Monday, November 06, 2006

msb-0078 I WON'T buckle...

msb-0078 I WON'T buckle...

Feedback come first so...

Okay, this isn't feed back... Its a gripe.

Today as I write this, is November 8th, 2006.

I just went down for the mail.

What did I find waiting for me there?

The "fall" issue of "MS Connection" for the New York City Chapter. Great!

They have events for October.

On October 15th, I just found out they are going to hold the "MS Bike Tour".

On October 23rd, they are holding the 29th MS Dinner of Champions.

On October 28th they are holding the 3rd Annual Manhattan Society Halloween Costume Ball.

They had information on finding out if your polling site is accessible.

Its friggin' November. Are is were already. There is nothing as useless as timely information that's delivered too late.


They also had a list of donations. But they didn't have mine.

$2.500 and I have to read about everybody else, from KPMG LLP to the Baton Rouge Area Foundation.... and my name is left off.

Okay KPMG LLP gave a lot more than I did, and thank you very much Kellogg Pete Marwick Group, but a whole lot of people who gave less than I did are on the list.

What? I don't exist!?!

But you took my money eagerly enough. I look at my AmEx statement and I friggin' well paid 'em: $2500.00.

Well, screw that.

Its bad enough that I have to find all my listeners, all you other MSers, the hard way, instead of getting to run an ad in their magazine.

This is in-friggin'-sulting.

I am livid.

I feel like they are pissing on me from left field.

"We've got the list and you dont; nyah, nyah, nih, nyah, nyah."

Yeah, Well fuck you the the horse you rode in on.

If you want to play it that way.

I'm man enough to take on both you and the horse. (I'm going to help Tim Henson with a donation right now.)

I'm am an MSer and I have our interests at heart. I am trying to provide a weekly channel for us to get the news in a timely fashion.

Not "after" the friggin' events...

They can even have their own shows and I can refer back to their shows on my podcast until it becomes dated and/or inaccurate... It won't even cost them anything.

I've already written more about people with MS in ten months than they have.

I have reached hundreds of people. I have reached nearly 3,800 downloaded shows. I am trying to make a difference. Fuck it all, I am making a difference. If you don't like it, though shit! I am a media presence.

I have proved my podcasting model, my delivery model, my advertising model. I have proved "everything".


Discovery! I am back to my prime motivator: Intimidation.

I am not "intimidatable".

I have faced some punks armed with a handgun and did exactly the right thing (I'm still alive aren't I?) while retaining what was not theirs to have (Only one of them was armed. [The trick is to let them think they are winning while retaining what really counts.])

The very attempt to intimidate me raises my hackles and gets me to strive further and harder; to achieve goals beyond what anyone thinks can be achieved.

I am many things because of MS, but I am not intimidated by it.

I am not intimidated by failure either.

Its the only way any of us gain experience. Oh we can learn in some dry way from books and from stories, but it doesn't mean as much as actually failing at something or failing at some part of it.

I could write volumes about my failures. (I have written several articles and even had a column for a while back in the nineties [back before some of you were born, I bet.])

Oh, they were not failures to anyone else but me, but everything I have ever done or seen done could teach volumes., and I am an eager student.

I am not intimidated by fear. As FDR said "The only thing we have to fear is fear itself."

I am not intimidated by the future. The small slice of that which I myself am exposed to is as much an opportunity as it is a challenge. The future yawns before us, open to anything.

I am not intimidated by MS. There is so much to learn, so much to explore, so many brave souls to meet. What MS represents is an opportunity to learn and people to know.

I am not intimidated by the Osamas out there. After all, I can only die once and, as sure as I was born, I will die. All they can do is affect the timing of my passage.

I am not intimidated by the absence of support on this podcasting venture, since every idea must eventually come to be recognized on its own merit.

Running my podcasts from my home means that I am doing this cheaply.

Having evolved a time independent and duration independent business model which gives any advertiser the time they need to elaborate on their product or service and hosting their media on my servers gives me a low cost, verifiable revenue stream.

