My TEDxMandurah Talk
I’m so honoured to be able to share my talk from TEDxMandurah. This was a live event in March 2021. I’d spent months working on and attempting to memorise my speech. Normally, when I present, I don’t work from a memorised speech. My dyslexia makes memorising very difficult. In fact, there was five whole paragraphs of my script (below) that I completely forgot on the day and I was so disappointed because I felt those words added so much value to the talk. So, please, if you just watch the video, please also read the five paragraphs in bold below.
I hope this talk brings some light into your life. Remember, even in the darkest moments, we can look for the light.
My brother was one in a million. Literally. When he was fifteen-months old he was diagnosed with a very rare condition. It was a condition that meant his skin could not protect or heal itself from exposure to ultraviolet light, like the light from the sun. Every time he was exposed to sunlight, it was killing him.
The doctors told my family that he wouldn’t live to see his fifth birthday. If they had been right, I never would have met him.
I was born into a world where I always knew my brother was dying. I always knew the sun was very dangerous. And our family lived in a strange space where life involved tragedy and grief and yet every moment was also precious and full of hope.
When I was little I didn’t know that we weren’t normal. I knew my brother was different, but it never occurred to me to wonder why we rarely spent summer days down at the beach; Why “going outside to play” meant after dark, when the stars were out; or why our windows had curtains that always stayed closed. It was normal to hang out in hospitals, riding wheelchairs up and down the children’s ward. And laughing, and playing, and just being a kid while my brother was dying.
There were a lot of days in hospitals. Because even though we did so much to protect my brother from light, it’s everywhere. Every day at school he was exposed, not just to the sunlight through open windows, but directly overhead, from the fluorescent globes still used in schools today. Even in hospital, those overhead lights were killing him faster.
Every exposure lead to skin damage, which lead to skin cancer, which lead to malignant tumours and surgery and skin grafts. He’d have two wounds for every fix because they’d take healthy skin from less sun-exposed areas of his body to repair damage to his face or hands. In time even his eyesight was affected and he grew increasingly blind. In time he had less and less of his body. And in time, less and less of his mind.
Now I don’t tell you this story to garner sympathy or even to raise awareness for the condition that killed my brother. I tell you this because I want you to know that I’ve known tragedy. I’ve known living a life that doesn’t seem fair. I’ve known losing someone who was precious and whose life, short and full of hardship, mattered.
That’s what I’m really here to talk to you about today. About why all of this matters. Why, the bad stuff, the tragic stuff, the heartbreaking stuff that we face in our lives, matters. And more importantly, how, even when we’re living it, we can choose to trust that the experiences we have in every single moment, the good and the bad, are vital. How even in the darkest days, when we feel like the sun might never rise again, we can hope. And that hope for the sun keeps us alive.
You see, my brother didn’t live in darkness. Yes, we avoided exposing his skin to ultraviolet light but as we grew up we’d go out riding our bikes all over the neighbourhood. He’d be covered, head to toe, with gloves and even a helmet and visor that shielded his face from the light. Because life isn’t dark rooms alone. Life is out there, with others, to be lived fully. We hoped for the light.
But as my brother’s condition progressed, and as I got older, it became harder to keep laughing, and playing, and being a kid while he was dying.
So much of my life revolved around my brother and his needs that by the time I was going through my own mental health challenges in high school I felt invisible. My brother’s life mattered so much to everyone, that I started thinking my life didn’t matter at all.
I didn’t know it at the time but I was spiralling so deep into Bipolar Disorder that the highs and lows could be dangerous. Because I didn’t think my life mattered I stopped thinking forward to the future. I started skipping school. I started smoking and stealing and drinking. I started disconnecting from people. And the more I did all those things the less I felt my life mattered. I started believing the world would be better off without me.
In the darkest moment of that depression, I sat with my back wedged against my bedroom door. It was late afternoon but my curtains were drawn against the sun and my overhead light stayed off. I sat in the dark and held a large, sharp, carving knife in my hands. I sat there, contemplating the edge of that knife, and listening to my family in the next room.
It was one of those most ordinary, extraordinary moments. Outside of the bubble of this teenage girl about to kill herself the world kept turning. My brother was still dying. My family were still living their lives as they always had. My mother and sister were arguing with each other in the next room. I can’t remember what they were fighting about but I remember thinking my sister was being selfish because how can she make it all about her when our brother is dying.
As you’ve already guessed by my standing on the stage before you, I didn’t take my life that day. Because in that moment, as I cradled the knife in my hands, I started to get angry. The thing my mother and sister were arguing about seemed so insignificant that I could not fathom how that could possibly be more important to them than someone dying. How it could be more important than me, dying.
Because although they didn’t know it at the time, I was dying. In that moment I had been heartbeats away from taking my life. I was closer to my death than even my brother had been all his life up to that point.
Because I’d lived with the constant state of my brother dying my whole life, it hadn’t occurred to me that I was dying too. When I held that knife in my hands I had been so close to death, but even since then, every day, I am dying. Even when I’m not depressed and suicide is the last thing from my mind, I’m still dying. And so are you. Because we are, all of us, dying.
