The paralysed blogger who logged on to love
By Lianne Kolirin
RONEN Porat has a lot of friends. Some are from childhood, some are from the army, and dozens upon dozens are people that he has met over the internet.
But Porat is not your average blogger. He shot to fame in Israel in 2003 when his story grabbed at the collective heartstrings of the nation. What made his tale so different from the millions of others floating around in cyberspace were the challenges that he overcame to write it.
Ronen was diagnosed with amyotrophic lateral sclerosis (ALS) in 2000, aged 30. Also known as Lou Gehrig’s disease, ALS is the progressive, usually fatal, motor-neuron disease which also affects British physicist Stephen Hawking. Ronen first noticed a weakness in his left hand while playing basketball, dealing cards, and shaking hands. Now it has robbed him of almost all of his physical capabilities.
But inside his paralysed and speechless body, Ronen — who is a graduate in industrial design — remains lucid and alert. Three years into his disease, he emailed the editor of Ynet — the web version of Israeli newspaper Yediot Achronot — with the idea of an online diary. Editor Ilan Itzhayek initially dismissed the email as junk, but fortunately returned to give it a second read.
Ronen “typed” his message with the aid of modern technology. A specially designed device attached to his forehead allowed him to communicate with his laptop. Moved by Ronen’s powerful story and sparkling prose, Itzhayek commissioned the series.
For six months from September 2003, thousands of online fans logged on to Ynet to read Ronen’s compelling blog, dubbed “An Optimistic Journal”. Although it was intended to raise awareness of the disease, the diary was less about ALS and more, as Ronen described it, “a private lens… into my world and my life as a person whose body and speech have been paralysed by a neurological illness”.
The blog spawned a thriving forum and was last month published in its entirety as a book, entitled Eventually, An Angel Will Come. Yet to be translated into English, it includes feedback from forum users, many of whom have since gone on to set up a support group for ALS sufferers and their families.
Contrary to what one might expect, the book does not make for depressing reading. Introducing himself, he writes: “My name is Ronen. I’m 33 years old, divorced, unemployed and I live with my mother. Like George Costanza [from Seinfeld], bar a few minor differences.”
The diary also led Ronen to an unexpected romance. When an old friend whom Ronen describes as his “laptop doctor” emigrated to America, he recommended that his sister, Tali, take over as Ronen’s technical adviser. The pair knew each other from their younger years, but were never close.
Late last year Tali, 37, a divorced mother of two, moved in to the Holon apartment as Ronen’s girlfriend. In his book, Ronen describes Tali as “my reason for getting up in the morning”. According to her, the feeling is mutual.
“He’s my angel, no less than everyone claims that I’m his angel,” she says. “I believe he was sent to me. I don’t believe that I could have loved someone else like this. It’s a special connection.”
Ronen comes across as a likable, ordinary guy whose life has fallen foul of an extraordinary twist of fate. The diary was his link to the outside world, allowing him to share his thoughts, dreams and passions. He writes: “The things I really miss are the small things that everybody has. These include backgammon, football, swimming, eating, picnics and dancing to loud music in front of the TV. Let it be a reminder to you: the big pleasures in life are priceless. They come for free.”
He writes movingly of all the key players in his life, in particular his ex-wife, his dog Soya, his Filipino carer Bobby (“my mashiach”) and his mother Yael, whose life has been blighted by tragedy and loss. Her father perished at the hands of the Nazis, the eldest of her three sons, Yoel, died in the Yom Kippur War, and her husband died from a mysterious neurological disease — which doctors now realise was ALS.
Ronen writes: “But mum says my illness is the worst bomb to fall on her. She says it’s even harder than the death of Yoel. That’s understandable: in 1973 she had a family around her to share her grief. Today she goes to sleep alone, with nobody to cry to. But you’d never know it to meet her. Sorrow hides its ugly face.”
Over the last couple of years, the muscles in Ronen’s neck and forehead have weakened, making it virtually impossible for him to type. Yet the publication of his book has resurrected the interest in his story — and particularly in his newly added instalments.
And it also enabled him to find love with Tali. As she helped Ronen with his IT needs, the communication between them grew. She also helped to design a letter board which enabled Ronen to “speak”.
She recalls: “I came to look after the computer, but then saw that I could make things easier for him.Then we started communicating more.
“Slowly, though, I started to notice something different. I would stand in front of him with the board and feel shy. To look in his eyes did something to me. It’s hard to accept that you are falling in love with somebody who is paralysed. I tried to work out if it was pity, but I had butterflies when I stood in front of him with the board. He would look at me and I would get all confused.
“We have disagreements like all couples, and even arguments — but it all takes place on the board. I have had situations where we are arguing and I want to leave.
“You want to leave so that he will chase after you, but there’s none of that so you don’t go, and that gives him the opportunity to say what he really wants to say. Disagreements and arguments end within moments.
“We have a relationship like other people, but it’s different. There’s a lot of love, feeling and understanding.”
She adds: “The only thing that I often miss is the chance to speak to him, to simply hear his voice. In my dreams he’s often laughing with me and speaking to me.”
Tragically, Ronen is no longer able to continue writing, and today his only means of communicating is through subtle eye movements that only Tali can understand.
Working hard to try and find another alternative for him, she says: “He manages to say what he wants, but it isn’t what it was. He still has some movement in his mouth, so I hope to try and work out some kind of solution for him.”
The cause of ALS remains unknown and there is no cure. Life expectancy varies, but only 10 per cent of sufferers survive for more than a decade.
“I can’t think about it,” says Tali. “I can’t think about a day when I will get up in the morning and Ronen won’t be in this world, in my world. I can’t imagine my life without Ronen.”
In December 2007, Ronen “wrote”: “My Tali is the happy ending that makes everything better, the big miracle that befell me after all the words and letters ran out. She loves me, I love her. A lot, more than anything in the world. I would never have imagined that she could happen to me. Because of her, I’ve started to believe that maybe there is such a thing as life after death.”