What do I do now?


Translated from Italian by Elisabetta Vianello.

Here is another one story. They all look the same and are all different. Because behind every story there is a unique person. Behind this story there is Sara, who, like many of us, asked herself and wonders: what am I going to do now?
But her final answer makes you scream, like King Kong did.

Sometimes our life is strange: it seems that it wants to make fun of you in order to laugh atyou.
I want to tell you my story but let’s start from the beginning.
My childhood was quite normal.
I was born in 1992, my family was a normal one eventhough my parents had low vision. My mother lost sight because of glaucoma, my father was affected by nystagmus and strong myopia.
We led a life that I have always considered as normal.
A lot of people have always asked me:
“How can you travel and go around if you don’t see well?”
My reply was
“We travel in the same way all people do: by bus,by train, with our aunt, with our friends.”
Then my sister and my brother were born.
My brother was affected by retina distrophia.
Nobody could explain the reason of this disease as it was not related our parents’ eye diseases.
For my family this condition was a normal one.

And then there is me. As far as I am concerned, my eyes were examined by the best specialists in Bologna.
They were the same who treated my parents.
The diagnosis was that my eyes were lazy as I saw 6 tenths per eye instead of 10 and that depended on my father’s nystagmus
However my eye problem was not serious.
I kept seeing less than other people but I didn’t worry about it even though I feared not to be able to do normal things,as for example the car license.
I wore glasses as I was short-sighted and astigmatic.
When I was twenty my eyes were treated by laser : so I could take off those glasses that I hated.
Then I attended the university, I graduated and I started working.
Meanwhile I realized that something was happening in my vision.
At the center of my visual field there were some little stains that grew and became just one stain and therefore I started seeing less and less.
I asked myself: what is happening? What’s the matter?
I went to the ophthalmologist, I underwent medical exams, I did cortisone injections and the diagnosis was
retinal thinning caused by stress.

I wasn’t convinced of this diagnosis, even though it was coming from the doctor and I went on living my life in a normal way ,without worrying about my vision
I have been living like that for five years but some months ago something else happened.
One morning I woke up and I saw two stains at the centre of the visual field in the other eye.
I asked myself:

what am I going to do now?

I felt like the world was collapsing on me.
How can I go on with my job and my hobbies?
I work at the computer as interface designer. I like travelling.
I felt so poor that I wanted to give up everything.
However, I couldn’t go on living like that and I had to do something in order to react.
I looked for the best Italian ophthalmologist and I went to see him with my fahter
He said us that our disease was called: dystrophy of the cones.
This diagnosis was given me after 28 years and to my father after 52 years.
It was quite incredible.

Even the ophthalmologist was astonished that no one of his colleagues had ever told us nothing about this disease as it was quite serious.
Now I have lost my normality and I feel different even though I have been feeling normal since my childhood.
I feel different but special too.
I feel special as I have met Donato and Dario, who are special people and their association NoisyVision , which is special too.
I am trying to learn again how to live.
Sometimes I am in a good mood, sometimes in a bad one but I know that life is beautiful and that I can still live.
I am going to book a fly to New York. Travelling makes me feel good.
I am realizing that I am still loved by a lot of people but I am also able to let someone go.
I am quite conscious that I am able to enjoy more and more each moment of my life.
It seems that I have a new opportunity of life.
Somebody advised me to wear glasses which can protect from blue lights and rays.
Do I have to put on again those glasses I hated a long time ago?
Life is making fun of me, but it’s better that I laugh more than life.
Perhaps I’ll fall again, but then I’ll recover again: probably mylife will be a continuous sequence of falls and recoveries
Meanwhile do you know what I am going to do?
I am going to top of the Empire State building.

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