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.
Usher syndrome means I was born with hearing loss, and will gradually experience vision loss until I become blind.
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.
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.
Life is never too busy to pause and look around to appreciate the beauty in all that we can see.
It is not a time to be wasted. For when it is gone, it is gone.
There will be light again. Dawn will come.
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 peep hole, 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.
‘Faith is the bird that feels the light when the dawn is still dark.’
Rabindranath Tagore
Like a sunset, this passion 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 just like me 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. It has been featured on two tv news bulletins, an internet news bulletin, front page on three newspapers, on radio, in magazines, six tv weather bulletins, all over Facebook and Instagram, and on blogs.
Time, I thought, for me to write my launch post, which is this. I had planned a quiet day to write it many times over, but out of the blue, something would happen and this little project would spread it’s wings and soar a little higher, fly a little further and I just set it free and watched in pride and awe as it formed connections, not only for me, but for others from all over the world. Without me doing anything much at all, for many, sunsets became a daily reminder not to take sight (or anything else) for granted.
And so, my little passion project is now officially, if not belatedly, launched.
To everyone who has tagged a sunset, thank you. To everyone who has written a poem, shared a story, painted a picture, offered a prayer, written a song (or two – thank you beautiful husband), messaged kind words, gifted amazing experiences, read my posts or simply watched a sunset for me. Thank you.
I know, I trust, that after the sun sets, dawn will come. It will take a miracle, but the sun will rise again.
And if it doesn’t, because of you, I know I will have made the most of the sunset in my life.
Will you please tag a sunset for me?
On Facebook share to @sunsetsforkate (otherwise I will not find it). On Twitter and Instagram share with #sunsetsforkate and I will find it.
With love and gratitude.