Pure Joy

“My middle daughter turned 40 recently. It was a 1940’s theme party and I thought ‘Ican’tfindany outfits!’ so I decided to do something different. Katja (regular support worker) and I went as Apache Indians,” says Joy. “I called myself Sitting Bull and Katja came as Doing Bull. Everyone else was dressed to the nines and here we came as the Indians!”

Not one to blend in with the crowd, Joy’s wicked sense of humour brings a laugh a minute, especially when teamed up with quirky CSW Katja.

“Joy has always been an alternative thinker,” says Katja. “Having been a naturopath Joy eats very healthily. The other support workers are always talking about Joy’s alternative cooking - like fish head soup for breakfast. That freaked them out!”

“Fish eye balls too,” says Joy. “They’re quite sweet actually! But seriously, I like to eat well, it’s just that I’m not able to cook myself so I do need help in the kitchen. I say I’m a vegetarian, but I eat fish and occasionally flip into chicken.”

“I was born in Melbourne and grew up in Victoria. I moved to Wollongong and then lived in the Blue Mountains area for about ten years at Katoomba and

Wentworth Falls. I have to say I didn’t enjoy the aged care places there as I don’t like the system very much. After my best friend from the Blue Mountains died my daughter suggested I move to Newcastle to be closer to her.”

“I live in a SIL home in Hamilton. I don’t have anything in common with the woman I live with, but it’s better than many other places I’ve lived. My house mate watches TV from morning to night, whereas I like to go out and make the most of life.”

“My brain injury came from a large noncancerous brain tumour in 2000. I was living alone in Wollongong and my children were overseas at that stage. It was a horrendous time. I had no support and one of my daughters friends offered to be my carer so that worked beautifully, but was only for a short time.

I’d had a stroke on the operating table, but a separate incident resulted in me ending up in a wheelchair. I was at an aged care place and a power wheelchair reversed into me and broke my hip. That was a terrible experience.”

“I was with another company before when my daughter suggested Headstart would be better for me. I am so fortunate that I now get support seven days a week. Several days are with Katja.”

“Joy actually had her first shift when I had mine!” says Katja. “It was 28 April, two years ago. We were both nervous beforehand and we were both so relieved when we met. We just clicked straight away, from day one!”

“Recently Joy’s hours increased, and I’ve noticed how much she improved since then. On Sundays Joy would just sit at home or be in bed without visitors. Joy is a fiercely intelligent woman, interested in life and it’s just lovely. I think that when her sharp, active mind isn’t stimulated she can get depressed.”

“My two daughters live in Newcastle but always have something on with their kids and are incredibly busy”, says Joy. “They both live in Mayfield but I’m not able to access their house because of the stairs, so we meet them in other ways.”

“My role has partly become to help Joy with access to her family”, adds Katja. “We quite often arrange to see all of them together. We meet out somewhere or if we’re in the car they come out and we’ll gather some chairs round. It’s great for Joy to see her grandchildren and her daughters are incredibly grateful. We just have to be creative in making it happen.”

“I do physio every Friday. It involves pilates, the bike and even some boxing gloves, which I rather like!” says Joy. “Today I’m going to be joining a gym.”

Katja adds “After this interview we’re going to Breaking Boundaries for the exercise physiologist to create a program, and then next week we’ll go to the gym and carry that out. The idea is then Joy can go exercise any day she feels like.”

“I’m looking forward to it,” says Joy. “I love to get out of the house. Headstart’s a wonderful company with such good people. I do art therapy every Tuesday. My eldest daughter is a brilliant artist! She is amazing so I shouldn’t compare myself. I tried singing class for a while but that’s not my thing, even though one of my other daughters can sing and has even made her own CD. I realised that I can’t sing so I moved on to art instead. I go to Newcastle Music and Art Therapy in Warners Bay every week and Miriam is my art therapist. She says I’ve got a good way of combining colour. Miriam and I get on really well.

We use paint pens and paper. The one I’m working on now is called ‘The High Tea.’ I just tell Miriam the ideas that come to me, and then she does the sketches of the shapes and people and I do the colour.”

