msb-0276 Another Inconvenient Truth

msb-0276 Another Inconvenient Truth

intro

Disclaimer! Disclaimer! Disclaimer!

MSBPodcast is "not" any kind of a medical podcast.

It is by and for MSers.

Its purpose is to keep us entertained, to explain our symptoms, to remark on our discoveries, and to raise the general consciousness about our disease.

The path to illness is shadowy, murky and rough strewn.

The path to wellness is lit by the lamp of knowledge.

----

Feedback comes first, so...

I'm still going through the new stats package and I can safely report that the old shows are "stubborn" as hell (How? I mean what are people using to get to 'em? The episodes are gone from my web site altogether!?!)

Talk about episodes having a "long tail" ...

---- "One Way Ticket Back To The Truth" by: "Yellow Express" http://www.yellowexpress.nu/

Feed Forward comes next, so...

This is "your" segment.

Say "your" piece on this segment.

Share with other MSers whatever "you" want to share.

Drop me an email: "charles at MSBPodcast.com"

---- "Truth" by: "A Band Called Quinn" http://www.myspace.com/abandcalledquinn

Feed Me comes third, so...

Do you have a therapy, product, good or service that is of interest to MSers?

Consider advertising on this podcast.

Reminders on this segment only cost $0.03 per reminder per download of an episode. (A $30CPM targeted at MSers.)

It can/should lead to a full ad, in text, audio or video, which costs $3.00 per download.

That sounds expensive until you do the math and realize that if nobody downloads it it costs you nothing, unlike print, where you often can't even get an ad in to the specialized journals, or radio or TV where you'd just be wasting your money with the 0.0833% MSers rate of return. (That's about six times "below" the level of "statistical noise".)

But MSBPodcast is 100% in your market, and you only pay per download of your material.

No play, no pay.

Reach the MSers who would buy your therapy, product, good or service, with-out having to waste your advertising money on anyone who is "not" interested...

Send me an email at: "charles (at) MSBPodcast.com"

---- "Cobalt Truth" by: "Daniel Adam Johnson" http://www.rodaband.com/

"Thesis:"

Of all the ways I have heard Shauna described, (plucky, gutsy, ornery, funny,) I have never thought of her as anything other than a hard working person who just drew a "short straw"
in the universal lottery we call life.

---- "This Time I Want the Truth" by: "Jeff DeHerdt" http://www.jeffdeherdt.com/

"Synthesis:"

An Inconvenient truth

It is difficult to maintain optimism when reality can be so pessimistic for many. I've been referred to (though not directly)as Polyann-ish at times and I'm really not. I'm very lucky, as I have often said, with my MS, and life in general.

That being said, I have my dark depressing moments, too, so I can understand that point of view. But focusing on the bad can only bring more bad. It is a self fulfilling prophecy. Think bad things will happen to you and you're more attentive to them when they do.

There was a woman I went to university with who was one of the sweetest people I have ever met. She was kind, empathetic, funny, and always willing to help you with whatever was in her ability to do.

She also had the worst luck of anyone I have ever met. If something could go wrong for Liz, it did. She was working really hard to put herself through school (engineering no less) and in her second year of a 3 year program she became sick and ended up missing a lot of class time. As a result, she had to do a make-up year, so to speak. She buckled down to do just that, though financially it was difficult. Her parents had little extra money, so she was her only source for dollars.

At Christmas time in her third year, her father, a traveling salesman who was also deaf, was attacked in a hotel elevator, beaten with a pipe and left for dead. (I had met the man the year before when he was passing through town and came to dinner with Liz one night in the cafeteria of our residence. He was a small, quiet man, who nodded politely at everyone as we raised our voices so he could hear us. The police believe the animals who attacked him had probably approached him from behind,said something to him and not hearing them, he didn't respond.) He ended up in a coma for a short time before finally succumbing to his injuries. As far as I know, in the 20 some years since that happened no one was ever caught for that crime.

