Wednesday, April 16, 2008

msb-0288 Frustration

msb-0288 Frustration

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...

This is getting weird, really weird.

Where the dickens are people finding some of these episodes? I even took down the post.

Talk about some shows being evergreen...

I'm "still" getting downloads of episode "msb-0018 The Gift of Giving".

I'm at 288. That's 270 episodes ago.

That's really hurts. Why don't people move on?

Over a dozen downloads this month so far and we're barely halfway through.

I can't for the life of me figure out why? (Heck I can't for the life of me figure out "how?")

---- "Frustrated" by: "PPT" http://www.myspace.com/ppt3

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"

---- "Frustrated" by: "Blondsai" http://www.myspace.com/blondsai

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"

---- "Just One Night -Frustration Mix- Feat. Jeremy Carr and JWills" by: "Plurgid" http://andrew.hicox.com/

"Thesis:"

Its strange that we equate the ability to perceive information written down and shifted in time and space, in any media or language, or notation or subject, as the mark of intelligence, maturity and culture.

Then again, its what prevents and and all of us from being mere "will-o-the-whisp," to disssipate and fade away after we accomplish anything.

What is written remains, sometimes to haunt us...

---- "Release" by: "Aloud" http://www.allthingsaloud.com/

"Synthesis:"

Cute, isn't he? Lol.....I wish.

Before I started school, I begged my parents to teach me to read. They wouldn't. They taught me all the letters and numbers as required, but they wouldn't teach me to read. I was desperate to learn. The school of thought at that time, was not to teach your kids to read before they went to school as they would end up ahead of their peers and that would lead to grade skipping and that would lead to social problems etc. So I was told, "You'll learn to read when you start school". Of course I was eager to start.

My first day of school I was pretty excited. Today was the day I was going to learn to read. I came home after school very upset. I declared that I wasn't going back the next day. My mom asked why. "Because they didn't teach me how to read", was my reply. I was very annoyed.

It should not have been a surprise to my parents that I was so angry. After all, when trying to teach me how to tell time (at the age of 3), I could not be convinced that the part of the clock with the numbers on it was called the "face" of the clock. "That's not a face!!" And when they weren't looking, in my frustration, I took the clock apart, took the cardboard face off it, and tore it into little pieces. I can't imagine why my parents didn't have me in therapy fearing their darling little girl (and I was ) wasn't going to be a homicidal maniac.

Back to learning how to read. Somehow my mother convinced me to go back to school the next day. Of course I soaked it up like the little sponge I was. Pretty soon I had read all of the books in the class and was going to the school library by myself to get more. One day I found a shelf containing Babar the Elephant books. Wow! I had heard other kids talk about these books and the character so I was pretty excited. I took one off the shelf and opened it up. But I couldn't read it!! It wasn't printed in type like other books. The type was in script. Long hand!! I took the book to the librarian and asked her why the book was like that. She didn't really have an answer for me except to say that those books were for older students. "You mean they can read this?" I asked, incredulous that anyone could make out words in what appeared to be scribbling." What grade do I have to be in to read this?" I asked. "Grade 3 or 4"' she told me. I was beyond taking my frustration out on inanimate objects, so instead of tearing the book into little pieces, I carefully put it back where I got it and vowed to myself that even when I did learn how to read cursive writing I would NEVER read a Babar the Elephant book. Ever. How DARE they put a book in the library that I couldn't read. It wasn't that I wasn't allowed. But it had been deliberately set in a type that I wasn't going to be taught until 2 or 3 years later. Why would they want to put that type of a book in the library if half the student population couldn't read it? I didn't understand. It was like putting a bowl of candy in front of a child and saying they could have some in 2 or 3 years, but not before.

Fast forward to grade 10. After struggling with absolute idiots for classmates, with a few exceptions, for two years in junior high and daily verbal and mental abuse (and the occasional slap) from bullies at school, I was in high school with a select few classmates in Advanced Math, English, and History. Finally, I could get back to what I enjoyed about school-learning. And with other students who wanted to learn, rather than goof off. But I hit a brick wall in math for the first time in my life. For two months I laboured over that subject, just not getting it. I was frustrated. My parents were frustrated. My teacher, Mr. Lyne, was frustrated (more on him in another post as he was and still is one of the best teachers I ever had). And then one day at school, Mr. Lyne was at the front of the class, explaining something when suddenly the entire room lit up with the light bulb that turned on over my head. He stopped mid sentence when he saw the smoke coming out of my ears and my mouth twitching in anticipation of blurting out the rest of the explanation. I still remember him bending slightly at the waist towards me, encouraging me to speak, and the smile on his face getting wider and wider as I did. When I was done, he and the other students in class cheered. I was thrilled beyond belief. It was like I had just discovered a cure for cancer. I finally got it! I loved that feeling, and it propelled me to learn more to get that feeling over and over again.

