Talking, talking, talking.
There is the need to talk.
There is the need to share the phases and the moments of this degenerative disease, so maybe it feels less heavy.
How old you are when I were you diagnosed with Retinitis Pigmentosa? (RP for those who know it well)
I wrote this question in a Facebook group where members are mostly people with RP and Usher Syndrome, or their family and friends.
An invasion of comments followed.
Name, age, years of RP. One after the other.
Nearly 70 years of Retinitis Pigmentosa follow one another together with the comments.
Then someone started adding the city of provenience.
With some knowledge of Italian geography you could generate a mental map that could be easily be reproduced here by adding your own pinpoint.
But the answers do not want to be numbers or statistics.
They are like an outing, a way to say “I am here”. I am 53 years old and I was diagnosed in 2009, 17 years old diagnosed when 14, 36 years old I found out three years ago, … Daniel, Roberta, Gaia.
Stories, names. All born with this disease. But the RP comes when she wants.
“Hello, I am RP. You will get to know me over time, I’ll stay with you forever.”
I’d like to tell her.
She is a friend-enemy that I did not ask to meet.
But she stays.
Annoying. irritating, stressful, depressing.
What a friend is this?
Maybe it comes from here the need to confront, share compassion, ask questions. A true need and it helps to forget the fear.
Who are all these names, and what are their stories?
What makes them write their age, their city? I guess they are the knots of a network that connect us, protected inside a virtual group where we know that for a Facebook notification time, we can be protagonists and let people know that we’re here, and we are not alone.
I’m missing something in all this talking and sharing: a healthy and loud laugh!
Oh yes, what a relief would be!
And maybe it is also curative 🙂
Cousins, the respected editor of the Saturday Review, had been given six months to live. He’d been diagnosed suddenly with life-threatening ankylosing spondylitis, a painful, degenerative disease of the spine. Cousins, who was in constant agony and quickly succumbing to paralysis, checked himself out of the hospital, which in his view “was no place for sick people” and into a hotel where under the supervision of a doctor, he began taking extremely high doses of Vitamin C punctuated by a regimen of intense belly laughter.