Wednesday, May 10, 2006

msb-0018 Gift of giving

Feedback goes first, so here goes.

You're not rid of my voice and my 5 tunes per show any time soon. But I hope not to be doing this all by myself forever.

I feel good about all the feedback my wife got about this podcast at the caregiver's confab two week-ends ago, or at least the idea behind this podcast.

The general consensus is that its a good way to fill the great sucking void concerning MS and MS news in the general for-profit broad-band media.

I also am getting some more feedback from other sources.

Apart from trying to meet me face to face, I've just paid for and activated the external number (201)984-7448 and my SkypeIn voice mail so you can call me and leave me messages from anywhere anytime with or without a computer, or you can call my Skype account at MSBPodcast.

(I'm going to have to get some new business cards printed. :-)

This podcast is a great way to combat the loneliness and feeling of isolation that MSers get from the general lack of knowledge about the disease, and the pervasive lack of exposure in the media.


I've been reading "Robin Hood Was Right", by Chuck Colins and Pam Rogers (ISBN: 0-393-32085-5) and reading about the history of "The March Of Dimes" covered in "Polio An American Story" by David M. Oshinsky (ISBN: 0-19-515294-8)

I am getting and gaining from a deeper understanding of the democratization of philantropy.

In my case, its leading to trying to run this podcast for you and for the various MS organizations, pharmacos and service providers by running along the bleeding edge of technology razor and making "wire" time (as opposed to air time,) available to us all.

Yes its all coming out of my pocket right now, but we're worth it, damn it.


Its about time for us MSers to take advantage of what the internet has brought us.

Shining glass fibers and copper wires that unite us in our paradoxical sense of being alone.

Its a very disconnecting thing, this isolation and lack of empathy among the general population, who simply can't relate to our experience of life.

They can't "grok" it because they just can't, anymore than I could "grok" it before getting this disease myself.

But I did.

Since then, since the stupid disease became an undeniable fact in my life, I have given some thought to all of the other isolating factors at play in our life.

Its sort of warped.


Technology, as exemplified by the iPod, can be the ultimate isolating factor.

We can seal ourselves off behind our earbuds.

Getting fed content by the media conglomerates, who can collect money broadcasting the noise with which we shut ourselves off from everyone else.

That was the state of things with Sonys' Walkman.

Tastes in music didn't matter. I could be listening to "Rat Music for Rat People" or "Sibelius" or "Bach" and I was alone listening to whatever I'd paid for.

Now with Podcasting, I can listen to whatever I pull from the 'net.

While that could be not much better that listening to a Walkman, because its the 'net, I have so much more music available to me, stuff that the record execs ignore because they can't figure out how to make money from it, (lets face it, they can't figure out a lot of things,) and I can give and get feedback.

I am no longer alone; because its the 'net I am no longer limited to whatever the media conglomerates find it the most profitable to sell me.

They can't "grok" podcasting anymore than they could "grok" MS, because they just can't, anymore than I could "grok" it before getting this disease myself.

But I did. And I do.


My tastes in music are only partially reflected in this podcasts.

While I have a really extensive collection of music, 800+CDs and 400 vinyl albums, I can't share any of it with you.

The RIAA, ASCAP/BMI and the entire suite of lawyers related acronyms would haul my skinny li'l butt to the hoosegow if I played any of it without paying them.

Not that they created any of it, composed any of it, or played on any of it.

No, they just want me to fork over all my dough because their clients, the record companies, don't really care about promoting the people who did create it or composed it or played on any of it.

So I'm stuck bringing you the music I can play. Luckily, there's more and more of that. It's not as extensive as I'd like and there are some examples, some artists and some genres that I doubt I'll ever be to play. There was only one Edith Piaf and she's walled off from this podcast as surely as if she'd never existed.

In their view, the politics of scarcity still apply.

That's why they're trying to turn the internet, a scalable, asynchronous medium for content delivery into a streaming medium under corporate control with rate tiers for delivery reliability.

They're selling you a load of crap. With podcasting, we don't have to depend on them for a damn thing.

We don't have to be reduced to mere spigots for mammon while our needs for meaningful information go begging.

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