In a world often defined by limitations, Mary-Jane Clark, 67, stands as a testament to the power of resilience, determination, and unwavering hope.
Her journey through life, marked by the challenges of living with cystic fibrosis (CF), is not just a story of survival, but one of triumph against the odds.
From a childhood marked by loss and fear to a fulfilling career in social policy, Mary-Jane’s life is a beacon of inspiration for anyone facing adversity.
Born into a loving family in the 1950s, Mary-Jane was the youngest of six children, four of whom were born with CF. Tragically, she lost two brothers to the condition at a young age, a loss that would shape her childhood and instill in her a deep sense of fear of losing others she dearly loved. Despite the grief and challenges, Mary-Jane fondly recalls the warmth and support of her family, particularly her devoted parents who faced unimaginable heartache with unwavering love and resilience, and her very loving big sister and brother.
It wasn’t until the age of eight that Mary-Jane was diagnosed with cystic fibrosis. With the support of her loving family, she faced her treatment regimen head-on, embracing each day with courage and resilience, getting her treatment out of the way each morning, so that she could get on with her life.
Growing up with CF in a time when treatment options were limited, Mary-Jane faced numerous health challenges, including chronic and severe sinus infections requiring multiple surgeries, gastrointestinal issues resulting in crippling stomach cramps, and, of course, a chronic cough. Yet, despite the pain and discomfort, she was a happy, normal kid, enjoying the simple pleasures of childhood playing with friends and exploring the world around her.
School-Life
Throughout her primary school years, Mary-Jane faced both the kindness and cruelty of others. While some teachers and classmates showed understanding and compassion, others resorted to ridicule and mockery. But these experiences didn’t deter her, instead, Mary-Jane remained resilient, enjoying school and playing with her friends.
Meanwhile, Mary-Jane describes her high school years as “just like other teenagers, focusing on my studies, my friends and the usual teenage insecurities associated with early dating”. That was until her GP told her bluntly, in her final year of school, that she shouldn’t have children as she wouldn’t live past 30 years of age. Despite this devastating medical opinion, delivered coldly and without empathy, Mary-Jane was determined to go to university and have a fulfilling career.
Her journey into the realm of higher education marked a turning point in Mary-Jane’s life, igniting a passion for social justice and a commitment to making a difference in the world. Armed with an unyielding determination and a thirst for knowledge, she embarked on a career dedicated to serving the most vulnerable in society.
Work and Career
As she entered adulthood, Mary-Jane’s determination to defy the limitations of her illness became increasingly evident. From her early days as a research officer in Parliament House to her role as Executive Director of Child Protection and Early Intervention, Mary-Jane’s career was a testament to her unwavering dedication and tireless advocacy.
Despite the challenges posed by cystic fibrosis, Mary-Jane’s career was both challenging and immensely rewarding. She pursued a career in social policy, driven by a passion for advocating for the most vulnerable members of society. Her decades-long career saw her leading initiatives to improve services for people with disabilities, the homeless, victims of child abuse, the aged, and others in need.
Love and Relationships
Navigating relationships with CF presented its own set of challenges, yet Mary-Jane approached each hurdle with grace and honesty. Whether confiding in close friends or debating when and how to disclose her condition to employers, she refused to let CF define her or dictate the course of her life.
In her personal life, Mary-Jane found love and support in her husband, Martyn, whom she’s been married to for over four decades – Her marriage stands as a testament to the power of love and understanding and proof that true partnership transcends any obstacle. Together, they embarked on numerous adventures around the world, defying the limitations that CF sought to impose. With Martyn by her side, Mary-Jane found strength and resilience in the face of adversity, enjoying a rich and rewarding life.
In recent years, Mary-Jane’s life has been transformed by the revolutionary drug Trikafta, which has brought newfound vitality and freedom from the burdens of chronic illness. With her lungs clearer than ever, she has embraced life with renewed vigour, travelling the world with her husband and pursuing her passion for music with a newfound sense of joy and ease.
Reflecting on her journey, Mary-Jane offers words of wisdom and encouragement to others facing similar challenges: “Live your life to the full! CF is a rotten nuisance and a pain in the neck. But it’s NOT who you are! It’s just one of your greatest challenges in life. Who you are is defined by everything else about you and how you navigate a happy and fulfilling life, despite having CF.”
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