My art therapy is one on one, which is good for me. I’m not really a group person. The hour does go pretty quickly, I keep telling Miriam to set the clock longer!

“We’ve started to think about getting a little exhibition happening for Joy at some point,” says Katja. “Maybe in a café where they display art.”

“Visually my right eye is brilliant, but my stroke caused the peripheral vision on my left side to be non existent,” says Joy. “My long-term memory is a bit fractured as a result of my brain injury, while my short term is OK. If I’m watching a movie and it’s too complicated I have no idea what’s going on.”

Katja adds “But having said that, Joy basically gave up on going to the movies for many years. I think once you get to aged care facilities, activities like going to the cinema dwindle away. But we’ve actually started to go to the movies again which has been great.”

“Joy wanted to do more day trips like getting out to see different things. We’ve been going to the country for outings and this Sunday we’ll go to Shoal Bay. We visit art galleries and we’ve also been going to the theatre to see comedy. We went to see Kitty Flanagan and the dance show Burn the Floor. All things that Joy was just not doing at all.”

“Don’t forget John Cleese,” says Joy. We’re going to see him when he comes. I’d love to see Carl Barron when he’s back next year. Carl’s my favourite!“

“Recently Joy had a night away with her whole family in the Hunter Valley. It was the first time she’s been away in years.” says Katja. “I can see how Headstart’s support has really has made a huge difference for Joy with things like this. We laugh a lot. Joy has such a wicked sense of humour and when we’re out together we literally laugh all the time!”

Of course, with Joy there’s a funny story for every situation. Sitting in a café for this interview, Joy enjoys a glass of iced water alongside her cup of coffee.

“I have this water with ice regularly because ever since my brain injury it’s like having the desert in my mouth,” explains Joy. “Once I was in this aged care facility which had an ice machine. The usual staff person who got me the ice wasn’t on duty that day, so I asked the new person to please go and get me some ice. She just stared at me surprised. I said, “Well, go on!” She said “Well, I’ll have to ask someone about that.”

Then I realised she thought I meant illegal ice! So from then on I mention legal ice. I’ve got to make light of things.

“I’ve never thought I was that funny. When I was married fun was not part of my life but thankfully that’s changed.”

“I’ve always been curious, so I might spend hours on YouTube researching the latest on health. This morning I was looking up breathing techniques. I like to keep learning.”

“I love languages. I’d still like to learn another language. I speak French and German though not fluently. I was always good at languages at school. For some reason my brain has kept that side of things intact.”

Katja concludes, “Interestingly, my mum was a language teacher. She taught English, French and German. I can remember a little bit of German so sometimes we’ll have a few sentences of various languages. But she’s far better than me! Joy’s curiosity about life and sense of humour are so inspiring to me and everyone she meets.”

“My firstborn son, Bradley, was born in 1999 and diagnosed with severe autism at around 12-18 months. Then in 2002 Christopher was born also with severe autism and he struggled with speech. The next 17 years was spent looking after my sons, together with my wife who I’ve since separated from. My stroke happened in July 2019. At the time my girlfriend and I were living at my Aunty’s place just up the road from Maitland hospital. They called an ambulance and I can only just remember being at the emergency department and next thing I knew I woke up a few weeks later at John Hunter intensive care. I’ve only got flashes of memory from those weeks. I was then transferred over to Rankin Park for around six months.

By then I only had part of my skull and what they call sunken skull syndrome. It was strange looking in the mirror because my head wasn’t round on the one side. After discharge I was supposed to wear a bike helmet around but I was silly and only wore a cap. It’s only now that I realize how dangerous that was.

I was out for five or six weeks when I fell really crook with an infection and had to be readmitted to Rankin Park. They put a plate back in my skull and it took another three months to recover as best I could.

I couldn’t even get out of bed at the start. Then we got to the point where the nurses were getting me up and I was getting around in an electric wheelchair. A couple of weeks later I started getting around with a push chair. A few weeks after that I was in a walking frame for two or three weeks. HBIS looked after me straight out of Rankin Park where I had speech therapy and physiotherapy and occupational therapy, and they’re really good.

