See Me, As Me.
July 25, 2013
by Kate Morell
'Who am I?'
Hard to say. I wish it were a simple question. I wish I could say.
I am Kate.
That much I know.
I started off as a Kathryn, then I was Kathy, Katie followed before, at sixteen, I declared 'I will now be known as Kate'.
I am Kate. I have spent most of my life being Kate.
'But, who am I?'
I am a big sister.
I am also a little sister.
I am in the middle, the sister in the middle. I have two brothers.
I am a wife. I am a mother. I am a daughter.
That, too, I know.
Sometimes I don't feel like I am ‘me’.
'Who are you?' I think, thinking of me.
Who is the girl, hell, who is this woman? Are you really forty-one?
Are you really hearing impaired?
What's that you say, visually impaired too?
I'm sorry. What did you say? You are going blind?
You have Usher Syndrome?
Boy. Glad it is you not me!
Oh no, hang on. You are me.
My dream has been to be an inspiration. A voice. A mentor.
When I wrote ‘Tears on my pillow,’ I wondered ‘what can I do for her, the fourteen year old girl on the other side of the world, for me, my fourteen year old self, for all Usher Syndrome girls. What can I do?’
And now, I do have an opportunity to fulfill that dream, to be an inspiration, to be a voice, to contribute to the Usher Coalition blog.
And I have struggled.
I don’t think so.
I have written for my personal blog for two years, and have never struggled to write a post. But those posts, they were for me, about me, as me, as I am.
But to write about Usher Syndrome? And me?
To be a voice, to be an inspiration, to be a mentor, for the fourteen year old girl on the other side of the world, for me, my fourteen year old self, for all Usher Syndrome girls?
I have struggled.
It is not that.
What I have struggled with is quite simple.
This blog is about Usher Syndrome, and only about Usher Syndrome.
Yet, for me, Usher Syndrome is such a minor part of who I am.
And, I have struggled to write, for weeks and weeks.
But here I am… finally.
Yes. I can write for the Usher Coalition blog. I certainly can.
But first I need to write this post. I need to write this for my fourteen year old self.
I think this is what she would want to say.
I imagine this is what other fourteen year olds with Usher Syndrome would want to say.
Something doesn’t work properly in my ears.
Something doesn’t work properly in my eyes.
Usher Syndrome is such a minor part of who I am.
But Usher Syndrome is not who I am.
I am ‘me’.
I am not special.
I am not brave.
I am not courageous.
Well, I am, but not because I have Usher Syndrome!
I am, because I am ‘me’.
I am funny, no?
Oh God, I can ‘do’ funny.
I trip, I stumble, I fall.
All the time.
Yes, I can be funny. And, I am funny.
I get up, and keep on going.
I am determined.
And I can laugh.
Laugh at myself.
Oh God, if I didn't laugh, I just might be crying, all the time!
Yes. I can laugh.
I do not want to be treated as special.
I do not want to be treated differently.
I don’t feel special, though I am treated as special.
I don’t feel different, though I am treated differently.
Really, I am just like everyone else.
It is just that something doesn’t quite work properly in my ears.
And something doesn’t quite work properly in my eyes.
But is it me?
My fourteen year old self felt special, felt different, because she was treated as special, treated differently.
But was I really?
Or is that what I perceived?
Did I see myself as special? Did I see myself as different?
Did that come from internally? Or externally?
I don't know.
It has been a constant battle in my head.
How I felt, internally. And how I felt, externally.
Internally, I am just 'me'. That is my normal. And normal for me is not hearing well and not seeing well.
Externally, I am just 'me', but not hearing well and not seeing well makes me not normal. (I am not even allowing myself to write that word 'abnormal' in reference to myself.) Uncommon, I guess.
But that is not 'me'?
Oh, yes it is 'me'.
A constant battle in my head.
(Don't despair. I don't understand what the hell I am trying to say either!)
But this I know.
My fourteen year old self would just like to say one thing.
See me, as me.
That is all.
See me, as me.
Forget Usher Syndrome.
Forget the symptoms. The diagnosis. The prognosis. The treatments. The lack of treatments.
The medical jargon.
The outlook. The future. All that.
Forget my ears. Forget my eyes.
For just one moment.
Just see me, as me.