msb-0014 Illness as something other than a metaphor

Feed back goes first so here it is.

Juliana is was lovely to read your email.

You are indeed getting the whole point of putting out these podcasts. We are finding a voice and no longer have to care about being ignored by broadcasters and the mass media.

MSBPodcast is one of many, oh alright, of a few podcasts out there, but it is the first of those to bring the tools of the media to the people who up 'till now weren't able to find a voice amid the clamour.

I have no competition. I have collaborators. There is plenty on room. In fact there is all of cyber-space.

I am glad that Todd Maffin and his wife Kim are doing their podcast: www.MSPodcast.org . I listen to him and his wife and I hope he is listening to mine. I'm trying a different tack to accomplish the same goal. We are bringing our voices to MS. There is no such thing as being too loud in this "Storm Force Gale" of competing media forces.

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The font contest is now re-opened. I've decided that while the Canadian MS society is locked into the logo type, they now only have an outline of the M and the S to work with, we shouldn't be limited like that. I'll still give $50 at the iTunes Music Store to anyone who can create or adapt a font for use on this site and for this podcast.

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On Friday, I sort of re-discovered Tai-Chi but this time with this handicapped teacher. I don't have his entire story, yet...

He has agreed to be interviewed on my podcast so that will be coming out as a special edition.

While I have neurological scarring, he has physical scarring. But, seing that I am moving so much better and faster after one session, a new plateau for me, I am sure that it is actually shrinking my "somatic cage" closer to my own physical boundaries.

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Yehah!

I reached a thousand downloads on Sunday April 30'th 2006. Average audience of 55 with over 175 once on show #7.

No they're not all at once, but it is a now over thousand downloads.

To celebrate, you're getting a change of format. I'm coming out today and Friday, as you can tell by the escape, uh, release of this episode on Monday evening.

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And Lee had a great idea.

I could tailor a show around one person, their taste in music and their personalities.

Like my friend Eugene says: "Sounds like a plan, man". (He's a great Solaris SysAdmin. He's taking care of my Linux box, and he a really good friend.)

If you'd like to hear a podsafe version of you on the show, drop me an email or Skype me. (I received a call from Poland earlier. This stuff works!)

Email and Skype are on the left-hand side of the MSBPodcast.com page.

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Now on with the 'cast:

I want to open with an apology to Susan Sontag for my choice of title for this episode.

[seraphim]

I read, understood and loved her book "Illness as a Metaphor" back in 1979. Actually, I'd recommend it to anybody who's going through any kind of major medical caca. With her it was cancer. She's since revised and updated in to include the reaction to AIDS.

It can infact apply to being cast as a medical pariah due to any condition.

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I'd been reading a tome on "Economic Geography" for school.

Apart from the fact that it seems to be written by Post-Modern Phemenologists, (the kind who make arguments like: "I am a poet therefore everything that I write must be poetry" and proceed to scribble something on scraps torn off of old grocery bags things that look more like laundry lists,) there is no mention of made throughout the entire book of what happens if they, or anyone else, ever gets sick.

This is something that I and I suspect all of my audience are intimately familiar with.

As are all actuaries and insurance companies.

Yes, we got in front of whatever bus it was that hit us, and are now lying in the middle of the road, obstructing globalized and regional economic traffic.

But what role do we, a small but growing percentage of the aging world population, play in the economic realities of the world.

We are the reason health-care costs are escalating.

If it wasn't for us, there would be no need for health-care.

And screw geography, the health care costs are escalating everywhere for everybody.

Multiple sclerosis may be more prevalent in the northern hemisphere (in northern Europe, continental North America, and Australasia, it is estimated that about one of every 1000 citizens suffers from multiple sclerosis, or about 2.5 million people are afflicted) but Dengue Fever is almost unheard of up here in the north. (There being around 40 million cases of dengue fever and several hundred thousand cases of dengue hemorhagic fever each year.) (I'm quoting wikipedia epidimiology stats for these figures.)

Dengue Fever is in fact a bigger problem for humanity than MS is, world wide, but they're even poorer than we are and we all know what makes media run don't we? Money.

The fact remains that, between MS, MD, ALS, CF, DF and the rest of the aplhabet soup of human frailties, a statisticaly significant portion of the human race is, at one time or another, sick with and/or slowly dying from something or other.

