The Music of an Astute Mind

It’s Mental Health Awareness month here in Australia. I often shy away from campaigns. Yes, more awareness is helpful to the general public, but it is also triggering for the sufferers. Instead, I’ve been finding refuge in an old favourite pastime: music. Why music? It expresses what the soul cannot put into words. Let me elaborate.

Growing up, most of the music I heard and was taught at school centred around communism. Songs of praise, songs of pride, songs of revolutionary war. There were brief moments when I heard songs of times gone past in secretive places. These songs were so very different. They described nature, they brought poetry to life, they were thankful and hopeful for culture and tradition to be passed down.

It was 1996 when I was first introduced to music of another kind. We sang about kookaburras sitting in old gum trees, the open wides and come insides, and the wake up Jeffs. To say that I was amazed is an understatement. Then came 1997, the year of the Titanic, and my first introduction to how music is used to express love. How does a heart go on indeed, without such beauty in song?

Music class 1999. I was 11 years old, soon to turn 12. Our music teacher played us Billy Joel’s “The Longest Time”, and I was hooked. Life no longer made sense without music in it. I begged my parents to let me learn a musical instrument, and they got me an ancient German piano for very cheap. It was completely out of tune and we didn’t have the money to tune it, but who cared. I half taught myself the piano, together with random lessons here and there. When my parents were better off financially, I picked up the flute as well in high school. That was 2002. By 2004, I was doing AMEB grade 8 piano and AMEB grade 6 flute.

My favourite piano music was actually Baroque pieces by none other than the great Bach himself. They had melody, they had counter melody, they had a bass, they had structure and they were a joy to play. I eventually gave up the flute. It really wasn’t me. As an adult, I picked up the cello, and I’ve been in love with it ever since. I’d rather play cello than the piano any day, but no Pachelbel please. One day, I will play Schindler’s List. Listening to it brings such melancholy and sorrow, but an innate sense of wonder and beauty too.

What do I think and feel nowadays when I hear a revolutionary communist song? It was all a lie. There was an entire universe of music out there waiting to be discovered.

Two years on

Two years can change the world. The day after my eldest turned two, my youngest was born, and life was never the same again. In two years, I went from a new graduate nurse to a nurse now with many hats: specialist nurse in oncology, private practice nurse for a medical consultant, and a nursing clinical facilitator for a university. We have lost a grandparent, a friend, a friend’s mum and a little girl who knew, all to the grasps of death.

I grieve for the father I lost two years ago, not to illness or misadventure, but to a bitter divorce. He chose to lie and betray us, for the want of another family. My children have also lost their grandpapa and his involvement in their lives. No clues, no warning, nothing at all to indicate otherwise. It is sad and disappointing, and it is grief of a different kind.

My eldest picked up his first cello two years ago, a tiny 1/10 size. He now plays first cello in his primary school’s junior strings group on a 1/8 cello. He’s grown to my chest height before I knew it. My youngest began intensive speech therapy two years ago, with an estimate of just 0.4-2% of functional language. He’s now at a mainstream school full time with about 50% of functional language and cheeky as anything. Two years change a lot.

What did the world look like two years ago? The Rohingya crisis, the Brexit referendum, the fall of ISIS, Trump becomes president of USA, hurricanes, missiles, depression. What will it look like in two years’ time? The 2020 vision touted by governments and businesses alike would already be a thing of the past. Global climate crisis would be recognised. We would all be older, wiser and more humane, hopefully.

Belonging

Four months ago, I returned to the country that I swore I would never again enter. Four months it has taken me to be ok with processing that particular journey. The advantage of having an autistic mind is that I can package memories away into mental compartments. These will stay pushed aside and locked away, until I feel ready to process them in a safe place. The disadvantage is that if any of these memories are traumatic at the time, then the trauma will resurface at a much later date. So it was with my childhood.

I left those soils for good in the July of 1996. With the promise of a new life in Australia, I did not know what to expect, apart from both fear and trepidation. It did not take long, before I found out what happiness meant. I gained an appetite and finally put some decent weight onto my skeletal frame. My hair thickened out. School was no longer a dark place of abuse. I could sleep soundly at night, knowing that I would always greet a new dawn.

