July 5, 2016
by Kate Morell
Words I once wrote. Forgotten words.
I will always have courage.
I will believe in myself, always be true to myself.
I will keep smiling, always laugh at myself.
I will never stop dreaming, always have hope.
I will do what it takes to be the best I can be.
I will be an inspiration.
This I promise you.
Words I wrote here on this blog. Promises to myself. Promises to you. Forgotten promises.
It is time to be a voice.
It is time to be a mentor.
And, it is time to be known.
Words. Promises. All forgotten.
I have always felt there are two of me.
Yes. It is complicated.
There is Kate, ‘hello,’ who is, well, me.
And there is the other Kate, ‘hello, me again,’ who happens to have Usher syndrome. That Kate is hearing impaired, vision impaired, and going blind. She is the one who writes promises, wants to be the best she can be, to be courageous, and all of that.
Glad it’s her, not me. Oh no, hang on, it is me. See?
Once upon a time, there was just me.
The other me, the extraordinary one, only came out if she absolutely had no choice. Usually in the dark. You know, because of the night blindness.
I would happily be the ordinary me, but as the sun set, the change would begin. I would grow anxious, and, like Cinderella as the clock approached midnight, feel the need to run away before turning into the other me, the extraordinary one.
I wouldn’t always make it.
Fumbling in the dark, I would be forced to confess.
"Oh, so there is something you don’t know about me … you see … well, I have this thing … Usher syndrome."
Usher syndrome and I have coexisted all my adult life, with the ordinary me switching places from time to time with the extraordinary me, like two identical (but different) twins pretending to be only one.
The switch would only take place at medical appointments, or if caught out, in the dark.
The ordinary me does not like to reveal the extraordinary me, not in my real life, preferring to be seen just like everyone else.
But here, on this blog, I do reveal the extraordinary me.
All my words, they are real. The me who writes them is open and honest, though only to a certain degree, and also (I hope) funny. Please tell me my zany sense of humour shines through? There are more than enough depressing words on disability in the world.
I am mindful that Usher syndrome is not the same for any two people. And I am extremely conscious that Usher syndrome, for me, does not define who I am. It is something that I don’t consider to be such a big deal. For others, though, it may be their whole world.
I never take my achievements for granted. That said, I do like to keep them to myself. I hate to boast or brag. With a passion. Hate it. Hate it. Hate it. Did I say I hate it? Well, I do. Humility. Modesty. Deprecation: those are my kind of words.
I will be an inspiration.
This I promise you.
And there it was. That promise. My forgotten words.
And I realised, someone might need to know that Usher syndrome does not have to define who they are, or their daughter, or their son. Sister or brother. Usher syndrome did not stop me and it does not have to stop them.
I cannot for a moment imagine what a diagnosis feels like as a parent, but I have always remembered my mother being extremely grateful to have met an older hearing impaired girl, when I was little, long before it was known I would also be vision impaired. Meeting that girl gave my mother hope. If this older girl could have a happy life, then why couldn’t her daughter, me, she thought. It gave her hope.
And I said, when I was that little girl, when I was older, I would be that older girl for someone else. I would be their hope.
That was the promise I made when I wrote those words, a few years ago in ’Tears on my pillow’. But since then, I have not wanted to boast or brag, aware that my hearing impairment and my vision impairment may not be as severe as others.
I have been very vague about my achievements.
Now, to do this, I am going to cover both my ears and my eyes, to pretend I never wrote these words, and when that someone who might need to read these words has seen them, this post will self-destruct. Because, bragging? Hate it. Hate it. Hate it.
To that someone who might need these words, let me tell you about the extraordinary me:
Yes. I have Usher syndrome, but let me tell you something else about me.
I have been a checkout chick, a sales assistant, a barista, and a waitress.
And of course, before all of this, I finished school. My mother was told not to expect me to finish school. But, yes. I finished school, hell, I even finished university.
I have a Bachelor of Arts. I am a Graphic Designer who has worked in top design firms in Sydney, and in London.
Once I heard my boss take a call from Sir Paul McCartney, a client. Another day, the firm took us all to Paris for the day.
I worked as a receptionist in New York while there on holidays, filling in for the receptionist who was on holidays.
I have travelled extensively, and for quite a long time. I don’t count countries because, now, that is pushing the bragging too far.
I have walked down the Grand Canyon, I have tandem skydived.
I have met Elvis in Las Vegas, well, an Elvis impersonator at a convention but he looks like the real one in my photo.
I have another photo of me sitting on Santa’s knee. No. Not the fake one at the mall. Santa Claus. In Lapland.
I have been locked away for the night at the Slovakia/Hungarian border and lived to tell the tale.
I have driven, I have sailed, I have skied, I have played hockey, netball, softball and tennis. I was school swimming champion.
I have roller bladed, ridden bikes.
Oh, what else can I share?
I am married, and I have successfully kept two beautiful, compassionate, empathetic children alive for nearly ten years.
My mother, now she loves to boast as she was told not to expect me to amount to anything at all, so I am sure she would add a million things.
But that’ll do.
If you have Usher syndrome, and wonder what you will do? This should be enough to convince you that there is nothing you cannot do. Promise.
Now, please step back.
This post will self-destruct in three … two …one.