Liz came back to school again. A couple of months go by and Liz develops some sort of rash that a doctor diagnoses as scabies. She spends a couple of hundred dollars (that she can ill afford) on washing everything she owns and applying whatever ointment the doc prescribes and recovers. A month later it's back. She sees her regular doc (who had been away when the rash initially started) and is told it's not scabies, but some other eczema type illness that will get better on its own. And it did.

She was in my room one day when I received a call at the pay phone down the hall. I was out for a couple of minutes and left Liz in my room. When I returned, she said, "I fixed your candle for you. It was going to burn right over the edge". I had been given a candle that came with instructions on how to shape the edges so it would burn down in a specific pattern and I had been patiently shaping it for several hours. There was no way I could tell Liz that she shouldn't have done that. I just thanked her for her attention.

Liz eventually graduated with her engineering diploma and though I lost track of her for 20 years or so, I did learn she went on to get her degree and obtain employment as an engineer.

The entire time I knew Liz, even through the darkest days, she maintained a niceness about her, an empathy for any who were going through a rough patch, and an easy laugh and really cute giggle. We all saw her weep at the news of her father, but then buck up after that incident and carry on. We saw her frustration at the scabies incident, but again, we observed her carry on. She never once had the attitude of "poor me". She never once said, "Why me". Those of us who knew her all said those things for her, but never to her.

Liz did not ignore the truth of the crap she went through. When told she had scabies, she said she had visited relatives one weekend who had a farm so it was within the realm of possibilities for her to have picked up the little buggers.

When asked about her father's hospitalization and subsequent death, she told us she was angry and sad, but she said, I have to do what I can for my mother and little sister now, and that means finishing school. She fixed on the best possible outcome and strove for it.

Liz never focussed on the bad things that happened to her. She always had hope for whatever was going to happen.

And that is what I try to do as well (though I have a post bubbling at the surface as to how I seem to attract negative electronic events in my life) with my MS. People who hear me speak about MS at fund raisers or just one on one, know that I tell the inconvenient truth (sorry, Al) that while I look great today and appear to have all my physical and mental faculties, the disability of MS lurks in the background every day of my life.

A specific drug may be helping me to achieve what I accomplish, but so do the little (and big) naps and rests I frequently take. So does eating a relatively balanced diet and all the little treats I allow myself (good for the mental health). So does not beating myself up for perceived failures like a divorce or bad relationships, or for forgetting my shopping bags when I go to the grocery store. There are many things I do to maintain my current status. Is putting hope in the mix part of it? Yes, indeed, because I hope for a future without MS. It doesn't appear that it will be in my life time, but I strive for the future anyway.

Most of this post has been fueled by a recent posting of Lisa's on Brass and Ivory about PR campaigns for MS drugs. I have nothing against PR campaigns in general, or PR companies. I'm in the PR business myself.

What I want is "transparency".

When I speak to groups about my experiences I tell them who I am, who my employer is, and the good and bad of my experiences. It's the truth. And isn't that what we need?

---- "Pure Truth" by: "Still Nameless" http://www.stillweb.it/

"Conclusion:"

I too am trying to be as transparent about my MS, my motivation and my goals for this podcast.

Yes I'm trying to make a dollar bill from advertisers in the very limited sphere of MS products. (Why not? I've "got" it. Why not make it work for "us" instead of being ignored, whimpering in a corner.)

Yes, I happen to think that, as media shrinks from the huge expenses involved in the mass market arena (the world of the "Media Concentration" [ http://www.mediachannel.org/ownership/ ] where the "ClearChannel"s and the "Infinity Broadcasting"s rule the airwaves [that control being handed to them on a plate by the FCC,] ) and finds its way onto the internet and the web, where the FCC has no sway, and cheap is the law of the land, I have a customer relationship model which they might look at.

Yes, the media companies could use some humanization, some other way to see us, "as people!" (What a "novel idea".)

And this podcast has been doing that for over two years...

---- "Our Truth" by: "Lacuna Coil" http://www.centurymedia.com/us/single_artist.php?ID=31

Outro