– Hello Mom, it’s me.
– Hello Dario.
– I met a guy here, at the hostel, he told me that Retinitis Pigmentosa leads to blindness.
– How? What do you mean?
– He says that he has done community service at Italian Blind Association and he met many people with this disease. Some are already blind.
And now what do I do?
I got to know like this almost by coincidence. And I told my mother on the phone like that.
I was 19. I was attending the first year of University. I had enrolled in Industrial Design in Milan, 300 km from home. I had started on a course of study for a profession where the sight is essential, necessary.
But what could I do? It was already a big step leaving home. Should I have drop everything and enroll in Philosophy? In Psychology? I could still see enough, I had my driving license, I could ride the bike. At the time I was not ready to start living as a visually impaired.
That day, that phone call, they often come to mind, and are part of a story I have told too many times, to all ophthalmologists and ENT specialists that visited me. I repeated each time they asked me the story of my diagnosis and how I started not to hear and when I started not to see and when I had cataract surgery and when I put the hearing aids and when I did the DNA test.
Maybe I should write this story. To write down dates, days and all the audiograms and encephalograms and visual fields that I have collected over the years. I should write here my medical history, so I can print it and give it to the next doctor.
I’ve seen too many, of all religions and all nations.
I knew only I had to put two horrible pieces of plastic in my ears to watch the TV, listen to the teacher. I had to grow my hair to hide them and feel, for a few more years, omnipotent .
Those long curly black hair were beautiful. The wind drying them while I was riding my Vespa.
There is dust on that engine. Dust on the pedals, dust on my speed.
My shoes, my feet, they will not have dust. They have earth, sand, water.
Below and in and out my feet have the roads I began running. There are many, sometimes I think maybe too many.
The more you walk and the less you choose. You try them all to find out that you have not yet found the one to home.
Is this traveling?
To continue to search for your best route, the one you won’t get tired to run again and then again, tomorrow.
I wondered if my travelling is perhaps an escape, a way to hide in a different way. Now that I no longer have long hair am I looking for another shelter? From what?
Maybe I should tell a story different from the one written by doctors.
They all say the same things.
They all say it can only get worse.
They invented the moon, they found a way to make me see stars in a box of glass, they have discovered how to restore sight in mice, but me?
Should I wait for them?
I still greet myself in the mirror mistaking me for my friend, I fall down the stairs as if I do not hurt, I slash my face as a warrior, I piss on me because I do not find the bathroom, I open doors already open, I pay the double because I do not recognize the coins, I do not see a woman until it is too late to ask:
– You’ve got the time?
However It would have been an trite excuse.
No one asks for the time aymore.
Everyone knows what time it is.
I know as well. I would rather abandon myself and not have time, money or anything.
Sometimes I’m afraid it’s all just an illusion, this courage I try to hold. Instead I am always a little fragile, hidden behind the closing diaphragm.
And in the meantime I wish that the light entering my eyes would record the world I see
I would like to print images inside of me and I have no need, ever again, to see.
Today, more than 15 years later since they put into my account a syndrome, I begin to walk with a stick, still put the pieces of plastic in my ears, I hold the arm of a friend without giving too much explanation.
I dial the same phone number, yet answers my mother, who for me has never changed voice.
She still listens to me. Perhaps more afraid than me.
I have learned to face this future, black or blurry as it comes. I learned how to look in the mirror and see more than them in the chink my eyes still have.
I do not know what I see.
And that’s why I’m not afraid.
They say we fear more what we do not know.
And you do not know anything. You do not know when, you do not know if.
Meanwhile I wait. Only living.
No one has yet told me how it is, from there.
From the world that might not be so bad.
Too many times I told my story and I’ve forgotten how to do it.
I do not want to tell my life as an old man in decline.
I was in the world by land and sea, and often I am amazed myself of how I learned to dream, but sometimes I am seized with the disquietude I might want to stop, and quieten a bit.
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