Up to now, we all have been quiet compared with the general clamour.

A great deal of the silence was because we could not compete with the loud voices of all the people screaming for cheaper gas or cheaper government or cheaper S.U.V.s and all of the other people screaming for them to buy their new and improved Turnip Twaddlers.

And the people who are paying the price for that silence is us.

Well, I might suggest that we speak up more effectively and efficiently; and with a single loud voice.

This podcast, amongst others, and the internet's capacity to unite us with shiny glass fibers, are parts of the megaphone we have to use.

If would be more efficient, read lower in cost, to use the internet to cut through the noise.

When I'm ailing I do not want to have to hear all about what Madge/Madonna, Hale Berry, J.Lo. or some other vapid, vacuous and vain celebrity is barely wearing this season.

And the religiosos with their Bible or Torah or Q'ran or Veda don't even enter into this discussion.

When I'm ailing, I want information from the people who can do something about my condition. I want to read about and hear from people who are competing to get treatments to me.

(Whaddda ya kno'? I am a capitalist after all.

I dont know whether to cheer or to lament that.

Sickness and health are not market conditions.

They don't conform to the general 'shape' of market economics.

I don't know what could/should be done about fitting in the warm and fuzzies of a socialist perspective with the cold hard facts of market economics...

(Actually, that is part of the malaise afflicting France. The populace are leaning left against the marketeers who are leaning right.)

I'm thinking that it might make more sense to reserve a portion of the global GDP in proportion to the ratio of sick to healthy people, and to hold it to pay for medical expenses.

Then the health sector can apply market forces for their portion of the total pie.

I mean there must be some way of injecting a bit of reality into capitalism.

Even arch capitalists get sick.

Otherwise I'm dead to the wider world in all but body and spirit and I have more to contribute.

That would be so inefficient, and I hate inefficiency.)

Off my soap box and back to the topic:

I can't hear my news because the brodcasters are busy trying to extract the most money from the greatest number of people.

That means air time goes to whom ever can afford to pay the most bucks per second.

They are exploiting a mode of making money that is only slightly over a hundred years old and it is based on the economics of scarcity; who really owns access to the air waves?

And if that leaves me and my view of news off the air, I should drop dead?

"No I don't want to buy a friggin' Turnip Twaddler. I don't care if its supposed to be new and improved... Piss off."

Pharma. Co.s, health-care providers and service workers can all benefit from the same low cost megaphone that I am using, if we work together.

Not cooperating mind, get real, but a friendly competition on a level, open and uncrowded playing field.

What I am proposing is a new way to use media, by avoiding it all together. Podcasting is a better choice than the current silence enforced by the turnip twaddler pushers.

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I have attended a few simposia, a few conferences and I'm no dummy and I've learned a lot but they have articles and presentations with titles that sound like they're way over my poor head.

Its not a question of dumbing stuff down, and I hate it when people talk down to me, but its a matter of finding a way through the jargon laden verbiage.

I hope Lee's not going to bee too mystified at the next caregiver's event. (May 7th, 2006 in New York City.) Knowing her, she won't let herself be too intimidated. She's going there to do something she's really good at, network with people. She really much better at doing that than I am.

Maybe I can persuade her to speak into the mike as she tell me about it. :-)

That's what I hope this podcast brings to my audience. That's what Todd Maffin and his wife Kim bring to me with their MSPodcast.org

I don't have to talk down to anyone but, really, I avoid sesquipedalian words, with mixed Greek and Latin roots. (Just like I won't eat food containing ingredients that I can't pronounce.)

If not, if I'm as guilty of bullshitting as the rest of these people, email me off of the web page at MSBPodcast.com and tell me that I'm full of crap.

Lets see if we can all find a way to use these podcasts.

I know what I want from it.

Now, you people can get some feed back to me, so you can be counted and heard too.

And the pharmas and health service cos. can get on board too. We'll be talking to them and hearing from them too. (And since they stand to make some money from us, they should pay to run their ads. Its a lot cheaper than mailing the packages to me and it might save them some money in the short as well as the long run.)

Get strong Juliana.

TTFN. (Ta Ta For Now)