Here we are, the 1st of May of 2020, almost halfway through the year, and what a year it has been already. Being announced the 2020 Australian of the Year, South Australian Local Hero is quite a title to get your tongue around, but it is through this award, I have been truly able to reflect on what it is I can give to others. As an empowerment speaker I am passionate in ensuring that I can make a positive impact to our community, through sharing my own life lessons. Resilience is key right now for so many of us. We need to be strong and know we will get through these tough times. Resilience is my middle name. Cystic Fibrosis is where my journey has begun. Being diagnosed at birth and being given up for adoption seems to be the ‘go to’ when telling my story. As my story began from when I was only days old. For those of you who don’t know, I was given up for adoption due to my illness, Cystic Fibrosis. My biological parents where only knew to Australia from Greece and where told I wouldn’t survive my childhood due to my illness. With very little English and even less knowledge of my disease, they made the heartbreaking decision, to give me up for adoption and let me be with a family who knew how to look after me. My parents, I often speak of, the two most inspirational people you will ever meet. My Dad is a paraplegic, he has 1 leg and 1 hip, this is due to the White policy and discrimination he faced as a young boy. Over the years Dad’s health has not always been kind to him, he has no kidneys and has been on dialysis for as long as I can remember. Being a black man, in a wheelchair, you can only imagine what challenges my Dad has faced. But having a very visible disability, this has never stopped him from being a successful man. In 1988, Dad represented Australia in the Seoul Paralympics, competing in weightlifting. He has gone on to do many things most would say are not achievable. Despite his wheels, my Dad has always been a hands-on Dad providing endless love and support. It is through seeing how my Dad has lived his life, despite the hurdles he continues to face, that I am constantly inspired and motivated to live my life to the fullest and to never take no for an option.
My Mum, she is a woman like no other. She tells me the story of how she met my Dad and only 3 days after meeting, he proposed to her. Mum says, she never saw my Dad as a disabled man, she saw his smile and was charmed by his charismatic ways. It was love at first sight. To adopt a baby, with a life-threatening illness sounds absurd, Mum tells me how they wanted to adopt baby with a disability to give them a normal life. (After all what is normal?) After completing a Special Needs adoption course, they came across me, with Cystic Fibrosis. My Mum says they never adopted a baby with Cystic Fibrosis, they adopted Emmah. Being adopted by my parents who have the strong mindset that I was never seen as a child with an illness, I was seen as a person, was one of the greatest foundations I could start life with. Never judge a book by its cover and don’t ever underestimate anyone. Over the years, I spent many weeks and months hospitalised due to Cystic Fibrosis chest infections, this became more of an interruption to our lives. My younger brother and sister, also two people who had life as well. We are a very close family and it is through the challenges that my illness and my Dad’s disability that have made us a strong family.
I come from a very diverse family, we are all different colours and embrace the differences about each other. For this I too am very grateful. It has taught me that whilst I may not agree with others, what I can do is appreciate and accept a difference of opinions and hear what others are saying. It is through our differences that we are unique and special. This is a lesson learnt from my parents also.
I wanted to share this with you all, because I think with the current circumstances it has made me think just how important my beginning of life was. Having CF has meant my whole life, isolation is key – when it is flu season, I have had to stay indoors and away from others who are sick as a simple cold can turn deadly. I have lost to many friends with Cystic Fibrosis over the years due to lung failure. This comes from constant infections that eventually cause the lungs to no longer work. I have seen friends’ bodies deteriorate and watch as the life in them slowly turns off. This is just heartbreaking for me, but a reality. I have had many weeks of intravenous antibiotics over the years to help fight infections that are causing my lungs to deteriorate, this scares me to admit because once the lungs are damaged, the only answer for a CF person is to have a lung transplant. May is the national awareness month for Cystic Fibrosis. I think this is very fitting given the COVID-19 circumstances. As a global advocate for the entire Cystic Fibrosis community, through my social page CF Mummy, I encourage you to follow my Facebook or Instagram (or both) as each day, I am going to take you on an intimate journey with Cystic Fibrosis. I hope this will educate and inspire you! COVID-19 – You are a reality now for so many. With us all having to isolate, it is like the world can finally appreciate what someone with CF is like. The germs, the bacterial infections and just how many bugs are easily caught from a stranger is exactly that, very easy to catch. Whilst we can all feel sorry for ourselves, be worried about what this looks like and of course have fear over the unknown, I want to encourage you to take a breath. Make a list of the things that are worrying you, a list of those things that are consuming your thoughts and evaluate that. Work out what is in your control and what isn’t. I then encourage you eliminate those worries that are beyond your control. We can’t not make changes to those things that are out of our control. What we can do, is look at what we do have control over and work out how to remain positive. It is honestly the small things, take the time to enjoy a bit longer in bed in the mornings, enjoy the time at home with loved ones – enjoy the space from those who drive you mad. Evaluate what makes you happy as a person and use this time to climate the negativity. Do not let the fear of the unknown control your thoughts. We need to be fearless at a time like this. Take the correct measures that suit your situation best. We are all going through a similar situation, yet each person is affected differently both mentally and physically. Be kind to one another. Reach out to those who you may not normally reach out too. Personally, I have spent many weeks hospitalised having time to myself. With many “finding themselves” right now, I think for me, this is an opportunity to stop, reflect and refocus. I don’t want the world to go back to normal, I think for better things to come, we need change. And in my experience, when you hit rock-bottom, you have 2 choices, either get up or stay down. So I ask you this, what are you going to do when this is over? Stay down? Or get up? I know what I am going to be doing….