It is hard to live

Tuesday February 28th, 2023

The path of a degenerative disease leading to gradual loss of vision is very difficult.
There are no proven, one-size-fits-all tools to help cope with this deeply individual, lonely and unique situation.
In practice there is you and only you with your way of seeing and with your course, slow, fast, different from that of any other person who has touched the same fate.
I am 44 years old and the last eye exam gave me a big blow.
It doesn’t always take an eye doctor to tell you you’re getting worse. The other way around. Daily life and practical findings are much more precise than an orthoptic chart.
Let’s rather say that when the deterioration is measurable by an orthoptic chart it means that it is significant.
We visually impaired or we suffering from Retinitis Pigmentosa notice a small glow, a slight blur. We are able to grasp the difference based on the light conditions, sometimes also based on our mood and state of stress.
These nuances are certainly not measurable with the tools of an ophthalmologist, who, at most, can look inside your eyes and see a bubble of liquid that you don’t know you have.
If this is the case, then some hope is rekindled, because the liquid bubble can be  dried up with some medication.
Even if the ophthalmologist sees a cataract, one can be partially calm because it can be removed and in many cases good clarity is recovered.

It’s a different matter when everything is within the norm of degeneration, because then the ophthalmologist looks at you and tells you.

“There’s nothing you can do, as you know, Retinitis Pigmentosa causes worsening and this is one of them.”

You walk out of the hospital with your pupils still dilated. You see nothing.
You wish you had real tears, not those of the burning.
You wish you had tears flowing from your heart to lighten this huge weight they just placed on your chest.

But they don’t come out.

In the following days you continue to feel bad because you keep thinking that you have gotten worse.
You knew it was coming but you had recovered from the last relapse and were hoping the next one would come later.
It’s only been four years since my left eye went from 4/10th to some 20th in a matter of weeks.

You live in intervals between diagnoses. Periods that tend to be shorter and shorter because ageing, lifestyle and nutrition are also involved.
Maybe you should change lifestyle or maybe put your eyes inside two glass jars filled with formalin.

Meanwhile everything is so difficult.
Especially if it’s winter, the sky is gray and you’re alone.
I don’t know if this malaise has a name.
Is it depression?
The name doesn’t matter.
Because even in this case I don’t see many possibilities for a cure.

You would like to fall asleep and never wake up again.
And in the morning, when you wake up before the alarm, you wish it wasn’t another day to live.
And instead you have to live.
I don’t want to live.
Not today and not tomorrow.
I don’t even want to die.
I want to be put in formalin, together with my eyes, or in the fridge, together with Walt Disney😉
I want to stay a few weeks and wake up when enough time has passed to forget about this black hole.
Because memory and thoughts can’t freeze right?
Only the body can be frozen.
THe matter.
The stuff I’m made of, my eyes are made of.
Damned eyes, suffering from a rare disease.
Oh yes.
Today is World Rare Disease Day.
And who gives a fuck.
Today I wish I wasn’t alive.
And if you read this text spare your worries.
There is nothing you can do.
This is how the visually impaired feel.
Maybe other people feel the same way too. Maybe even worse.
But that doesn’t ease my pain and sadness.
So don’t tell me that there are those who are worse off, that there are those who have already lost their sight completely.
Save yourself this nonsense.
Because now I don’t care about others.
I care about me and my sadness.
That will pass.
Perhaps it has already passed.
Because writing is for this.
To remind you that… fuck’em all
Not because life is beautiful and worth living.
No. Fuck’em all because there’s nothing to do and because the essential is invisible to the eye.
Fuck off-
We all know that it is a beautiful phrase to make it clear to those who see well that it is better to be happy for the embrace of a child rather than because he wears more expensive shoes than those of his friends.
But for the blind and visually impaired, the essential thing is to go pee alone even in the center of Paris.
Fuck’em all because even this time I’ll raise up again.
I just have to remind myself that the will to live has nothing to do with mood, sadness, discomfort and fatigue.
The will to live is in the very fact that I recognize when I’m drowning and I don’t get agitated to stay afloat but I learn to live in apnea.
Every now and then I go back to the surface, just to get some air.
I go back down.
I want to keep drowning until inevitably and almost unknowingly I come back to the surface.
There will be a miraculous piece of wood to hold on to.
And continue adrift to be rescued soon.
Today is World Rare Disease Day.
Remember that having a rare disease is not just having something with a name that no one has.
It’s all this shit.



  • Dario grazie per le tue toccanti parole! Mi hai regalato una consapevolezza che non avevo di come si sente mio padre e ti ringrazio davvero per il tuo dono

    • Grazie del tuo commento.
      Aver condiviso le mie fragilità mi è costato molto.
      Ma l'ho fatto sperando di trasmettere proprio quello che ti è arrivato.

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