Thursday, November 09, 2006

Jansenist writes:


It makes perfect sense to me that the near asphyxiation and the tube insertion were very psychologically bruising for you. They would be real tough experiences for me, for sure.

I remember the day you called me almost three years ago. I think it was the day they sent you for an MRI. You didn't know what you had, but you were pretty sure it was something very serious.

"John, I am not afraid to die. It's my kids..."

I knew then you were giving it to me straight. I knew it was the truth and that I would feel the same way in your shoes.

I hope you live a good long while, long enough for a medical breakthrough. But the near asphyxiation forced me to face the reality that in your condition something could happen in the short term that kills or severely weakens you.

So here's what I need to say to you:

Ronululu wrote a while back: "My words can't convey the joy of being your friend over the years."

Right on. Our friendship has been a great source of joy for me. I have so many good memories.

And I am very proud too that you count me among your friends. To be a friend of brainhell is to belong to a select group. A lot of people's applications have ended up in the shredder over the years. I may not have met the other members, but I know each has to be very special. You are not the kind that keeps people around just so you have someone to talk with.

You have influenced me in so many ways just by being the person you are. Ways that I haven't even thought about yet. If you die, I think it will take awhile, perhaps years, for me to realize the full extent of your influence.

I don't know anyone else like you and odds are I never will. If I ever do meet another brainhell-like person, I will consider myself very fortunate. (Right off we'll be able to talk about the importance of saving old tofu containers in order to have molds for making candles out of our dried doodoo in the aftermath of a nuclear attack or some other catastrophe that severely cripples the infrastructure!)

Turning now to practical concerns:

1) Given the increasing difficulty of speaking, is there something on the technology front that will allow you to
communicate?

2) A while ago you blogged about something that appeared in a San Franciso paper. Some researchers seemed to think they found the protein that causes the damage in ALS. I expected after reading it that some ALS group would be putting out a news release within a few days saying they are funding more work in this area. But I haven't seen anything. Have you?


Thanks, Jansenist.

1. I have a laptop computer that can speak.

2. No, I haven't heard anything more on that.
|
Weblog Commenting and Trackback by HaloScan.com