I used a walking stick when I actually moved into this house. I also had a commode chair and some things that I really didn’t need. I’m happy that I made good progress fairly quickly.

My stroke was a big change but it probably saved my life considering the things I had been involved with back then.

My SIL accommodation is great and serviced 24 hours a day. They say you should keep it professional, but you can’t help becoming mates when you’re with someone for so long. That’s just the way it is. You become friends with your house workers. They drive me to Headstart the days I need to be there.

I don’t get support from family and friends. My only soul friend is my housemate here, and it’s more like a father son relationship as he’s younger than my own firstborn son. I’ve been intent on reaching my goals and started the process of trying to get my license back. My house leader helped a lot with organising the car and the driving lessons. I got my L plate license and they said that I needed ten driving lessons. We were up near Raymond Terrace and the instructor said “Pull up on the shoulder please.” I thought “Oh no. What have I done?” The instructor says “Listen, Jay, there’s no way I can rip you off by making you do another six lessons because you can drive just as well as I can!”

Next the OT driving assessor came for a drive and she shook my hand and congratulated me for doing so well. That surprised me and made me very happy!

I got my unrestricted, manual drivers license about four months ago. That was my big goal achieved after leaving hospital. My next big goal is to purchase a car. I’m just waiting for money to be released before I spent time looking for a car.

I manage epilepsy with medication though it’s been over 12 months since I had an issue. To be able to get a drivers license there needed to be a long time since any seizures. I have been doing physio and gym but my funding was cut so I just walk a lot more these days.

I still have speech therapy every couple of weeks. Kate my OT recommended I attend Headstart’s Recreation group two years ago. I’d be lost without Headstart. I’m not being dramatic but I think it’s the reason for me to get out of bed. They’re all good people and Nikki’s brilliant too.

I can relate to many of the people. Some are just like me and don’t always want to be talking flat out the whole time.

Ten pin bowling, the Army Museum at Singleton, the Fernleigh Track, there are so many things I’ve done. I love it all. I’ve especially enjoyed Headstart’s photography class. Each month when I get the Rec calendar I grab a highlighter and every day there’s something I want to go to. I really enjoy the social aspect and just getting out of the house.

It’s going to be awesome when I get my car because I can get out without having to walk to the bus stop. I’m looking forward to being independent and not have to look at bus timetables every day.

It was very isolating after my stroke, when you were in a certain crew and then that group just leaves you in the lurch. It’s very lonely so I’m thankful for my SIL house and Rec group.

I have Community Access to ten pin bowling at Charlestown. It only costs me 8 bucks and my carer gets in for free. This is my main game and I prefer to be indoors because I get a bit hot out in the sun.

After getting a car I’m aiming to find some light work. I’m a qualified Pest Controller, but I really don’t like the job of getting into roofs all the time and it’s too bloody hot! Maybe shelf packing or something that doesn’t get my heart rate up too much or hurt my head. Lately I’ve been getting these throbbing headaches for the last six or eight months. That’s something I’ve got to get on top of so that I can work easier. Post stroke the headaches are the main thing affecting me. My right arm and leg’s probably not as strong as it should be, but it’s strong enough to get my license.

At home I watch a lot of YouTube and also real crime documentaries, like Jeffrey Dahmer and Ted Bundy. I don’t watch many movies or going to the cinemas as I like to be able to pause it or walk away and take a break. I also like NRL, watch a bit of cricket, not much other than that really.

I enjoy Guns and Roses, Pink Floyd and The Highway Men. They’ve got Johnny Cash, Waylon Jennings, Willie Nelson, and Kris Kristofferson. I saw them in 1992 in Sydney and they were so good. You had Willie Nelson up there like smoking a joint on the stage in front of everyone. Willie is such a character!

My message to people is to never give up. It can always get better. Just keep on going and reach for the stars.

When I first met Jay he could hardly walk. He had no endurance and his balance was really poor. I look at him now and I can’t keep up with him. Jay has come a long, long way!

- Nikki,

Rec Coordinator