May 9, 2016
by Kate Morell
‘I wish I were a psychologist,’ I think. ‘I wish I knew exactly what to say.’
Sometimes I shy away from writing, not knowing exactly what to say. Afraid my words may not be exactly what others want to read.
‘Your words were hard to read,’ I was once told. Also that they were encouraging and appreciated, praise I dismissed, not fully understanding the positive impact of my words. My words had been hard to read and it bothered me to think my words had caused distress so, just like that, I was silent.
I have since realised that everyone in the Usher family is different. Some, newly diagnosed, some have known for years. Some, parents, family, or friends of the diagnosed, some with no connection to Usher syndrome at all, just the desire to understand. And some, devoting their time in search of a cure.
For some, Usher syndrome is who they are, it is their world, it is their whole life, and for some, like me, Usher syndrome is such a minor part of who they are.
Everyone, at a different stage of grief and acceptance, and many, susceptible to depression and anxiety.
My wish to be a psychologist is so I can use my words carefully and thoughtfully. To not remain silent.
Words can be connection. Words can be powerful. Words can be healing.
‘But who am I?’ I think. ‘Who am I to offer my words?’
The Usher family is special to me.
Each time Mark sends an email listing new members in the Usher Family Network, I save them in a special folder. My special family. You see, I have never met anyone with Usher syndrome. Not one. But the names in that folder are my link to people with Usher syndrome all over the world. My connection to people just like me.
That folder makes me feel like I am not alone.
Before I was silent, I would email and introduce myself to new members. But then a reply came from the parent of a newly diagnosed child. Distraught, confused and lost. A cry out for help. What was this syndrome and what was going to happen? No information had been received, no support offered, and it left me not knowing exactly what to say. Afraid, again, my words may not be exactly what they wanted to hear.
‘I wish I were a psychologist,’ I thought. ‘I wish I knew exactly what to say.’
I offered reassurance, support and information, to the best of my ability, and said I was always there if needed. (Me? What could I do from the other side of the world?)
I felt useless. I felt out of my depth.
And from then onwards, I was silent.
Each time Mark now sends an email listing new members, I read their name and location, and promise myself that I will be in touch with them when I know what to say. I then save the email in my special folder, praying that I did not miss a cry for help.
My special folder is always on my mind. ‘How?’ I think, ‘How can I use my words carefully and thoughtfully? How do I know exactly what to say?’
I am no longer without words. It was my own words that broke my silence.
Reluctantly, I was reading my own words written years ago. My cry out for help. Words I had forgotten ever thinking.
Reading my own words was truly distressing.
To think I had lost my way. To think I had lost my will.
That I almost let Usher syndrome beat me. And, to not even remember?
Words truly are connection. Words truly are powerful. Words truly are healing.
As hard as those words were to write, even harder to read, I am relieved I did write them and tearfully grateful I read them again.
Those words were connection. Those words were powerful. Those words were healing.
And those words saved me. I vow never be silent again.
Being in Australia, I am awake when most of the world is asleep.
I saw a cry for help on social media. It was posted by a girl with Usher syndrome who I didn’t know. I didn’t even know how I came to be following this girl from the other side of the world on Twitter. But I am glad I did.
The cry for help was only online for a few seconds, posted then immediately deleted.
I didn’t know what to do. It was unlikely anyone else saw the cry for help, not at three o’clock in the morning. Not during those few seconds.
I really didn’t know what to do.
All I had was words.
Words are connection.
‘I have Usher syndrome too,’ I wrote.
Words are powerful.
‘I have been there before. Please. Write to me.’
Words are healing.
She did write to me. And I listened.
‘Who am I?’ I think. ‘Who am I to offer my words?’
No, I am not a psychologist. I am even better than that. I am me and I know exactly what to say, for me, about me, and on behalf of me. Just a girl who happens to have Usher syndrome.
I will never understand and know what it feels like to be you.
To be you and not have Usher syndrome. To be you and have Usher syndrome. To be you and have a child with Usher syndrome. And you would never understand and know what it feels like to be me.
But this is no reason to be silent.
We are all different.
But this I know.
No one has to feel alone.
Usher syndrome connects us all.
I may be asleep when you are awake. I may be awake when you are asleep. But please, if you feel alone, comment below and I will connect with you.
If you need someone, but not me, please, comment below and I will go through my special folder and find that someone for you.
Usher syndrome connects us all.
And we are all in this together.
Words are all I have.
Words are all I need.