May 3, 2017
by Kate Morell
When I was fifteen I was told, by the time I was forty, light would become dark. My day would become night. My deafness would become deaf-blindness. The ratio of four out of five would become three out of five of my senses working, just sixty percent.
And there is nothing I can do about it.
I know I am on borrowed time, almost as if I am traveling back in time from the setting sun, that was long ago meant to disappear over the horizon. As the earth rotates from the west towards the east, I am running the other way. Chasing daylight as night tries to catch me.
Sometimes it is tiring, trying to outrun the night. I trip. I stumble. Sometimes a black cloud hangs over me, blocking the light. Has the night finally come? I wonder. Not yet, I pray. Not yet.
My life is like a twenty-four hour cycle. I am now half way through. I have lived my daylight hours, and now, at forty-five, a few years later than predicted, the sun barely peeps up from the horizon, and soon it will be dark.
The most spectacular show of the day must be sunset. Vibrant and colourful. Golden sunbeams cast upwards into the sky, a blaze of painted pinks, reds, oranges and yellows. Blues and purples too. No two sunsets the same. To me. Or to you, who may be looking at the same as me.
That is what I am trying to do. This is the sunset of my life, when I try to squeeze in the most spectacular show of my life, vibrant and colourful, before day becomes night.
Sunset is a time for wonder. For curiosity. For awe. Sunset is a time to stop and admire beauty. To be thankful. To be grateful. Sunset is a time to share with those I love, and with things I love. Sunset is a time to rejoice in the miracle of sight.
It is not a time to be wasted. For when it is gone, it is gone.
My life will soon be dark, and I pray it is not a long dark winter night, but that dawn will come bright and early, with a chorus of birdsong, as if it is the summer solstice.
“Faith is the bird that feels the light when the dawn is still dark.” - Rabindranath Tagore
When I was fifteen and told light would become dark, I never believed that there would not be light again. Dawn will come, maybe in forty years, maybe in fifty, but dawn will come. I believed science would give me my miracle. My cure. My dawn. And I still believe.
Perhaps half my life will be day, and half my life will be night. Or maybe more light than dark. Night may never come. Might I not be completely in the dark, I pray for the soft dim glow of a candle. Or just a peephole, to look out at a guiding star. Perhaps colours will fade into grey, shapes become shadows. I don’t know.
But dream I will. Dawn will come again. And I will keep chasing the daylight.
Like a sunset, my project, Sunsets for Kate, has been vibrant and colourful. It has enabled me to witness the bond that extends with a smile, across cultures, borders, classes and religion. It has opened my eyes to both how big and how small the world can be, my ears to the common language of kindness, and my heart to the dreams shared by all across the globe.
“Your little project has grown wings!” a friend with Usher syndrome said.
I agree. I feel like it is soaring, like a bird, flying across the globe, introducing me to places I have never known, and people I have never met.
Why sunsets? Of course, before anything, when light becomes dark, day becomes night, I will most miss looking into the eyes of my loved ones, to see them looking at me. But I cannot do anything about that.
What else would I miss, I wondered. A simple thing. A sunset. And there is something I can do about it.If I go blind by fifty, and live to be ninety, I realised, I will miss 14,610 sunsets. Why not try and see a lifetime of sunsets in the lifetime of my sight. Usher syndrome may take control of my sight, but I can take back control and not let Usher syndrome rob me of my 14,610 sunsets. (Take that Usher syndrome!)
Sunsets for Kate has been received just as I had envisioned. In three months, it has been featured on two television news bulletins, an internet news bulletin, front page on three newspapers, on radio, in magazines, all over Facebook and Instagram, on blogs and even featured on seven television weather bulletins. And I have received close to 7,000 sunsets.
Sunsets for Kate has taught me, if you tell your story, if you share your dream, if you reach out for help, you might just be surprised who will reach back out to help and tell their story, and share their dream, to you.
And although there is nothing I can do about Usher syndrome taking from me my sight, I can take the fight Usher syndrome has instilled in me to raise awareness and shine a light on it. I can use my impeding blindness to open the eyes of others, one sunset at a time. And I do this for you, for me, for us, the Usher Family.