In September of 1999, I did return to the country I had left, not of my choice though. Mum took me and my young sister for a month, as no one in the extended family had yet met her. I felt safe enough, but I became so homesick. All that played in my mind was Dorothea Mackellar’s “I love a sunburnt country” poem, like some sort of nostalgic radio loop. I longed to set foot on Australian soil again, back to the life I now know and love.

It was early 2005, and I was thick in the mist of Year 12, yet I again returned. This time, with my high school band on a two week music tour. I felt sheltered and protected, because there was a particular purpose to this trip, and I travelled for that purpose. I had friends around me too. I did a lot of thinking on that tour, and not just of music. It was the first time I experienced a really deep gnawing feeling of belonging, and I hated it. The fact was, and remained, that I was trapped between two countries, two cultures, two peoples.

December 2007, and my late grandmother was palliative. She had stage IV metastatic lung cancer. My father literally dragged my sister and I on an eleventh hour visit back to the land I was born in. I stayed just two days this time. I went to say goodbye to my late grandmother, and I could no longer stay. I abhorred the place. I was an adult on this trip and I flew myself back as soon as I could, transiting in a 3rdcountry I had never visited before.

Since 2007, life had gone on. I got married and had children of my own. When our eldest was three years of age, my husband took him to visit relatives for the first time in China. I refused to go, using my university studies and our youngest being just one year old as excuses. Hubby took another trip when his grandfather was unwell, and our eldest again went along. I refused to go. I was in a very depressive state at the time, with childhood memories of abuse fast surfacing, drowning me, without giving me space for respite.

So it happened that it had been well over a decade since I last stood on Chinese soil; twelve years to be exact. This time, mum accompanied us, my husband, myself and our two children. We visited historic and modern places: Xian, Beijing and Shanghai. A tour guide once told me that Xian is the 500 year old China, Beijing the 50 year old China and Shanghai the 5 year old China. Never a truer word. I had wanted to go sweep the grave of my late grandpa, but I did not have the heart to. My childhood was partially bearable because of his kindness, and memories of him are both sweet and painful. I saw my grandma though, now advanced in her dementia, unable to care for herself. That too was very painful.

What did this particular trip teach me? It taught me to be appreciative, and to be tolerant. Being autistic, I absolutely wish to stay away from crowds and crowded places, but that is hard to do in China. I tried hard to teach our children the history of their cultural heritage, and we explored many culinary options. I actually enjoyed being on top of the Great Wall, looking afar into the distance, imagining what it would have been like for the builders at the time, to construct such an architectural grandeur. Standing in Tiananmen Square though, I felt sad, knowing that most of the visitors there were oblivious to what occurred in June of 1989. I reflected to myself: this could have been me, a grown adult seeing a famous landmark, without fully understanding the historic significance of it.

It wasn’t easy to return, to proudly enter China as an Australian, but to have customs probe into why my married English name no longer matched my Chinese name as a child. It was scary to have all my fingerprints scanned and to have my photo taken at every checkpoint. It was heartbreaking trying to converse with locals when I had lost much of my mother tongue, because I had wanted to forget during all my years away. The language had triggered my trauma, more often than not, so I protected myself against it by forgetting it. English is literally my only language now. I don’t think I could have coped at all with this trip had my husband and my mum not come.

So, I am quite decided this time that I would not be returning again for a very long time. I know my grandma will die sometime soon. I know my husband has many relatives waiting for him to visit regularly. I know my children are still curious about their cultural heritage. But I am done. I did what I could, to be ok with visiting the place where my childhood was abuse after abuse. I am who I am today because I had left that place behind. My belonging is now in a sunburnt country.

Dedication

This poem is dedicated to a cancer patient ~

The news could not have been worse,
Stage IV of all possible prognoses.
As your family wept, you were stoic.
What is death, when life has been lived?

You were willing to try everything.
If not for yourself, then for your loved ones.
Yet in your heart of hearts,
You already knew the inevitable.

You watch on as others recover.
Always the patient one, full of hope.
Treatment after treatment,
You fall and become more frail.

A body riddled with diseases.
Tired, and so fatigued of fighting.
You count your days and say your prayers,
Waiting for the ultimate awakening.

Hush now sweet one, sleep in peace.
The sun will rise tomorrow without you.
Your soul will move to another place,
Of heavenly plains and wondrous peace.