We might not be on the edge of a knife, in fact I hope most of us aren’t, because even though we are all dying, our lives matter. Each and every one of us. Your life is meaningful. You may never know the incredible impact of your life but I’m here to tell you today that even in the darkest moments, there is light.
In that darkest moment, I had to force myself to look for the light. I had to build within myself the ability to believe that things would get better. I had to learn to trust that no matter how hard life gets, no matter what life throws at me, I am meant for more. I had to choose to make my life matter to me.
Making that choice was the hardest thing, but it wasn’t a metaphorical light switch. It didn’t magically bring out the sun. Life didn’t instantly get better. Having made that choice I could begin to see light on a path through the darkness of my depression, but every day I’d wake up in shadows and have to choose again. Every day, living with Bipolar, I have to choose again.
But that’s what this is really all about. It’s about how, in every moment, how we handle what happens in our lives is a choice. When we are in our darkest moments, when we face tragedy, or grief, or heartbreak, or loss, or pain, we have the power to choose to make it meaningful in our lives. We have the power to choose how we face our challenges and how we rise above them.
I didn’t die that day, and nor did my brother. In fact, we would both go on to live years after. Every year his condition lead to more and more skin cancer that ravaged his body. Despite surgery and skin grafts and medicine we couldn’t outrun the battle.
My brother lived to be twenty-seven years of age. He survived twenty-two years longer than any of his doctors ever hoped for him when he was first diagnosed. He lived to make friends, to finish school, to get his driver’s license, to spread awareness about his ultra-rare condition, to meet his first niece, to change people’s lives.
The thing my brother’s life taught me was that it all matters. I am who I am because of him. If anything at all had been different, this would not be my life.
Now, I’m not saying my life is phenomenal. I’m not a millionaire, I don’t have a fancy house, or the newest car. No, if anything, some people would say my life is nothing. I’m divorced, a single mother of two special needs kids, living with chronic illness, writing books hardly anyone buys. But I love my life. I value my life.
You see, I’ve learned to see the blessings in everything. Even the bad stuff.
That is the hopefulness I want you to sit in right now.
Bad things happen. Sometimes they’re the little things like stubbing a toe or getting stuck at a red light when we’re already running late. Sometimes they’re the big things like riots, and terrorist attacks, and pandemics that take hundreds of thousands of lives. Sometimes they’re the precious things, like losing the people we love. But they matter.
It’s so easy to sit in our sadness, or heartache, or grief, or pain. Sometimes it’s easy to feel anger or frustration or hate. And all of those feelings are valid but they don’t really help us live our lives. They certainly don’t help us live happy lives full of light.
I believe we can change the way we look at life when things go wrong.
With the power of positive framing, we can ask in every moment; What comes after? How can my life be transformed by this? Why is this pain important? What is it teaching me?
When my brother died, I could have raged at the unfairness of it all, the unjustness of his life and the life I’d endured because of it. Instead, I sat in that moment feeling his loss and I could see the blessings. I could see how his life had been an extraordinary gift. And his loss, bittersweet, was also a gift. I could see the remarkable life I could go on to live after him, blessed because I’d known him. I understood how important it was to give the people I love my whole heart because every moment with them, the joy and the pain, is precious. I learned that our lives matter.
When my marriage failed, I could have sat in the bitterness and betrayal of an unfaithful husband. I could have resented him and all the handful of years we’d had together. Instead, I let myself see an opportunity for us both to find a greater happiness. The pain of that failure was important because it taught me never to settle for comfortable when I could dance outside of my comfort zone. I learned that I didn’t want a loveless marriage and I didn’t want a loveless marriage to be the example we set for our children.
When my son was diagnosed with autism, I could have wallowed in the unfairness of a child who, like my brother, would always be different. I could have been angry and frustrated about how much harder that meant everything would be in our lives. Instead, I let myself see how much my son’s life matters. How I could become his greatest teacher, supporter, and champion. I understood that it was important to let myself grieve for the idea of the perfect child I’d once had in my head because in that grief I’d see the real wonder, the miracle, of the child I had. And I could learn that he needed me to show him his remarkable strengths, just as raising him would help me see mine.
In our darkest moments, we must find the light. When we face hardship, or tragedy, or challenge, or loss, we must ask ourselves: What comes after? How can my life be transformed by this? Why is this pain important? What is it teaching me?
This mindset shift transforms your experience in a heartbeat.
But it requires a degree of faith.
Now when I say faith I’m not talking about religion. I’m talking about trusting that your life is meaningful. I’m talking about trusting that you are meant to become something even more than you are right now. I’m talking about having faith that your life matters.
The faith in this hopefulness gives us power. It gives us resilience. It gives us the opportunity to hold on to happiness when all we want to do is cry. It gives us the courage to stay, when all we want to do is run. It gives us the compassion to forgive when we’re desperately clinging to blame. It gives us the strength to survive.
And it’s not easy. Believe me. I’ve lived, from the day I was born, knowing life was not fair. Knowing the people I loved most were dying. Knowing light can be dangerous.
But we live in the light.
And sometimes finding it, means looking for it in the darkness.
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