They just have to realize it.

No, they have never seen the likes of me before.

In the mean time, I just have to reach my audience, the MSers of this world, with content and tunes.

And if I'm wrong. So be it. What can I learn from it?

I am undaunted. I am "not" giving up.

I'm going to reach you, all of you.

And we're going to turn demographics on its ear.

In the wider world, you may only be 0.0833% of the population but you're 100% of my audience.

That what counts. God damn it, you count, God damn it, we count.

We deserve a voice.


mdmhvonpa said...

Wow ... you really got it going today, eh!? Fear is the mind killer.

btw: did you get my last email?

Gandksmom said...

I was just diagnosed with MS and have been reading through blogs and came across yours. Sounds like you got totally screwed and I am sorry!

Miss Chris said...

I couldn't agree more. We DO matter. It's a shame we seem to be in it alone most of the time.

Charles-A. Rovira said...


yes I received your email. Your piece is going out as dated by you. 2006,11,10. :-0

I am trying out various "readers" (before I either buy one or just read your great Roundup [You just know I can practically hear the dogies rollin', Its just beggin' for a C+W backing. :-])

When I got home and found this piece trash in my mailbox, I was perplexed, (Fall issue, its November,) then I started to read it.

I went a cold kind of livid. They were late to the point of having missed the election, and my $2,500 donation was being utterly ignored and MSBPodcast, its business model, its advertising model and and its achievements, were just as utterly ignored.

I hate to bring it up but that's the kind of ignoring things that made Vesuvius famous. They ignored a situation until it was a pyroclastic flow.


Hello gandksmom,

don't feel sorry for me, (I've only had MS since 1967 and its only been a PITA since 1997. I didn't stop me from getting a freshly minted business degree from Metropolitan College of New York.)

They might have, uh, forgot, (yeah, lets be charitable and call it an omission,) forgot to mention the donation of $2,500 by however, I can make omissions of my own.

If you'd like to hear news from or about your chapter's events, why send me an email.

You or the chapter can send me an email and I can feature your event almost from the day you send me the email until the day of the event. (None of this crap about getting news concerning the election after the election.)


Yes Miss Chris,

we do matter. Enough not to suffer in silence.

Tell every one you hear of who's got MS about this podcast.

I'd rather fail because of my shows' content, than to be smothered by an officious silence.

Jaime said...

I like your outlook on death. So many people fear it and I think when we are faced with an illness it become more of a reality.

I would have to agree with Miss Chris. We have every right to be treated as anyone without this illness....this illness does not define who we are. This can be a very lonely time in one's life. Good thing all of us are here to support each other! :)

Charles-A. Rovira said...

Hello Jaime,

I think I've always had a sort of fatalistic point of view on life. (Death and dishonor.)

Maybe its part of being of Spanish descent.

The point of view therefore being the same as that of Francisco Goya painting "Saturn Devouring His Children," which was utterly ghastly. :-)

We have every right to expect nothing.

I can't help but being reminded of Goofy, welcoming guests to Disney World.

He once sang a stupid little ditty:"Oh, The World Owes Me a Living..."

No, it doesn't, Goofy. The world doesn't owe you squat.

And people should expect to be amply repaid in kind, not in kindness.

(Sorry but after yesterday's little surprise in my mailbox, I don't think much of my fellow human beings right now. Its obvious they don't think much of me. Actually
its obvious that they just don't think much.)

Like Alice Cooper sang along with Flo and Eddie in "Flush the Fashion" (Arrgh... I can hear the music but I just don't remember the name of the song. "We're all Clones" maybe? Maybe not? Got it! "I Wanna Be In The Headlines"): "Just don't spit on me..."

Jm said...

Wow Charles the fear section of the podcast was incredible, you shall be my yoda now... :)

Dissapointing that you don't get the support you deserve, don't give up, I think the podcasts are great! (and remember I'm from a different country so that's an international opinion lol)

Keep at it, I and I'm sure loads of others appreciate the work you do.