Last year, the Wookie and I were talking about Quantum Physics. Really. Actually, the Wookie was trying to explain it to me, or at least one aspect of it. I was following pretty closely, I thought, but didn't reach the same conclusion as he did. We checked something out on the net, a demonstration that came out the way he said it would. "But it shouldn't do that!!" I exclaimed in my naive way of believing in the basic laws of physics as I understood them. "But it does", was his reply. "But it shouldn't!!" was my brilliant response. "That's just so wrong!!" I insisted, much like my friend Lana said when we went to see The Ring and the little you-know-who did you-know-what(I don't want to spoil the ending if you haven't seen the movie). There was a shaking of the earth as my understanding of the laws of physics was completely shattered. I am still frustrated with my apparent inability to understand quantum physics and time travel (I insist you can't time travel).

Over the years I have continued to read and learn and get frustrated. To this day, I have never read a Babar the Elephant book, even though they are now printed with regular type - I checked. But I have come to accept that there are things I will never come to understand. Like leg warmers as fashion. Like Quantum Physics. Or World Wars and genocides. Or multiple sclerosis. Believe me, for the past ten years I have been reading and studying and asking questions. Yes, "We're working on it" is getting pretty tiresome to hear, and yes, I'm getting really frustrated, like you probably. What do I do? Tear something up? Punch a hole in the wall? Refuse to participate in something? This is one situation over which I have little control. So I give over control to the doctors and scientists who are working on the problem. And I offer my body to be poked and prodded and scanned and my PR skills to raise awareness and money for the cause.

Next Monday I will be meeting with my neuro, Dr. Murray, and one of the clinic nurses, Judith, to review my MRIs from the study I've been in for 10 years. One of the questions I will be asking the good doctor is "Are you frustrated, too?"

S.

---- "Beautiful Release" by: "Love = Action" http://www.myspace.com/loveisaction

"Conclusion:"

What's written is often very frustrating too.

Specially when its written on a prescription pad.

But rather that than to let 'em get me down.

I'd rather "exunt" dancing (Trippin the light fantastic as I soft shoe around the bomb craters and land mines which life has placed in my path.)

---- "Release Me" by: "Groove Generator" http://www.itsaboutmusic.com/grge.html


Outro

5 comments:

Shauna said...

Charles,
In case your readers want to know, and don't read my blog, my neuro said yes, they are frustrated, too.

S.

Charles-A. Rovira said...

Its a very frustrating problem.

They're trying to solve a problem we didn't even know we had with tools that didn't exist last year.

The immune system is still mostly terra incognita and the tools of the trade are still being crafted and the skills still being defined as well as being honed.

If your neuro is in the least competent, I'd expect him to be frustrated. (Specialy with MS which is a disease of the immune system.)

(If he got into neurology because its fairly innocuous, he's not going to get emergency calls in the middle of anything because nothing is ever an emergency, he's not going to have to deal with messy bodily fluids, and he can look forward to years of uninterrupted boredom on a doctor's salary, [I know just such an irrelevant ass-hole,] than I wish him the same diseases that we're stuck with.)

pb said...

"Exuent dancing." I miss dancing.

Maybe in my next life...

Charles-A. Rovira said...

As do(did?) I.

I used to be a pretty good dancer.

Its easy to get good at something you love doing because doing the repetitions isn't a chore, its a pleasure.

(As far as waiting for the next life... Screw that. I stopped believing in reincarnation when I got decapitated during the tiff I had with Robespierre. :-)

Czes Kulvis said...

Being a MS-er (or former MS-er), I experienced all sorts of problems - including psychological. Definitely, frustration is one of major issues.

I created my web-site, trying to help other MS-ers to cope with their big problem. This information can be found on pages of my web site kulvis.com

To health and wellness -

Dr. Czes Kulvis