Marg was there when her son Mark had his first episode of psychosis five years ago, and has been part of his support network ever since. Mark’s road to recovery has meant building a new life for himself, and supporting others impacted by mental health issues.
In celebration of Mother’s Day, here Marg and Mark share things they’ve learnt along the way, the importance of empathy and the need to support carers in their journeys too.
MARG: As a mother you want a happy and fulfilling life for your children. However, life doesn’t always work like that. Life is full of challenges, perhaps the greatest of which is negotiating your way through the highs and lows as a family and continuing to grow together.
The greatest sadness for a mother is to see your children suffering and feel that there is nothing you can do to help them.
Our most challenging time as a family has been our journey with Mark through his adjustment to a complex mental health condition.
At 30, Mark had his whole life mapped out. He is entrepreneurial, has a doctorate and had a successful career. He was happily married to his partner, the love of his life. He always had time for me. We would brainstorm ideas together. I’d phone him with questions about technology, and he’d help me out.
Mark’s first psychotic episode was just five years ago. It was a huge shock to us. He wasn’t sleeping. He was on the go 24/7. We were flat out just keeping up with him and trying to keep him safe. We knew he was very sick but it was hard to get help, or get him to help.
I felt terrified, bewildered, overwhelmed and powerless. Finally, we got the Community Mental Health Team involved and they visited him at home with the police – six police in all their safety gear, three police cars. Fortunately, he went with them willingly.
I sat with him in hospital while he was in his own terrifying world. All I could do was sit with him.
This was the first of many episodes where we found it really difficult to get treatment when we first recognised early warning signs. Why can’t we get help locally in the community? Why can’t we go straight to a mental health establishment where Mark can be triaged and given appropriate treatment? Why do the police need to be involved? Why does it have to get to a full-blown psychotic episode before we can get treatment?
Mark experiences recurring episodes of psychosis. This has had a huge impact on Mark’s life and the lives of all of us around him.
Mark sadly lost much of his former life – his partner, his job, his career. Mark manages the illness and its consequences on a daily basis, including breakthrough signs of psychosis and the impact of medications.
Mark also shows great determination and resourcefulness on his journey to recovery. Initially it was the joy of listening to music, rallying the energy to get out of bed each day by going to the café or taking a short walk.
Sitting side by side in a library we wrote a book on managing psychosis together. Living in the moment is important, as is celebrating successes.
With a great deal of work, Mark has built a new life for himself. He is working as a peer worker and has gained qualifications in the area. He’s enjoying making small gains for individuals with mental health conditions – gains such as getting music in the mental health ward and setting up and accompanying people to groups in the community.
He’s also advocating more broadly to reduce stigma and discrimination, including participating in district health promotion campaigns. He has regained his zest for life and love of learning.
I admire Mark for his tenacity, for his ability to face up to the implications of his mental health condition and the devastation of losing much of his life and having to reinvent himself. I admire him for picking himself up and I am very happy that he is in the process of building a new life that he is enjoying and finding rewarding, all whilst balancing the complexities of his illness.
I am happy that we have been able to find our way through all these challenges together, learned a lot together and perhaps are richer for the experience. It is a continuing journey, not without challenges ahead.
I feel the greatest pride that my sons have grown into fine young men who can put themselves in the shoes of others and accept people for who they are.
They have their own lives but we have also grown together, shaped largely by the joys and adversities we’ve shared and work through together.
MARK: As a kid I was always close to my mum, and to her mum too. My poor mental health as a teen and then again when I turned 30 really created some rifts though. We have both worked hard not to forgive and forget, but to learn and heal.
I've experienced extreme highs, extreme lows and intense psychotic breaks. Collectively these are known by some as schizoaffective disorder, and by others as bipolar.
I'm somewhat lucky though because my symptoms while acute are also temporary. They can't be easily predicted, but Mum is a big help to noticing if they might be coming on. We still haven't figured out a gentle way for her to acknowledge my symptoms and help me get the right help quickly. Still, mum has been an essential part of my plans if I need to get out of crises.
Now that I work in mental health myself, I can see the key role carers and support people can play in enabling recovery. Mums often play a special role as carers of people with complex mental health challenges.
Sometimes they also put a bit too much effort into care and may forget to care for themselves. As someone with an ongoing mental illness I have felt in the past like I understand how hard it must be for a carer, but also felt that it's ten times harder for me actually going through it.
I certainly felt love, care and sympathy from my mum at each stage of my journey with mental health issues. But I'm not sure if I often felt true empathy. Unless someone has felt your exact symptoms before, they can never really walk in your shoes. They can walk alongside you, though, like my Mum did.
There are times where I pushed my mum away because I felt I needed to in order to help us both. Most of these times, though, I misjudged this and caused everyone pain. I couldn't walk in her shoes like she couldn't walk in mine.
I am blessed to have had a wonderful and supportive husband while I was very unwell. Mum and my husband could talk to each other as they were going through similar things trying to support me.
As my illness entered my brain like a toxin, it also polluted those relationships. Sometimes a bit of distance from each other was needed, but had to be followed by some hard work tackling the problems head on.
Mum still talks about the old me before my acute episodes. She experienced grief and loss about me losing my old identity, but not as much as I did. I resolve this mostly by focusing on what new has come out of this. In my daily work at a large hospital, I share my stories of illness and wellness to try and help others going through their own challenges.
I'm not fixing problems, I'm walking alongside people. I'm showing them they're not alone, just as Mum did for me.
Mum stood by me despite my problems, which caused problems for her too. Not enough people acknowledge the role of carers and don't see the pain a mother feels when their child is unwell. Services in Australia clearly need to better at providing support to carers like our brave mums.
Mother's Day has always been about recognising the special role that Mums play in our lives. Mums who care for people with complex mental health issues need both recognition and also action to have better access to funds, education about symptoms and treatments, as well as more time off.
Let's care more for those who care and support mums everywhere.
Marg and Mark have co-written a book, Managing Psychosis: an Australian Guide, available in Kindle, paperback, and hardcover on Amazon.
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