do still have to be careful, but I have been able to adjust.

Paul Shriever:

Brooke can I just ask you a little bit about your mental health, just touch on it? Anxiety from this experience, and even prior to it coming to a head, I would imagine that you would've experienced real anxiety and concern. Can you just talk a little bit about that, please?

Brooke Simon:

Most times I notice an issue with anxiety is when I'm on public transport, when I'm on a train, traveling into the city, or when I'm walking around the city, because I know the person that hurt me is still walking free. So again, I have learned to live with my anxiety. Some days are worse than others. If I meet somebody by the same name ... Yep, I do have a bit of a stomach where I get ... But I have got better. This happened back in 2017.

Paul Shriever:

I noticed that you're wearing a Sunflower.

Brooke Simon:

I've got a few of them on, actually. I have my bracelet, I do have my pin, and I do also wear the lanyard.

Paul Shriever:

Is it recognized? Does it help you?

Brooke Simon:

I do always wear the lanyard because it's got my train ticket on it, as well, so I always have it on. My kids are aware on what it means because they often ask, "What's the sunflower mean, Mummy?" So I tell them.

I wear the bracelet, also, when I'm at the gym. As it does get more known here in Melbourne, and here in Victoria ... Yeah, it will definitely ...

And now that ...I'm pretty sure it was Metro or Grara trains, one of the two are involved. And I think once they're all trained up, it's going to be definitely known about a lot more.

Paul Shriever:

Do you feel, personally, you need a visual indicator to help?

Brooke Simon:

Yeah, yes. Again, I don't know about where you are, but here on our trains here, we've got specific seats that are set out just for elderly, disabled, or pregnant. I feel it's definitely, at times, as it states, hidden disabilities, because someone might look like they're perfectly fine, but it's not always the case.

Paul Shriever:

Yeah, absolutely.

Brooke Simon:

Not always case.

Paul Shriever:

What reaction would you like from someone who sees the Sunflower?

Brooke Simon:

Just a simple hello, do need a hand? Or, are you okay? Just something as simple as that. You don't need to know anything else just, are you okay? Or, do you need help?

Paul Shriever:

Yeah, a bit of patience.

Brooke Simon:

That's all that needs to be said. Yep. Yep. Definitely. Definitely.

Paul Shriever:

I think that what you've been through is incredible. I'm just interested to know, if you were to give a little bit of advice, summarized, what would that be?

Brooke Simon:

Music. Because I have the hearing aids I can run music and run my phone through my hearing aids. Thank goodness. I just play music. When I'm sitting on the train, I play music because you can hear people yelling and arguing and being loud and whatever. I just play music. I filter negative things out.

When I'm at home ... And I started this one in hospital, the nurses got me onto this one, mindfulness colouring. Yep. Old fashioned colouring pencils and colouring book.

Paul Shriever:

That's lovely.

Brooke Simon:

Which is also good because of ... Again, some of my ABI and everything, I struggle with my hand eye coordination. My writing is not so neat anymore, and things like that. So the coloring can help with that as well.

Paul Shriever:

What about just someone who is experiencing what you experienced earlier on? What would you say to someone?

Brooke Simon:

That is a really hard one because, I mean, I was always ... Back when I was young, before I encountered anything like this, I was always thinking, "Oh, just leave. Just leave them if you're in that position." It's not always easy.

Turned out the teacher's parents at my daughter's school noticed a change in me. Noticed I didn't take pride in the way I dressed. I didn't put makeup on anymore. I didn't do my hair nice anymore. I didn't speak anymore to anyone. I was just in, out, kept my head down. That was a trigger for them. They knew that something wasn't right. And they actually went to police.

Being a person in that situation, it's a difficult one to get out of. It really is, because no one knows what the situation is and no one knows what barriers, or anything like that. In my mind, I had to get my children safe first. I say to other people, look out for signs for people that you know.

Paul Shriever:

Brooke, listen, it's been a real pleasure to speak with you today and I feel very humbled and privileged to have met you, and for you to have been open about your experiences. It's been really insightful. Thank you ever so much for talking to us.

Brooke Simon:

No, you're welcome. You're welcome. Thanks for having me.