Thursday, March 23, 2006

msb-0009 Feelthee Peekchures Monsieur?

Any listener feedback goes first so let me hear from you.

I know you're out there listening. I hit 160+ downloads on msb-0007 and msb-0008's stats are looking real good so far (I'm starting to write this a couple of days after releasing it.) I'll get back to this in the third half of the podcast.

Send me an email: and you can call me what ever you want. is wonderful that way. I don't know who you are but I know you're out there.

I am not alone and that is a strangely powerful thing.


Rachel Knight has just told about the MSYes Project; those are some videos on MS by MS'ers that you should definitely check out.

You can find it at Go check it out.

I can tell you that its some innovative work by MS'ers. VideoPodcasting is gowing in popularity on both sides of the pond.

I'm almost finished the book review for her. This is a good read. I'm more than a little awed. I'm studying the New York Times Review of Books as a template of sorts, so I do justice to the book.

I'm still working on the interview with Kaye Brewster (aka Polopop) and we're emailing across the pond, getting the interview into shape. Its hard to do the first time. We're sort of trying things out.

I'm still working on getting an interview with Ms Monaco of the LasciviousBiddies. I suspect its not going to happen quite yet.


The logo font contest is still on, but tempus fugit folks.

C'mon folks. $50.00 in iTunes for finding a 'broken' caps font for me.

You can go back, download and play msb-0006 and msb-0007 for the details. (Ain't podcasting grand? :-)

Worse come to worst, I'll make up something that I sort of remember. But I'd rather use the real thing.


I have the same request this week as last week.

Could you get yourselves on my Frapper map?

Its just down on the left hand side of the page.

Just above that, you can Subscribe with iTunes.

Just above that, you can Email Me.

Just above that, you can fill out my simple little Audience survey.

And some comments (on the right-hand side) on the episode you liked, or didn't like, would help me guide my future episodes to reflect what you want.


Now for the second half of this week's podcast.

The theme this week is smut; feelthee peekchures Monsieur?; prurient artifacts; "I'll know it when I see it" 'community standards violating' stuff.

What does this have to do with MS?

MS affects adults, or at least very late adolescents, and it hits them right at their core: the scaffolding of their inputs, the sensory nerves, and their outputs, the volutional nerves.

By eating away at the myelin that shields the nerves, our wacked out immune system can ultimately mess with our sex lives on both ends of the neurological spectrum, incoming and outgoing.

Now, I know that this is a subject that Americans shy away from.

Good thing that I'm a Québecois. We suffer no such embarassment or reticence.

There are historic reasons for this.

From the loss of La Nouvelle France by Montcalm to Wolfe on the Plains of Abraham in 1759 until the Revolution Tranquille of 1960, Québecois had little to do but enjoy their very limited incomes, and therefore play with themselves ... but not, by themselves.

Québecois were shut out of the economic life that was happening all around them and condemned to poverty and servitude.

Like the old joke goes: "If you didn't wake up with a hard-on Christmass morning, you had nothing to play with all day." And play we did.

Which is why we won "La Guerre Des Bercaux," (The War of the Cradle.)

By 1960 Québecois were rejecting the shakles both of the Catholic Church, which kept women enslaved to their uteri, involuntary conscripts in the war of the cradle, and of the state, imposed by "Les Vendus," (The Sell Outs,) the last of which was the extremely corrupt administration of 'Maurice Duplessis."

All right... There we were, an extremely liberal, unashamed, unabashed, unafraid people. And we rocked.

We'd just finished with 300 years of bull-shit and we weren't about to dig back under the blankets for anybody.

Screw tradition and screw institutions, including marriage. We don't need it.

Okay, what does this have to do with MS?

I have definitely noticed a reticence in the Anglo world to speak of what's between everybody's legs. And of what its attached to, a nervous system.

(I'm reminded of a story by Kurt Vonnegut "Welcome to the Monkey House", or was it something by Harlan Ellison, on "Ethical Birth Control" which desensitized people until you could kick them in the crotch while they were singing the national anthem and they wouldn't miss a beat.)

Anglos are very disfunctional. What kind of mind set can come up with hipocritical thinking like "Everybody does it, but we can't mention it, ever, to anybody!"

I spend at least a third of my life lying on my back or my sides in bed. Bet your ass I didn't stint on buying a mattress. Now I may spend the time but its not all spent sleeping. (And given the fact that there's now about 298 million Americans alive now, I don't think I'm alone in this.)

So what's with this reticence to talk about sex? The "adult conspiracy"?

All right... MS screws with the sensory pathways. Often sensations aren't the right intensity or the right location to perceive pleasure (and this can change drastically, dramatically, during an exacerbation) and the volitional structures don't cooperate in getting your body to do what you want.

On the perception side, sometimes your eyes don't see right, sometimes your ears don't hear right, sometimes you don't taste right or smell right (and smell is extremely important, we'll return to this in a second,) and sometimes it just doesn't feel right.

