Archive for the ‘work’ Category

Twitter: messages in bottles from stranded naufragés

Tuesday, August 10th, 2010

A very dear friend Twittered last night that he might be dying.*

Depuis 15 h, ma température est passée de 99,3 à 100,7. Je suis conscient que ma vie peut se jouer dans les heures à venir. Sentiment d’aventure…

He’s worried about the folks he’d leave behind.

Il y a des gens ici qui ont besoin de moi. Je ne dis pas émotionnellement, bien que cette dimension soit évidemment présente, mais directement, de manière très concrète, parce que leur vie est imbriquée dans la mienne. Je ne connais pas de tristesse plus profonde que ce sentiment de devoir, peut-être, abandonner ces gens qui m’ont donné leur confiance. À nouveau se battre.

He has a form of muscular dystrophy. Ten years ago he weighed 56 pounds, including the three steel rods in his spine; today he probably weighs less. He has trouble breathing because of his muscle wasting and he has just caught some sort of nasty cold from one of his staff. She was really really sick, so he is expecting to get really really sick, and when someone in his condition gets that sick they don’t always get better. He was watching his temperature go up last night and wondering whether to call an ambulance to be taken to the Montreal Chest Hospital. I’ll be making calls later this morning to find out the outcome.

He and his sister (who has the same genetic condition and lives in an adjacent apartment) do some wonderful, intensive work for people who are marginal in our society. They have employed illiterate people, drug addicts, people without family, and immigrants – particularly from Haiti. They employed me. They don’t pay much: they receive an allowance from the government to hire staff for a little over minimum wage, so the staff they hire are people who are unable to find better-paying work. They teach them french, they coach them in relationships, they explain Québec culture and help people figure out how to cope with their new situations. They have shared their living space. Whatever they can do to help someone develop their full potential. Most of all, they offer profound, unjudging friendship.

My friend is a disabled man without paid employment, but far from being a burden on society he is a householder who will leave behind people who will be poorer for his loss.

We all know he is going to die. We first met in the late eighties, when he was seventeen. He thought he might have ten years left then, for the last five of which he wouldn’t have the strength to lift a pencil. He’s outlived everyone’s expectations. But we all hope… not yet. Please.

*** *** ***
A friend responds, “What an incredible opportunity to thank him for all that he has meant to you and the world.” Wise advice, and I will follow it.

_______________________________________
* If you’re wondering why these tweets are longer than 140 characters, it’s called Twitlonger.

How to deal with Asperger syndrome at work

Wednesday, September 30th, 2009

The always-delightful Penelope Trunk is writing a series this week. I think it’s going to be about how to deal with work when one has Asperger syndrome oneself.

I showed the first article to my beloved.
http://blog.penelopetrunk.com/2009/09/29/this-weeks-series-how-to-deal-with-asperger-syndrome-at-work/

“Yes, I’ll get to it. It’s in my blog reader.”
“You follow Penelope Trunk?”
“Of course. She’s the idealized version of you.”

Interesting. That was a nice thing for him to say, right?