Diagnosis: Undefeated

The mental impact of a cancer diagnosis is often overshadowed by the medical reality. However, the immediate and long-term realisation of one’s own mortality cannot be underestimated. Diagnosed at 56 with bowel cancer, Robyn Conquest faces a lifetime of worry.

After being diagnosed with a twenty centimetre cancerous tumour in her bowel in late 2014, enduring six months of chemotherapy and consequently beating it, there is still a twenty percent chance it will return. The audio slideshow reflects her journey, commencing with what she described as utter frustration; numerous medical personnel telling her she had anxiety, or just needed to slow down. Yet her persistence saved her. Her; my mother.

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JRNL102 – What’s Hidden Behind The Eyes?

A genetic condition characterised by excessive and involuntary day-time sleep, is what fourteen year old Courtney has experienced since birth. Narcolepsy is a chronic sleep disorder where the brain is unable to correctly regulate the sleep-wake cycles, rendering sufferers to a state of sleep hidden behind open eyes. It usually presents itself after reaching puberty, however in rare cases it can be pre-pubescent, and this is what occurred with Courtney.

‘Snore Australia’ is the largest organisation analyzing sleep disorders, claiming that narcolepsy affects three million people worldwide. The primary symptoms for narcolepsy sufferers are extreme daytime sleepiness, hallucinations and microsleeps. Micro-sleeps are brief, involuntary episodes of sleep that can last for 2 – 30 seconds at a time, where a patient can look awake, when they are actually asleep. For Courtney, these microsleeps, disguised by a blank stare, occur four times every hour she is awake, and range from 4 – 20 seconds each time. Her sound, sight and touch senses close off, despite her eyes being open, leaving no outward indication of this occurring.

According to her mother, Jennifer, unusual things began to occur shortly after birth, stating, “she wasn’t tracking things with her eyes.” This unusual behaviour left specialists concerned that she may be blind. As the years progressed, Courtney’s pre-school teachers also brought attention to the fact she was not following instructions like the other children were, leaving them to suggest that Courtney may have a hearing impairment. Courtney was continually assessed by various specialists, none of whom could find the hidden reason for the variety of unusual symptoms that presented themselves on a regular basis. Finally after a number of years, and much investigation, Courtney was diagnosed with narcolepsy at the age of eight.

Bubbly, vivacious and quirky are words to describe the now teenage Courtney, yet behind her extroverted personality lies this condition that is increasingly impacting upon her ability to perform at the expected level for her intelligence at school, as she would often miss instructions due to her hidden sleep patterns. Recommended medication to counter this issue, presented a further problem of stunted growth. Consequently, this medication is monitored to maximise Courtney’s mental, as well as physical health.

A key issue faced by Courtney and her family at present, is what will occur when she reaches puberty. It is a hidden quantity as the impact of her symptoms can lessen or increase. Should her symptoms progress, as is being indicated, narcolepsy will affect Courtney’s job prospects in the future, her ability to drive a vehicle and her capability of performing general everyday activities.

Courtney’s life choices will ultimately become limited, but with greater public awareness of this condition, sufferers may not remain hidden behind a vacant stare.

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Ripple Effect

Fresh air combined with the serenity of the ocean is a common scene for my Dad, who has grown up surrounded by the ocean from a young age. Surfing, swimming and surf living saving are interests he regularly takes part in, leaving the water as the perfect place to utilise.

The following sound piece tries to evoke two separate stories within one. The first with the subject’s narration, and the second with ambient sounds evoking the my Dad’s journey to, during, and from the place. Working odd and sometimes long hours, my Dad finds peace with the water and often uses it as an escape from the chaos that can arise from ordinary life. Alongside his certainty that ‘me time’ and work/life balance is well needed, it is becoming a common occurrence in today’s news that looking after one’s health and wellbeing is increasing at a rapid pace.

Reference: Song: Lynyrd Skynyrd – Sweet Home Alabama

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A quote to live by,

“This is your life. Do what you love and do it often. If you don’t like something, change it. If you don’t like your job, quit. If you don’t have enough time, stop watching TV. If you are looking for the love of your life, stop; they will be waiting for you when you start doing things you love. Stop over analysing. All emotions are beautiful. Life is simple. When you eat, appreciate every last bite. Open your mind, arms and heart to new things and people, we are united in our differences. Ask the next person you see what their passion is, and share your inspiring dream with them. Travel often; getting lost will help you find yourself. Some opportunities only come once; seize them. Life is about the people you meet, and the things you create with them so go out and start creating. Live your dream and share your passion. Life is short.”