Joyce de Ruiter | Webinar Usher Syndrome

Audio Transcript Auto-generated

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  What if you have to choose between deaf or blind?

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  What would you choose?

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  Gosh, what kind of question is this?

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  These are things that can choose between as you all

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  know. I cannot choose either.

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  And not because I don't know what I find more

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  difficult not being able to see or not being able

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  to hear.

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  I cannot choose because I don't have a choice.

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  I'm going deaf and blind today when all light conditions

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  are optimal.

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  I am looking to a tunnel off not more than

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  20 degrees compared to looking to a small object such

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  as a toilet paper roll.

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  And I'm just constantly scanning my side, which is exhausting.

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  And the prognosis is that in 10 years from now

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  I will look to an object just a small as

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  a star.

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  And this process will continue until I can't see anything

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  anymore. Do you feel resistance or anxiety?

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  What a unknown.

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  Are you secretly assuming the role of victim and blaming

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  others? Or are you that pure bred optimist who says

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  I see every moment of change as a chance to

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  learn and to grow So in short, how h how

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  are you?

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  I prefer to call up on the couch, watching Netflix

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  and eating chocolate lots of chocolate.

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  And the funny thing is that it is scientifically proven

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  that that actually is the best thing you can do

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  at these moments.

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  All have to dio to deal with changes in life

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  and setbacks in our lives and dissatisfied customer losing your

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  job, something with your health, the loss of a relationship

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  or a friendship that you had to say goodbye to.

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  And I'm sure that many of you have a story

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  we can write a book about.

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  And you didn't always chose that story.

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  I didn't choose for my struggles with Russia syndrome, but

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  I did choose how to deal with him.

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  Please let me take you back to the year that

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  followed after my diagnosis, because that was also the year

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  that I had to decide what I wanted to do

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  with my future.

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  I had to decide what kind of degree I wanted

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  to pursue.

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  Who graduation coming soon, I went thio all kinds of

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  universities for information about all types of studies.

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  Um, economics, law journalism, fish therapy.

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  Uh, I went everywhere, but I didn't feel it until

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  I went to that university that make my heart beat

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  faster. I listened to the Dean speech and my parents

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  told me that I switched on again, that I had

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  those Parco in my eyes again.

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  I have finally made my choice.

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  And then I have to go back to the eye

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  doctor for a regular check up.

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  And I sat there in his very uncool Z room

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  with all kinds of equipment around me.

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  For I am measurements and posters on the wall of

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  the human eye.

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  And I sat there in this big black Let our

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  patience chair, and I told my eye doctor that after

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  the summer I would start D education off my dream

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  visual marketing and I have met ah, lot off competent

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  and empathetic doctors.

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  But unfortunately, this wasn't always the case.

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  Um, that time my doctor Waas, a man was getting

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  a little bit older, had his white hair separated at

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  the site and wore a small golden rimmed glasses and

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  a white doctor's coat, which he had buttoned up to

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  the top.

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  And he moved his chair towards me and he looked

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  me deeply in the eye and he said, Visual marketing,

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  you just the name ridiculous.

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  You will become blind.

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  If you really feel you need to do something.

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  Go learn a language.

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  Maybe then you can translate a book or something.

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  But that's all you will be able to contribute to

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  this society.

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  Ban. He smashed all my hopes and my dreams for

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  my future am So success involves learning and growing.

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  Who do you think is more edge out?

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  You probably all recognize them because we all have these

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  voices in our heads and the devil and the angel,

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  the demonic voice and the angel voice.

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  Which one do you choose to follow in case of

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  a change, remember that you always have a choice in

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  how you deal with changes in life.