Stories & Achievements: Jonni’s Story

Jonni’s story: a growing family

Driving about 120k’s an hour across Stockton Bridge, I reached that 90 degree bend at Kooragang. I was running late for work and I hit another car after losing control.  It had been raining. I don’t remember anything. Fortunately no-one in the car I hit was hurt.

When the ambulance arrived I was 3 on the Glasgow Coma Scale, which is the lowest. Almost dead.  They brought me up to a 7 when I got to hospital where I kept pulling the cords out so they induced a coma.

My partner Zac and I have been together since 2010, and my accident happened in 2015, when I was 21.  It was a big shock for him to receive that phone call.

I came out of the coma after 6 days and was in post-traumatic amnesia for 13 days.  It was a severe brain injury but they decided not to operate because it would likely have made the brain injury worse. The accident broke my cheekbone in three places and I shattered my pelvis in five places. I got through it all with no surgery, remarkably.

Bones take about 8 weeks to heal, but then I had to regain the muscle mass that I’d lost because of being bedridden. I was on crutches for a while.

After my accident there were things I would still try and do but my body would just shut down.  I wasn’t able to function beyond a certain point, and then I would sleep because of exhaustion.  I would think to myself ‘Why am I exhausted?’ and then get exhausted from thinking about why I was exhausted, and then sleep more. And so the depression cycle starts with me thinking, ‘Oh I can’t do anything. I’m useless’.  All these bad thoughts just started creeping in and that’s not healthy.

Mental health issues have been in my family.  Prior to my brain injury I’d found ways to manage around it and cope with depression when it came.  I wasn’t always a depressed person. I was very happy at times, always out, super busy working three jobs, playing touch footy and so on.

When I got my brain injury it really hit me that I couldn’t do all that I was once able to do.  That still gets me.  I was a very independent person.  I wanted to make something of myself.  Suddenly I also had to deal with major fatigue.

Zac and I moved in together in 2017 and in 2018 I got a job as an office assistant through Castle Employment.  While at that office job we reached a mutual decision that I wasn’t improving in my recovery and what I had to offer wasn’t what the company needed. So they said, ‘How about you focus on just trying to live your best life and do what you need to do?’

Then in 2018 I attempted Uni and TAFE. I tried to become a support worker and quickly realized that’s this was the sort of support that I needed.  I wasn’t getting any support prior to that, because I was still living at my parents when the accident happened.  They looked after me initially.

My case manager at Lifetime Care took a looked at the state at my own house and said ‘How would you feel about some support to help you through the day.’ I just burst into tears, I was so happy! Finally someone realised that I needed help. In 2019 I began support with Headstart.

Benson is 16 months old now and he’s great.  His latest word is ‘purple’!  He has tested us a lot and he’s also had food allergies from a very young age.  He can’t have mother’s milk, dairy milk, soy milk or oat milk. Only rice milk and even on a vegan diet many things contain soy.  It’s surprising because Zac and I don’t have any issues, but we’re working through it.  They love him at school and he’s going to be a good big brother.

I’m eight weeks pregnant with no.2!  Right now my goal is to take it easy and not put too much pressure on myself. It’s been exhausting and I don’t remember it being this tiring first time round - it’s probably because I already have a child.

My involvement with Headstart’s Community Education Team has also taken a backseat now because I’ve got a child, and he’s my priority. So at the moment if some things can’t get done right away it doesn’t matter. They’ll still be there to be done later.  I just need to look after myself.  My top priority is to eat, because I forget to eat.

My support workers help with things around the house and assist with organising finances and unpaid bills among other things. One of my first support workers was very good at those sorts of things.  Every time I would get distracted she’d say. ‘OK come, let’s do this now.’  A good support worker knows the different ways that people’s brains work and is able to adapt to it.

I desperately needed help in this area. When I’d  come to a task that I didn’t know where to begin, my CSW would say ‘Okay, we’re going to start slowly’, and she’d break it down.  I’ve now made so many changes and improvements to the different rooms in the house, it’s been super helpful.

For my mental health I see a psychologist monthly, but am now thinking about getting a life coach that I can touch base with for 10 minutes every morning to help set me up for the day.  We’re working on getting that funded.

I would start a task and get distracted, then start a different one.   I’d forget that I was doing something or get distracted. Then by the end of the day I was just overwhelmed by all of it, and not wanting to do anything.

I was on a lot of medication a while ago, and being the person that I am I wasn’t happy with taking 13 tablets a day.  I got to a point where I didn’t know which medications were working for me because I’ve been on them for so long.  I also wasn’t in that much pain anymore so I decided to start reducing the medication.  My GP didn’t seem to agree but I was adamant and I believe that it’s my body, my choice.

So I cold turkeyed and it was two weeks of hell.  I had the biggest migraine and I couldn’t get out of bed.  But I got through it and I am happier for it.

They don’t understand very much about brain injury.  The mental fog comes back, and it comes back daily.   Being a new mum doesn’t make it any easier.  I do actually think it’s been harder being a mother than it would’ve without a brain injury.

Finances were a big struggle for us.  That was massive because the insurance money stopped.  For a while we didn’t know that Centrelink help was available to me.  I’m grateful for that because there’s no government support in other countries like my country of birth, South Africa.

Since Benson was born there have been days where support workers would come in and they would just start cleaning the kitchen.  I’d start to feel guilty because I couldn’t help very much and I also started getting arthritis, so that makes it harder to multi-task and feed my son.  I’m doing OK now.  I really need to make sure that I’m firstly looking after me, and then I can look after Benson.

That’s what I’ve refocussed my energy on.  My partner Zac is great and in the background supporting us too.  There’s been a couple of times where I’ve had a PTSD trigger and I’ve not coped well at all. I’ve snapped, and I’ve had to take time out and Zac’s taken over things.

One of the impacts of my brain injury is that I need in depth explanation of things. Right now I’m engaged and on the road to get married.  I hired a wedding planner and when she sends me emails my reaction is, ‘Whoa, that’s a bit much for me to take in right now!  Can we make a phone call to discuss it maybe next week?’ I don’t think the wedding planner really understands. Before I moved out of home I was very upfront and open and honest about my struggles.  I’d say to people ‘Look, I’ve got a brain injury and you’re going to have to explain everything to me like I’m a two year old.’

At the same time I can’t keep using the brain injury as an excuse.  So I’ve stopped doing that.  But it’s very much still there and I think it’ll be a lifelong thing.