Partners are going to have to recognize this when they 'play.' What felt okay yesterday may not feel okay today. Hell! It may not feel like anything today. Pieces of your myelin are being abraided away by environmental factors as well being eaten by your over-eager and whacked-out immune system. (I've felt some weeks like I'd taken 'ethical birth control' and other weeks I was so sensitive that even the finest 400 thread-count sheets felt like coarse sandpaper.)

You have to talk. You have to communicate.

And this is the crucial third of your life. The third spent lying down. You can't be shy. You can't be demure. You can't just hope it will all be okay. Its your happiness. Its your parner's happiness. Don't blow it because you're tongue-tied, either of you.

All right: Smell is extremely important.

I picked both my wives because of their odor. They just smelt right to me and I must have
smelt right to them.

And don't think that my getting married twice is in any way suspect. I had twenty plus wonderful years with Claudette and life changed and we changed and now I'm living in another country with Lee. I changed, if I hadn't I wouldn't have, uh, changed.

Well, my life might have changed for other reasons but it doesn't take away from the twenty or so years I enjoyed with Claudette. Any more than it takes away from the time I have enjoyed so far with Lee.

Back to smells.

We have an expression in French "J'peu pas l'blairer!" I can't stand his/her stink.

Smell is a perception and with MS you have to be leery of any perception and of any change in perception. Perception, what you think about what you sensed, comes third, after sensation, what you thought you felt, and after reception, what your body felt.

With MS any of these steps in the chain becomes suspect. What is real may not be what you receive, what you sense or what you perceive.

That's why its so important to talk; to communicate. It opens up a sentient channel to discuss what you're perceiving, what you're sensing and what you're receiving.

Notice at no point have I talked about what you're feeling. Feelings are subjective and I make a conscious disconnect between the subjective and the objective.

I hope that this steers people towards discussion of what is real in their lives.


Now were in the third half and I need some information on fatigue.

I've never experienced it myself, or at least I don't think so. I get tired after doing some things but I've never had to take a nap of felt like "je m'en retournais chez nous avec mon trou d'cul end'sou d'u bras" (I was dragging home with my ass-hole tucked under my arm.)

Like I said a few weeks back, I experience a lot of noise on the line and it really interferes with the signals (both incoming and outgoing) but I have been spared most of the other cognitive side effect of MS.

I need some feed-back on what the symptoms are. And I don't what a dry retelling of the pamphlets and drug company hand-outs. They have all sorts of issues to deal with and can't really tell me the truth.

How tired does MS make you?

Let me know. Send me an email to

I'll let you know what people tell me.


Now onto the fourth half.

I think that people are a little put off by how little MS content is actually on this site. I mean, apart from my own travails with the disease, its tended to be "touchy-feely" "good gosh, aren't I brave" BS to be tying myself to a weekly production schedule and doing this inspite of sounding the way I do.

That is shortly about to change.

In the second quarter of 2006, starting next week, I'm going to launch this site for real.

I'm finishing the seventh semester of my Bachelor's Degree at MCNY (Metropolitan College of New York,) and I'm using this as a case study for my business and for my media studies.

Its not that mass media are dead, or even ailing, it just that there is a new kid in town: podcasting.

It breaks all of the old "volumetric" rules.

Instead of advertising to only .0833% of the general population, and were they really watching right then and really receptive to the message at that time, this podcast's subscribers are 100% interested in MS and they have the luxury of getting it anywhere, anytime and listening or watching it anywhere, anytime when they're bound to be receptive and can even rewind parts of the podcast to make sure they got the information.

I'll be pitching the podcast to MS drug companies, MS services providers and MS organizations which, up 'til now, have hade no recourse when trying to get the word out about what they do and/or what they produce.

That should provide the podcast with ad revenue to use to find and fund content.

I'll be supporting MS activities and events in the New York area and, later, on a wider basis.

I'll be looking for opportunities to produce or run ads for the major drug companies and service providers.

I could run these ads as part of my show (up to 8 because I don't thing a show can bear more than that, nor can the audience.)

I could also run these as 'special releases' which would allow them to be as stand alone content. This would be like features on Avonex, Rebif, Copaxone, whatever.

These ads can be audio or video, for the iPod screen or HD TV.

I have about 80 people to reach for now.

What I'm concerned with is the editorial budget, what mix of content to ads, to run.

I'm currently thinking about 8 ads in an hour long show sounds about right. There can also be 'specials' featuring all about a particular drug or treatment or aid or service. I like this approach because we wouldn't 'kill' a show with ads.

Also my wife has offered to "tag team" on voice with me, (but I don't think that would work. She doesn't cut me any slack. ;-)

Or she has offered to stand in for my voice if it ever fails during an exacerbation, or if I get a bad cold like I did earlier this year.

Or I could eventually hire somebody to 'speak' for us the MSers. And then we have to think of what kind of voice to use...

Email me at to tell me what you think.

To be honest, I've been nattering on to anybody and everybody about this, including some people whose judgement I really trust and respect, turning some of them onto podcasting, and the concensus is that its a sound concept.

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