Behind The Wish - Jess Zammit

I have always loved volunteering. Since my diagnosis for Parkinson’s disease my whole mindset and outlook on life has changed. Not that it wasn’t positive, but now it’s gone next level. I have really realised what’s important.

The job I was doing I loved it, I did it for years. But if I have got the opportunity to help people in my work as well as my personal life, then why wouldn’t I be doing that already! I think the Parkinson’s has helped me make that step.

This new job I started this year is right up my alley because it combines all the skills I have learnt in my previous job managing shopping centres. How to deal with people, how to write strategies. So I get to use my skillset from my previous employment and combine that with the skillset I have learnt from all the volunteering I have done – that passion of helping people – in my job.

I am running the volunteers program at the University of South Australia Student Association and writing strategy for that.

With all the skillset I have learnt from my last job and Make-A-Wish, it’s almost like they wrote this job description for me.

I am working closely with their events marketing team and working with other departments, so there’s all this scope to own it and grow it and help these students at uni.

To be able to help these students and other students grow and use my experiences from what I have learnt to help them and give them opportunity, it makes me really happy

Working three days a week has also allowed me to look after myself, focus on my health and focus on other things I want to do to help people in the community. I have started working on a blog to help people with Parkinson’s. I have a graphic designer working on the logo.

I applied for a job in Melbourne just before COVID hit. I didn’t get it, I got down to the top two. I even had to write a strategy for the shopping centre I would be managing.

At the time I was absolutely devastated. I could do the job hands-down and I wanted to move to Melbourne. But then COVID hits and my Parkinson’s got diagnosed.

And all of a sudden I realised the universe didn’t give me the job, I wasn’t meant to be in Melbourne. I was meant to be in Adelaide where I have my support network.

It would have been awful for me. I am a big believer in the universe and things working out how they are meant to.

I think seeing how other cultures live really makes you so appreciative of where you are from.

I think my volunteering experience in Peru really brought that home.

I went to Peru for six weeks and we were in a community where we helped them paint, taught them English, how to generate their own income,

I taught kids dance. Just being involved in that different culture. They lived in huts with dirt and guinea pigs and they have got nothing yet they are trying to give you some of their nothing. They are the happiest kids I have ever met yet they don’t have anything.

They didn’t have water some days. But they were the most happy and generous people I have meet in my life. So, it was another wake-up call about how lucky we are.

Every now and then when I have a moment, my mind goes back to Peru.

One of the things when I got diagnosed with Parkinson's that I’m really grateful for is I already had that mindset of ‘live your life’.

Do what you want to do. I already had that. But now I have got it ten-fold.

I was living life to the fullest. I had done more things than people would do in their whole lives. I had the attitude if you want to do something then go make it happen.

Now with this diagnosis it has given me more drive and gratefulness for life.

Don’t get me wrong, at the beginning it was like ‘universe what have I done to deserve this?’. I didn’t know anything about Parkinson’s and what it meant for me. There was this panic moment. I knew it wasn’t fixable, there was no cure for it.

My first reaction was to cry. Tears. But then also relief. It probably doesn’t make sense because you’ve been diagnosed with this disease that’s degenerative and going to get worse and worse over time. You’re not going to be able to do things you can now.

But I had a label, because not knowing is even scarier. A lot of my symptoms were the same for people with brain tumours. I still consider myself lucky it’s Parkinson’s and nothing worse than Parkinson’s.

It is hard for a lot of people to comprehend.

But even though I’m pretty scared about the future, I would not take Parkinson’s away. If you told me we could go back in time and I’ll take it away from you, you won’t have to deal with it, I would tell you no because it’s made me who I am today. It’s just something else that’s shaped me and changed me for the better.

The last two years have been tough, I am not going to lie. They have been hard. Some people see these tears and think of the bad days.

But even the people I have already helped because of my diagnosis I am grateful for that. I wouldn’t have helped these people if I wasn’t diagnosed with Parkinson’s.

And all the things I want to do, this change in my career, and the Parkinson’s blog I want to do.

I had coffee the day before with someone who was diagnosed with Parkinson’s 18 months ago who said she’s feeling really lost, so I had coffee with her and her husband the gratefulness from them and the hugs they gave me … these are people I wouldn’t have helped otherwise.

I feel that I am going to achieve a lot more in my life and help a lot more people than without this diagnosis. It sounds crazy and it’s hard, but I wouldn’t change it.

