As a young hearing impaired girl, I had a dream to be a voice and inspiration for kids just like me. I didn’t then know I would be vision impaired and going blind.
Diagnosed with Usher syndrome when I was fifteen years old, I was told to expect to be blind by forty. It is the most common genetic cause of combined deafness and blindness with more than 400,000 people affected worldwide, and there is currently no cure.
Believing I had little time to chase many dreams, I was resilient, determined, sometimes stubborn and fiercely independent as I wouldn’t let others deter me from what I knew I could do. When I was told I couldn’t, I showed I could.
I was motivated by exceeding expectations and smashing preconceptions. I could pass for abled when I was disabled, and was seen to be ordinary when really, I was extraordinary. All rather wonderful, except nobody told me hiding my two invisible disabilities would make me feel invisible. I was lonely and alone, and never found a place to belong.
In my late twenties, I became so depressed I boarded a plane back to Europe from where I had just returned after two and a half years working and travelling. I was running away again – running from who I was and running from who I was to become. Without realising it at the time, as I wandered across Eastern Europe and the Balkans, I embraced mindfulness. As I was running from my past and future, I was present in the present. I embraced daily journaling, writing for hours every day about anything in the present, but nothing about myself, my past or my future. I was persona non grata to myself!
Days became weeks, weeks became months, months became one year. Writing became my therapy. It became my companion. It became my friend. Through it I found myself and found my voice and as it seemed, I lost my depression. I was ready to go home.
But this is not the happy ending. (Sorry.) I would be running away again (and again and again and again) over the next few years. Although alone, I never felt lonely when I travelled. It allowed me to witness the bond that exists with a smile across cultures, borders, classes and religion. It 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.
Eight years ago, still hiding my true self, I became both depressed and suicidal. Not good. Rather than being present in the present, I had an emotional breakdown over that future birthday … yes, forty … when I was told to expect to be blind. Now with a husband and two kids, running away was not an option. I woke up on my birthday to see I could see. Blind by forty? No. So, yay, happy birthday to me! Still not the happy ending though, but maybe the new beginning. At rock bottom, the only way is up.
Remembering the dream of my younger self saved me.
I realised I was not going to be a voice for kids like me if I kept my story to myself. I started a blog and shared my words with the international Usher syndrome community. Writing again became my therapy, my companion and my friend.
I made a promise to myself, to my younger self, and to all kids like me, that I will always have courage, I will believe in myself, always be true to myself. That I will keep smiling and always laugh at myself. That I will never stop dreaming and I’ll always have hope. That I will do what it takes to be the best I can be. That I will be an inspiration. And I made a vow, never again to be living tomorrow before today. I will be present. Today.
I shared my fears, my hopes and my dreams, allowing myself to be vulnerable, to be seen and to be heard, as my true self as if my life depended on it, because it did. And I came out to the world with my two invisible disabilities.
Usher syndrome is … I don’t know what to say … it is not a good thing, but do you know what is rather wonderful? The less I see and the less I hear, the more I see and the more I hear. I know! Usher syndrome has given me that and I think that is a gift.
Once I came out to the world, through my project ‘Sunsets for Kate’, I shared my dream to see a lifetime of sunsets in the lifetime of my sight. Although there is nothing I can do about Usher syndrome, I can take back from it something it would take from me. A lifetime of sunsets. And I can take the fight it has instilled in me to raise awareness and use my impending blindness to open the eyes of others, one sunset at a time.
A friend with Usher syndrome said my little project has grown wings. All I did was share my dream, and now it’s soaring, like a bird, flying across the globe, introducing me to places I have never known, and friends I have never met. It has taught me that if you own 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 share their story and dream with you.
Forty has come and gone, and still I can see. Take that Usher syndrome. A year ago, I again shared a dream and reached out for help and it was Kristina Karlsson who surprised me, reaching back out to help and I was incredibly lucky and grateful she shared her story and dream, and her book ’Your Dream Life Starts Here’ and the accompanying ‘Dream Life Journal’ with me.
Reading these instil in me the importance of continuing to share my dreams and vulnerability and remind me of the magic that happens when I do. As Dr Tererai Trent would say, it is possible.
I still think of running away. My dream is to write a memoir, share my story, set it free to soar across the globe. And then I follow, with my husband and two kids, running away together, visiting places I have never known, and friends I have never met. Watching sunsets together. Oh, and meanwhile, there is a cure, for me, and for all kids with Usher syndrome. That is my happy ending.
– Kate Morell
Founder
Sunsets for Kate
Photo of Kate by Jack of Hearts Studio.