Diagnosis and treatment

I grew up on a farm in country Victoria, surrounded by bush which is where I go to reinvigorate myself. Moving beyond Australian shores early in my twenties lead to a love of Nepal and India and ultimately to marrying a man from Afghanistan in Sydney in 1997 and having two beautiful daughters. My love of language and connection became my vocation, first as a speech pathologist for six years, then as an English language teacher and trainer to overseas students and more recently to refugees and migrants.

Our youngest daughter Ari was diagnosed in June 2015 with a bilateral frontal brain tumour. So began many months of intense intervention. I’ll never forget our first visit with neurosurgeon Dr Charlie Teo and him talking to us dead straight, no softeners. Do nothing and Ari would be unlikely to survive to the end of the year. Do a biopsy and take the path of chemo and radiotherapy, and medical intervention will become part of our life. He also said it was very unlikely that Ari’s short-term memory would ever come back.

We took the second option, as to do nothing was not even a choice.

I’m very glad that I hadn’t had much lived experience of what this kind of intervention meant. Ignorance allowed us to simply survive by putting one foot in front of the other. The early outcomes for Ari were that her short term memory was lost, her communication was greatly compromised, and executive functions like planning and organising were very limited. At that stage Ari, once a talented runner, could barely sustain a jog for 20 metres and was unable to sit still for more than 5 minutes. But, finally, at the end of 2015 she was tumour free.

Finding ways to nurture myself

This past four and a half years has been an experience that continues to have raw grief and joyful hope sitting alongside each other. This reflects the paradoxes of brain injury, because none of Ari’s experience can be rationalised. It happened and we’re living through it now. I became a hypervigilant warrior woman. It was so hard to let go and trust that anyone could look after our beautiful girl.

Finding ways to nurture myself has been challenging but also very rewarding as I appreciate moments much more now. Mindfulness practices have really given me an anchor in a very rough sea and have given me the space and the chance to refill inside.

What nurtured me in those early stages was the wide, wide network of love and caring that stretched from the little country town of Yea in north eastern Victoria where my mother still lives, to our family in Melbourne, to Sydney, and to the prayers of many at mosques in America and Afghanistan. We were being held by family and friends and the wonderful staff at the hospital who became our lifesavers. My faith in humanity leapt as texts to check in on us flew in every day. Neighbours left casseroles and cards on the doorstep, when we wearily returned home to crash exhausted each night. I found a mindfulness CD from the Cancer Council to be immensely sustaining at night in bed as I tried to process the events of the day. I will always remember these words from Dr Lis Lane: ‘There is nothing to be fixed in this moment. Simply allow your experience to be your experience without needing it be other than what it is.’

I also met a couple of close friends weekly at a little bar at St Leonard’s Station and over gin and tonics, I had the space and permission to say it as it really was, no pretending, no putting on a brave face, the space to be vulnerable.

Creating "Team Ari"

In the early days, when I met Lauren from Synapse, Ari was an outpatient at Royal Ryde Rehab. The NDIS was just rolling out in northern Sydney, no one seemed to know anything about it at all and there certainly seemed to be very limited services for Ari. Lauren provided incredible practical support in helping me put together Ari’s first NDIS plan. That support continues with Synapse through our support coordinators Sharon and Jasmina, and Michael who painstakingly help us go through every NDIS iteration. They stand beside me as warriors for Ari’s wellbeing and needs and her right to live as full a life as possible. So we are now a warrior team, and that’s immensely supportive – we are not alone.

What nurtures me is when I can just hang out with Ari and be her mum. Not her therapist, not her personal organiser, not her medications checker, just her mum. A morning recently spent swimming and then wandering round the Botanical Gardens with Ari was lovely; simple, unhurried and sweet. These times are rare, however, because of the constant juggle between work and home. I feel guilty when I’m at home and have all this organisation to do around Ari but when I can’t be wholly present with her. The hardest thing for her is to occupy herself without any prompting from someone else.

It took two years for me to take time out and go away for five days without Ari. This was possible through growing a support team, “Team Ari”, which I trusted and could rely on. By going away I was not only giving myself time and freedom but giving Ari the time and space to develop her own identify and negotiate relationships without me; this is really important on an ongoing basis.

In March 2017 I went to Tasmania for five days and stayed in a cabin at the foot of Cradle Mountain with some dear friends. Every day we walked for about 6 hours – hard physical exercise. It was just wonderful because all I thought about was putting one foot in front of the other and I was able to be very present to the delights of the wilderness. There was no mobile reception so I had to let go and trust that Ari was okay without me which of course she was.

We have come a long way

That experience away inspired me to go on a wonderful trip to Kakadu and Katherine Gorge in June 2018 which included a difficult but spectacular five-day walk with heavy packs on backs. Again, the physical challenges really grounded me. Life was so full of beauty. I didn’t worry about Ari because there was nothing that I could actually do. Our guide had a satellite phone, so I knew that if necessary, someone could contact me.

The last time I went on an overnight walk to Colo River in the Wollemi National Park, Ari actually went away herself overnight with a friend and a support person. She found this independence very exciting.

And finally over the last three years I have nurtured myself and my relationship with my eldest daughter by going away for a long weekend to celebrate her birthday. Nothing can really compensate for the lack of time I have had with her over the past four years but at least now we have the chance to climb mountains together, go to wineries and seek out other such adventures and pleasures of life we both enjoy.

Ari is now doing work training three days a week and she volunteers as a coach with Little Athletics. She also helps prepare meals for migrants and refugees once a fortnight. She has just started going to a local hip hop class where she has had a very warm welcome from the teachers – they love her passion and enthusiasm. Ari and I threw our hats over the wall last June and went to France for three weeks. Ari found the heat and the constant travel exhausting, but she loved the trip and so did I. It showed me that we can continually push the boundaries and stretch the limits of what we think is possible.

We’ve come a long way but hard times are not over. There are challenging issues to work through in the future such as independent supported accommodation and financial security for Ari.

Hopes and dreams, however, are there to be fulfilled. Hawaii has long been on Ari’s bucket list so maybe it’s time now to honour that dream!

Our December 2019 Synapse Carers information session: Nurturing yourself and mindfully living your experience: a personal account. A conversation with carer, Meredith Lade, alongside mindfulness and yoga instructor, Amara Saraswati.