The residual self image can be powerful, but the revised self image can knock your socks off

by Michael S. Kaplan, published on 2010/02/19 07:01 -05:00, original URI:

This is one of those posts that has nothing to do with anything that I usually tend to write about here. One that makes me wish I had the foresight to add a special "OnTopic" tag to put on blogs that I wanted to show up in the front page of the GoGlobal Feed. I should write some code to scroll through every blog in this Blog (there are almost 3000 of them now1) and the ones with tags beyond Potpourri and iBot and Multiple Sclerosis would get the new OnTopic tag added, while the remainder would get the OffTopic tag, instead.

Maybe I really should dig into the code to do all that with the tags2, I'm pretty sure the capability exists. For now, it will have scrolled off within a few days; I'll look into the tagging thing soon. I really, really, really don't want two separate blogs.


I was reading the Esquire article by Chris Jones (Roger Ebert: The Essential Man).

It really moved me. I mean, really.

I have redefined my work and my career and my life several times due to my disease and yet in reading what Roger Ebert has done I feel like a mere dilettante.

There was one part in particular that moved me. It became a "quote of the day" for Twitter, which became a status for Facebook. At the bottom of page 5 of the online article:

...Ebert and Chaz go out for dinner, to one of their favorite places, the University Club of Chicago. Hidden inside another skyscraper, there's a great Gothic room, all stone arches and stained glass. The room is filled mostly with people with white hair — there has been a big push to find younger members to fill in the growing spaces in the membership ranks — and they nod and wave at him and Chaz. They're given a table in the middle of the room.

Ebert silently declines all entreaties from the fussy waiters. Food arrives only for Chaz and a friend who joins them. Ebert writes them notes, tearing pages from his spiral notepad, tapping his fingers together for his words to be read aloud. Everyone smiles and laughs about old stories. More and more, that's how Ebert lives these days, through memories, of what things used to feel like and sound like and taste like. When his friend suddenly apologizes for eating in front of him, for talking about the buttered scallops and how the cream and the fish and the wine combine to make a kind of delicate smoke, Ebert shakes his head. He begins to write and tears a note from the spiral.

No, no, it reads. You're eating for me.

The emphasis in red is mine, but the underline is not.

That notion is one I carry with me a lot these days. In so many of the things I can't do anymore, from churning out dozens of KLOCs to skiing to roller skating to ice skating to dancing to running to even walking some days. Things that I used to love, things that I can close my eyes and see happening still, things that I either know I will never do again like I once did (despite expensive lessons in some cases!) or know that I will at best never do as well.

And when people I know are doing those things, it can be hard sometimes.

That is a particularly bitter thought, one that I would really prefer to be unworthy of me, yet sometimes I sink to those particular depths.

And yet other times, when I move past that bitterness it feels like that desire to see people I know, I like, I care about to do those things so I can enjoy them is a very real feeling.

They aren't necessarily doing it for me, mind you. They are doing those things for themselves and though I don't fancy myself a voyeur I love to watch it and hang on the descriptions of the things I don't see myself.

It is like living vicariously through them.

The girl I am going out with is a great example of this. Not a perfect one (she doesn't write code, after all!). But she skis and runs and I love to watch the status updates and listen to her descriptions of what happens later.

We dance and me on my iBot in the very pale hint of what I used to be able to do and nevertheless see her move and that she enjoys what is happening as much as I am and I easily can imagine that it is all happening in a way where I am doing so much more. But by the look on her face she is not troubled by my lack, and sometimes it seems almost like she too is imagining these things even though she never has seen them before3.

At work I can do a training or write a prototype or call a meeting or write an email that can alter a direction on something that in my view might not have been happening the best way it could have. And when I meet new people they will regularly tell me (after making sure that I am the one who writes that blog4) that it was helpful or important or essential or life saving for some project that they were working on. And I know that those dozens of KLOCs I'm not writing are now millions or hundreds of millions of KLOCs being written by others for which I was a muse for a moment.

Like that thing from The Matrix where people see themselves in the matrix as they imagine they are - their residual self image and so on. I still have that. And I think about that list that in bitterness I decry my disease has taken from me, and I watch them doing all these things and it is like I am dong them still. Only this revised self image is even better, in many cases because the view is so much wider than it ever could have been were I still doing it the way I was.

When I think about all of that, I realize love my life more than I ever did when I was actually doing all of the stuff that I miss doing so much. As the title suggets, my residual self image can be powerful but the revised self image can knock my socks off. And not just because it is balancing on two wheels....


1 - I briefly even had more than Raymond on this server, though between my blogging sabbatical and the fact that I usually write just one a day while he writes more probably has him on top again!
2 - My manager would probably like that too....
3 - There is a particular dearth of people who know me from when I could dance, so she is hardly alone in that category.
4 - By which I mean this blog, of course!

William Overington on 21 Feb 2010 2:13 AM:

Hi Michael

I found the following serendipitously in a list of petitions.

I have now found the following page with a video of a recent television item that I saw in the UK.

I hope that this may help you.


Michael S. Kaplan on 21 Feb 2010 11:02 AM:

Unlikely, given the shoddy nature of Dr. Zamboni's work. I'm not a UK citizen, but even if I were I would not sign the petition (I prefer science, which this procedue is not, yet at least).

I actually hold out more hope for treatments like the new Ampyra, which has been proven to be useful....

Mrem Mac on 22 Mar 2010 6:37 PM:

This is 2010 Michael, vascular irregularities have already been found. A problem found - No drug company has ever came close to to an effective treatment, their motivation is to extend treatment for profit.

A problem found and rectified by surgery has proven to be very beneficial to many MS patients. Ask Dr Collins the top heart surgeon, a two timer at treatment. I'm guessing a heart surgeon is a strong recommendation.

Michael, have a good read, you'll find historical evidence pointing to this same conclusion.

Michael S. Kaplan on 22 Mar 2010 7:50 PM:

I HAVE read.  Actual scientific study. Which this is not -- yet. Janetta's MVD has similar proofs for MS related TN and that has been proven to be crap, so don't rely on the histories....

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2010/11/15 The bizarre variation of a skeleton that is iBot + me, to a Kinect

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