Tears on My Pillow

May 29, 2013

by Kate Morell

 

And then the tears came.

I cried. And I cried 

Cried for me. 

Cried for me, my fourteen year old self. 

Cried for another fourteen year old, just like me, my fourteen year old self. 

Tears on my pillow, I closed my eyes. 

I cried and cried, and suddenly, I was fourteen years old again. I was, I imagined, in my bedroom, the one I had all those years ago.

It felt so real.

Tears on my pillow, and I was transported back nearly thirty years.

I was aware that there was a son, and a daughter, mine, sleeping in the very next room.

Still. It felt so real.

I was aware that there was a kiss. A goodnight kiss, from a husband, mine, yet still, I felt I was my fourteen years old self. 

I knew I should open my eyes and tell my husband that, yes, even with tears on my pillow, flowing down my cheeks, that yes, I was okay. But I just didn’t want to open my eyes. I just didn’t want to leave this feeling. I was my fourteen year old self again. And I wanted to feel what she was feeling. 

To remember.

Fourteen. Blissfully unaware of what was to come only one year later. 

The knowledge.

 The darkness.

 Finding out that, as well as being hearing impaired, I would be visually impaired too.

 Deaf, and going blind.

 It felt so real. 

And I cried and I cried.

I cried for what was to come. I cried for what she, my fourteen year old self, would have to become. I cried for the other fourteen year old, the one I didn’t even know, the one that is on the other side of the world, the one I came across while looking for where I belong. I cried for what was to come, for her. I cried for what she would have to become. I cried for all girls like me, like her, wherever they are in the world.

I cried for us.:

“If you are always trying to be normal, you will never know how amazing you can be.” Maya Angelou

Where do I belong?

Where do I fit in?

I cannot relate to being normal, for that, I am not.

I cannot relate to being hearing impaired. That I am, yet, I am not just simply hearing impaired.

I cannot relate to being visually impaired. That I am, yes, yet, I am not just simply visually impaired.

Where do I fit in? 

I went looking. 

And found myself fourteen, all over again.

Tears on my pillow.:: 

“Never bend your head. Hold it high. Look the world straight in the eye.” Helen Keller

Picking up my daughter from school, a relief teacher watched as Angelina ran and hugged me. I watched the teacher as she then pointed at Angelina, pointed at me, looked surprised, then quickly, realising I was watching her, smiled and waved.

‘What was that about?’ I wondered, as I smiled and waved in return. 

That evening, Angelina told me they had been talking about the five senses in class. “I put my hand up in class”, she said, ”and told everyone ‘my mother takes her hearing aides out when she has a shower and she can lip read!’ 

She seemed so proud. 

“Mummy?” she added, “the teacher asked me if you were blind as a baby and I said I didn’t know.”

“Oh, did you tell them about my eyes too?”

Then I realised. 

The relief teacher.

 

She had heard all about this mother, who was hearing impaired, who was visually impaired… and then she saw me. She has seen me many times before. Just a normal mother, and was surprised it was me Angelina was referring too. 

I certainly didn’t look hearing impaired, and visually impaired too. 

How normal I looked. 

Maybe it is time for me to be the ‘show and tell’ of the day.

“It takes courage to grow up and become who you really are.” E.E. Cummings 

One thing I have not told anyone is that I am an Usher girl. No, not that Usher… cannot stand him! I am an Usher girl as I have Usher Syndrome.

I have never really identified myself as having Usher Syndrome simply because, being adopted with no family medical history, it is not possible to prove whether or not I really do have the syndrome, though, it is most likely, I do. 

I have a nickname for myself. It is supposed to be a joke. ‘Miss one in a million.’ If there is a one in a million possibility of something occurring, it most probably will. That’s me. ‘Miss one in a million.’

It is, however, no joke that it does often tend to be so true! 

So, there I was trying to find where I belong. Hearing impaired community, not really. Visually impaired community, no, not that much in common with them, yet.

So where do I belong? 

‘Well, I am an Usher girl.’ I thought. ‘Proven or not, I am an Usher girl’. 

The Usher Syndrome community? That is where I belong. 

And so I went looking.

“I wish I could show you, when you are lonely or in darkness, the astonishing light of your own being.” Hafiz of Shiraz 

Why, oh, why am I not surprised at how rare Usher Syndrome is? Me? ‘Miss one in a million’? Of course it would have to be rare. 

I knew the syndrome required both parents to carry the recessive gene. Tick. That happened to me. I knew there was a twenty five percent chance that it would be passed on. Tick. That happened to me. I couldn’t find any figures for Australia (where I live), but, how about this? There are over three hundred and thirteen million people in the United States… three hundred and thirteen million! Guess how many are estimated to have Usher Syndrome?

 

Go on. Can you guess? 

Between thirty and fifty thousand. 

The population of Australia is only twenty three million. 

Does that really mean I am perhaps just one of a few thousand? 

Like I said, ‘Miss one in a million’.

:

‘What can I do for her?’ I wondered, for her, the fourteen year old girl on the other side of the world, for me, my fourteen year old self, for all the girls, all Usher girls. ‘What can I do?’

 

And I realised. 

It is time to be a voice. It is time to be an inspiration. It is time to be a mentor. It is time to be known. 

It is time to stop trying to be normal and it is time to just be me. 

“To be beautiful means to be yourself. You don’t need to be accepted by others. You need to accept yourself.” Thich Nhat Hanh 

Tears on my pillow.

I cried and cried.

My typical coping mechanism when I was fourteen years old. Keep it all inside, then, when it all is too much, let the tears flow. Alone, of course, in my bed. And if that is not enough, I would write. Grab a notebook, and just write and write, tears on my notebook. One, two, three o’clock in the morning, if need be. If the tears didn’t take away all the hurt, perhaps writing would.

Then, the very next morning, I would pick up all my writing, never, ever reread them, and throw them away, ready to take on the world again for another month or so.

Tears on my pillow.

 It is such a relief to see, these days, the psychological issues that people with Usher Syndrome face, the depression, the anxiety, is now recognised as the most debilitating aspect of living with the syndrome. It is such a relief to see that it is recognised that these people need help.

 Tears on my pillow, for over thirty years. 

No one once asked me how I was coping. Told at fifteen years old 'you will be blind by forty, come back in ten years and we will see how it is going.'

 No one once asked me how I was coping. 

Tears on my pillow, for over thirty years.

 It has taken me that long to come to terms with the syndrome. It has taken over forty years for me to accept myself. What she, my fourteen years old self, did not have was someone to turn to, someone who understood, who knew, someone to lead the way before me.

‘What can I do for her?’ I wondered, for her, the fourteen years old girl on the other side of the world, for me, my fourteen year old self, for all the girls, all Usher girls. ‘What can I do?’

I know what I can do.

Not so long ago, I wrote myself a Personal Mission Statement, a promise to myself, and to my family, that I will try and be the best I can be. I will not let my hearing impairment dictate my life. I will not let my vision impairment dictate my life. I will not let depression back into my life. 

Today I share this promise with all the girls, all Usher girls, wherever they are in the world.

 This is my promise. 

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.

 And girls (and of course, boys), I have found you now, now you have found me. There are many things I want to share with my fourteen year old self. I will share them with you too. 

 Until then, 'look for the rainbow in every storm' (I may have just stolen that quote from the Spice Girls!). And remember, never stop dreaming, always have hope.

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