You leave behind not one regret,
A life in full you have experienced and lived.
Pains and joys, tumultuous days and nights,
A final calm now replaces all, at long last.

The big C

Cancer. About 4% of Australians are living with it. Many will shy away from acknowledging the trail of destruction it leaves in its path. Not only does it eat away at you physically, but the emotional turmoil it creates is unequivocal, for you and for your loved ones. The Australian Institute of Health and Welfare has just released its most recent statistical report on cancer in Australia, stating in its introduction: “Cancer is a term used for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems.” (Australian Institute of Health and Welfare2019. Cancer in Australia 2019. Cancer series no.119. Cat. no. CAN123. Canberra: AIHW).

Chances are, most Australians are or have been affected by cancer, either directly or indirectly. My late grandmother died in early 2008 from extensive metastatic cancer of lung primary. She had never smoked a single cigarette in her life. In mid 2013, I was diagnosed with a rare soft tissue sarcoma while pregnant with my 2nd child. I chose to keep him and therefore could not have any treatment while pregnant. My tumour was resected in May 2014 and thankfully I am now in full remission after the 5 year all clear. In late 2017, a lovely little girl we knew died from brain cancer, stoically making it to her 6th birthday and her last Christmas with her family. Her death really affected me, and it shook my faith in religion, in humanity, and in the very soul wrenching reality of the vulnerability of life itself.

My own mum was hesitant to undertake screening for bowel cancer, one of the biggest killers of those over 50 years of age, despite it being a government funded preventative program. Our ethnicity also puts us at risk, with cancer of the gastro-intestinal tract being the most common. The fact remains that no one wants cancer to enter their lives. Some will live in denial despite a strong family history and other health risk factors. Others will put screening and diagnostics off. Then there are those who do everything right by their own health, yet cancer springs upon them as stealthy as an endless night.

By fate, or by chance, I am now an oncology and immunology nurse. My own diagnosis brought me here to who I am today, and clarified what used to be an uncertainty. I remember well the minute I sat stunned in a GP’s room, having just been told that I am not just carrying a tumour, but also a baby. I can still relive those 10 minutes I locked myself in a bathroom at work, unable to stop the tears and the sheer fear of not knowing whether I would see my eldest grow up, or whether I could safely deliver my youngest. I can still feel the softness of my 2 children’s cheeks as I kissed them goodbye on the morning of my surgery, not knowing what the outcome would be. It is all memories now.

I chose to become a nurse, because I have been given a second chance at life. I knew that for reasons previously unknown, I had to do something meaningful and be that someone which not everyone could be. As a nurse, I have said goodbye to many patients. There is something truly ineffable about hearing those last breaths, holding someone’s last hours of warm hands, being present for their family, giving them a last chance to smile, providing them with dignity, comfort and a “good death”. There are also patients whom you were a part of in healing. They gain their strength and health back. They go on to live a life worthy of all the pain and suffering they have had to endure. It is a truly dichotomous world being surrounded by cancer. It is hope and it is sorrow. It is joy and it is grief. It is bittersweet.

The month of April

At the end of Autism Awareness Month 2019, it is an apt time to reflect on the rationales behind the ongoing need for awareness.

Functioning language continues to proliferate, both officially and unofficially. Certain health professionals continue to uphold that a child on the “high” end of the spectrum has a better chance at a “normal” life compared to the “low” end. Certain parents beg to highlight that their autistic child is “high functioning”, a differential from the supposed “low functioning” children. How did such language become to be widespread and to some extent, even accepted? This is where I believe the DSM-IV has done more harm than good for the autistic community. While “high” and “low” functionalities have never been official language in the diagnostic criteria, health professionals and parents alike have equated a diagnosis of the formerly known Asperger’s Syndrome to that of “high functioning autism”, and conversely, equated a diagnosis of Autistic Disorder to that of “low functioning autism”. What really differentiated these diagnoses? IQ and verbal ability, again supposedly. The autistic community today strongly refute the use of functioning language as well as the perpetuation of distinction based on IQ and verbal ability alone. We are each to our own an individual. We each have strengths, and weaknesses, and everything in between. We make up a whole spectrum, but we each fluctuate from day to day, as our coping defences wax and wane, as support services become available or withdrawn, and as worldly triggers strengthen or defeat us.