It’s different for everyone with Parkinson’s but I know what symptoms I have got now and I can only assume that those symptoms are going to get worse.

I might even get new ones that I don’t have yet. There’s not time frame for it.

How you progress is individual to you. Even though the diagnosis is only just over two years old, I have been told that I have had Parkinson’s for five years.

You look back to when you first had symptoms to how you are now and that time period, you plan like that. That’s as good a guesstimate can get.

Things are going to get harder and harder to do. I already have a support worker who comes around and helps with cooking and cleaning.

And she’ll do more and more hours and days to help me. As time goes on, I’ll need more help.

The medication helps a lot but the medication will only end up doing so much as the symptoms progress. The noticeable thing sometimes is my hand, I get a tremor and it’s hard to use. It’s hard to cook, to do chopping.

But fatigue is a symptom you don’t see. I don’t sleep well because of the Parkinson’s.

If I can do all the right things, I can slow things down but I can’t stop the train. The train is going. All I can do is look after myself and try and slow this bastard disease down.

I realise there are things that I won’t be able to do. I have got a bucket list.

I was sitting on the couch with some girlfriends and said, ‘damn I won’t be able to drive one day’. I already knew it, but it was just the realisation. So, of all of a sudden, this list started to be formed.

I was away with some friends, and we were having some drinks and I got upset because it occurred to me, I might not be able to achieve everything on the list.

So, I went to the bathroom and freshened up and came back and my three beautiful friends had my phone and they each contributed something to my list for me to do with them.

So, the list isn’t only about me. If you have got something that you really want to do and for some reason something’s stopping you or you have got no one to do it with, I will do that with you, let’s make it happen. I want to help people find a way.

I always try and find the silver lining. I was on a trip to Melbourne and one of my closest dancing girlfriends was on this trip too and we went to the theatre. It was the end of the show, but my dyskinesia (involuntary movements) started to happen and my arms and legs moved uncontrollably. It hadn’t happened much before and I was very upset.

But my friend just got me out of there and we were in the back streets of the Melbourne theatre district, and she said ‘honey, let’s dance’ so we do.

I am not dancing well because dyskinesia is making me move but she’s dancing with me. And she’s ‘let's dance to Taylor Swift’s Shake It Off’ and we were laughing. So, I think the dancing will help me. All the dancing I did made my balance and strength good and that’s only going to help me. You've got to find a silver lining.

I feel that I am going to achieve a lot more in my life and help a lot more people than without this diagnosis. It sounds crazy and it’s hard but I wouldn’t change it.

When I came back from London and was settling back into Adelaide, something was still missing. It was that volunteer aspect. I was like, I want to volunteer so what’s around. And I came across Make-A-Wish. It was pretty much that simple.

Before you were a volunteer you had to go to three meetings. What I am grateful for is I was allocated a buddy and that was Frank Jackowiak.

When I got to be on my first wish it was very exciting. I don’t think anyone will forget their first wish.

My first wish was for a young boy.

My first home visit was with Christine, another long-term volunteer. People probably say their favourite wishes are the really extravagant ones but I don’t agree with that. Your first wish is always very special. When we presented the wish, I remember driving away in tears. Just because of how amazing it was.

The wish child and family were so grateful. When a family really appreciates what you’ve done for them it just blows your mind.

There was no question what he wanted, he absolutely loved gaming. His favourite subject at school was computing. He was wanting a PS4 for so long, unfortunately his mum couldn’t afford it for the last couple of Christmases. It was just a PS4, one of the simplest wishes I have been involved with.

What we did though is we didn’t just get him a PS4. We got all the stuff to go with it. Everything was wrapped up separately and we had the wish reveal at his favourite place to eat, Kwik Stix, with his family and friends.

We presented the wish over dinner. He opened each present and we also got him a voucher so he could buy the games he wanted. I remember him looking at his voucher and going ‘This is for me?’ and I was like ‘Yeah’!

He couldn’t believe that it wasn’t just a PS4 but everything else and a voucher too. The hug I got from the family after the presentation was just priceless. It doesn’t matter what the wish is, it’s always special.

It a special hug. The appreciation. Especially families like this where the mum would have bought him the PS4 if she could afford it, but she couldn’t. So, for us to make that happen is really important in the wish child’s life.

The wider community is so important - without donations, we can’t make it all happen. The children choose their wish, and the Make-A-Wish staff and volunteers make it happen, but the people who donate make it possible.