Many in society continue to assume a deficit model of autism. This can be represented by what used to be known as “Autistic Distrubances of Affective Contact”, termed by the late psychiatrist Leo Kanner. This would be later referred to as signs of “classic autism” once the differentiation of “Asperger’s Syndrome” was made by the late paediatrician Hans Asperger. The problem with the deficit model of autism is that it assumed ALL autistic children could not relate to ALL people and objects. Ask any adult autistic group today, and you would hear a very different outlook, one that explains our inability to relate as being due to the inflexibility and unwillingness of society to accept us. When you put like-minded autistics together, then there is no social wall. Given a common interest, we can converse for hours and we suddenly feel alive with the wish, and even need, to socialise. Another aspect of the deficit model of autism which is harming many autistics is the assumption that communication must be in the accepted verbal form. An autistic adult once said: “Just because I don’t speak doesn’t mean I have nothing to say.” (I CAN Network, Humans on the Autism Spectrum 2018). It is only in recent years that society has begun to accept and even normalise other forms of communication. Some autistic individuals rely on a communication program via a computer device. Others like me express ourselves 100% better in written form than in speech form. Others still are constantly observing the world and processing all the stimuli (the inputs), yet struggle with expressing an opinion on what they see (the output). One talented autistic expresses their understanding of the world through art. What a beautiful spectrum of individuals with so many innate gifts that are often overlooked.

What else can be learnt about autism this month? Diversity and acceptance. In multicultural Australia, we have already come a long way in respecting differing beliefs and cultural backgrounds since the “White Australia Policy” of more than a century ago and the “Assimilation Policy” of more than ½ a century ago. Why is it then that we have groups within society whom still fear disability? A top marketing priority for anti-vaccination groups is the (long debunked) myth of the MMR vaccine causing autism. With some parents fiercely believing that it is better for a child to be dead from measles than to live with autism, it is little wonder that actually autistic children and adults question their worth when confronted with such triggering content. We are each born autistic, and with self-acceptance and a support network, hardly any of us wishes to change anything. Awareness of autism is the beginning stepping stone towards understanding the fabric of facts and the kaleidoscope of personalities within the spectrum. History has been corrected. There are notable advocacy groups now to represent what autism is. We are now out and proud, and no longer locked away from society either voluntarily or involuntarily. With awareness then comes acceptance. To accept does not equal to having to agree. We disagree on political parties to vote for and which religion to base our lives on. As a society, we too can accept disability and difference without having to agree with all that it encompasses. I can accept that another individual disagrees with the amount of social support I require, but they too can accept without judgment that I require these support services. Goodbye Autism Awareness Month for another year and counting.

Place of No Name

In my mind’s eye, there is a place. I do not know if I have ever been there, or that it ever existed. It is as though I was there in a previous life, yet can no longer remember it with clarity. It is a simple sun room. A wooden chair and a table for one lean against the wall. A thin vase stands with a single tulip. There is sunlight, for I can feel the very warmth of it. There is a slanted window left ajar. Beyond it there is greenery, vines I think, because I can just make out the lattice hidden. The ambience is one of contentment. There is no time in this place. I am a still picture, or a vapour of a memory swirling, forever searching.

I imagine myself sitting at that lonesome table, notepad and pen at the ready, poised to compose a long endearing letter to a lost loved one. Perhaps if I can feel my way around this place, I might locate a kitchenette and thus make myself a warm cup of tea, one sugar and lots of milk. Then I can sit for hours on end, only if the teacup could refill itself, the pen could glide across the pages without effort, and a cool summer breeze could waft through that window. Then contentment would overflow. How I long for the silence of being alone, yet surrounded by the noises of domestic banality.

This place I would dream of again and again. I am neither in full consciousness nor in deep slumber. Who owns this place, its furniture and adornments, its pure simplicity and its meandering vines? Am I a time traveller, an unwelcome trespasser or a long-term guest? There is no other soul there to tell me, or to converse with me, so it shall be then, an unanswered mystery. Yet I feel connected to this place. I belong to it somehow. I would not have been brought here if my existence proved futile. However, I reach this very place, a contented place, only through dream.