Make-A-Wish is part of me. If I am not volunteering, something is missing. I feel a bit lost. I ran two high tea events, two years consecutively, while working full-time. The first year we had 500 guests. It was a professional event, so you name it we had it. Running that and working full-time was crazy.

We made a profit of about $20,000 each year we did the high tea!

I was quite burnt-out after the high teas. I took a back seat for a few months, went to meetings and still did wishes but didn’t over-commit. But those few months where I took my foot off the pedal something was missing.

So, volunteering is part of who I am. It’s part of what makes me happy because I do get something out of it. I know I have helped to make a difference in the lives of people less fortunate than me. Not just the wish child, but the family.

The wish child gets a wish, but we always include the families.

I have spoken to families since and had them speak at different Make-A-Wish events and they have said the effect of the wish goes beyond the difficult treatment period, it is everlasting.

A wish father was presenting at an event and said he had not one but two children who had wishes, which is heart-breaking.

But he also said years later the effect of the wishes was still having a positive impact on their lives. His little boy was now more confident and did play sport, which he didn’t before.

I eventually want to have my own charity for Parkinson’s. I can see the impact I could have, because of all this experience I have had with Make-A-Wish.

I was President of Adelaide Make-A-Wish during COVID times.

And it was straight after the Adelaide Branch split into three branches.

What I loved about being President is that I got to have a lot more contact with Make-A-Wish national office and just grow a lot myself. It was challenging, keeping people engaged during COVID, but definitely a valuable experience for me.

I didn’t want to give it up but because of my health I needed to stand down after two years. I also wanted someone else to have an opportunity.

With fundraising, I wanted to do more than what we were doing as a group. So, the first opportunity that came up was when Make-A-Wish offered a 5-day trek of the Great Wall of China.

You raise $3,000 for Make-A-Wish and do the trek. I was like this sounds amazing. So, I did that and raised over $6,000. That was just phenomenal, I really bonded with the people who did it. They were all there for same reason. I made lifelong friends out of it. I met my bestie, on day one.

Then in 2022 was the Larapinta Trek. As soon as the email for that came out, I was in. It’s 66kms over 5 days.

I was conflicted though because my Parkinson’s diagnosis was pretty fresh.

So, I had this feeling I should be fundraising for Parkinson’s, but my brother (pictured above) was the wise one at the time and he said ‘Make-A-Wish is so special to you. What are you worried about; you have plenty of time to do Parkinson’s later’.

So, I was in and doing it.

The goal was to raise $3,000 then I raised more and suddenly I thought I should try and raise $10,000.

I really wanted to make an impact.

I remember in 2022 we were on the Larapinta trek and having a rest and we didn’t really have reception during the trek, but this place we were at we had reception that would cut in and out. I got signal and thought I would check my fundraising page to see if anyone else had donated.

I checked and I had hit that $10,000 mark. I was so overwhelmed that without any special contacts or anything, I managed to raise $10,000 through family and friends. It was just sheer effort.

The hardest part of the trek was the end of the first day. It was hard. It was hot. And I overheat anyway with this disease. I wasn’t hydrated enough, and I ended up vomiting on the track.

One of the other volunteers was having a really tough time, she was breaking down.

So, I was trying to support her but was stressed about myself at the same time. I was at the bottom of the mountain and at that point I just stood and started crying.

One of the guys caught up to me and he said, ‘talk to me’ and I said, ‘I’m not feeling well’ and he knew it was more than me just not feeling well. So, we sat down on the mountain and my Parkinson’s symptoms were playing up and that freaked me out.

I just said ‘it’s day one, I am scared. I am hot, I vomited, my symptoms are playing up’ and ‘how on earth am I going to get through another four days of this’. And we had a really good chat and sometimes I just think you need a really good cry. You need to take a moment.

There were quite a few moments on this trek. But day one was the real tough one where I had to pick myself up. I had to dig deep as there was no way I was going home without doing the five days.

It didn’t sit well with me, that I might not complete the full 5 days. I worked through this with my specialists before the trek, worked out different techniques to help me through my journey, and got my head in the game.

After four days of trekking, on our final day, we started the 8km climb up Mount Sonder at 2.30am. Yes, in the dark, with our head torches on, and our walking poles, and don’t forget we carried our day packs every day too.

We got up the top of the mountain in time to see the sunrise! It was absolutely spectacular, magic in fact. When I saw the sun come up, I cried, happy tears, lots of happy tears, I had done it!