Nothin' like an old Joe Cocker song to send me tripping down memory lane.
He originally got the song from Paul Weller.
"Seems I've got to have a change of scene
'Cause every night I have the strangest dream
Imprisoned by the way things used to be
Left here on my own or so it seems
I've got to get out before I start to scream
'Cause someone's locked the door and took the key
You feeling alright?
I'm not feeling too good myself
Well boy, you sure took me for one big ride
And even now I sit and wonder why
An' then I think of you and I start to cry
But I just can't waste my time and must keep dry
Gotta stop believing in all your lies
'Cause there's too much to do before I die
Don't get too lost in all I say
Though at the time I really felt that way
But that was then and now it's today
Oh - can't get out feeling, so I'm here to stay
Til someone comes along to take my place
With a different name, just a different face
You feeling alright?
I'm not feeling too good myself"
Don't worry, I've got the lyrics in the blog (at http://multiplesclerosisblog.blogspot.com/ ) but I'm not going to sing along.
I've never had a singing voice.
It's not false modesty either.
I just don't have a singing voice.
Maybe that's why I became a good instrumentalist.
I couldn't fake it by humming along.
---- Tin Hearts
Anyway, feedback should come first, so...
I promised "Have myelin?" from Colorado, that I would do something on an iPod for her, despite her deafness, which you must admit pretty much defeats the purpose having an iPod.
(Well, it would if it wasn't for her cochlear implants. She has the "potential" for much better hearing than us "mere mortals".)
But it was an interesting gedanken experiment.
Firstly, it has to be a G5 or better iPod, otherwise an iPod is less useful to the hearing impared than the equivalent volume of chewing gum.
Secondly, the usage is completely wrong.
She will have to stop whatever she is doing in order to focus on the iPod instead of partitioning and multi-tasking and lettting the audio fall to the background while her eyes help her to navigate.
Thirdly, it would require the development of software (and the installation of said software) for her iPod.which would:
- enable the opening of a PDF file,
- viewing a PDF file, (with a slider, cursor mechanism,) with an 'auto advance' mechanism (sort of a karaoke machine but over an entire screen,)
- closing so as to terminate the PDF file viewer.
Then again, there is something kind of "yeech" about it regardless of how I attempt to compensate over a medium that's the wrong bandwidth.
Eyes take in so much more information than ears but they require so much more attention.
I was thinking of mis-using the m4a file format to accomplish this (complete with chapters) and having an accompanying audio track, which she would not hear, (well, that she wouldn't hear properly.)
Basically, I would have to abuse the format in the exact sensory obverse from Violet Blue's Open Source Sex. (Yes, there are those kinds of podcasts too.)
Instead, I've written to Apple with all the hints they need to do it so we' d be able to tie in a 'chapter' to a dictionary of text files (one per langage,) and get them to add subtitling (or closed captioning,) properly.
Eventually, the "frozen music" image will be the text and illustrations on "Ludwig Mies van der Rohe" from "The Oral History of Modern Architecture" ISBN: 0-8109-3669-0, while the audio will be my usual tomfoolery.
---- Clockwork Family
I've been blogging a lot more. The list of other bloggers on my site has been growing and I owe a by thank you to mdmhvonpa for providing an extentive list to start with. I am starting a whole series of wiki pages, one per MSer I encounter.
I heard some sad news today, Friday October 6th, 2006.
Mdmhvonpa sent word through his website http://www.mdmhvonpa.blogspot.com/ that a fellow MSer, mouse at http://insimpleterms.blogspot.com/ , has lost a spouse.
Its kind of a double tragedy when an MSer loses not only the love of their life but someone she could always depend on to help.
Leave her a message of condoleance and encouragement at:
http://www.blogger.com/comment.g?blogID=14194805&postID=115990211702568320
---- Twisted Family Ties
Medicare restrictions on mobility devices are scheduled to take effect November 15, 2006.
Yes, your elected officials just don't get it. That because it not representative. There are no handicapped people, no sick people, no disabled people in any part of our legislative bodies... This sucks...
Beginning Monday, October 2 through November 8, members of Congress will be in their home districts for the electoral recess. While your legislators are back at the fount, call or visit their local offices!
We've got to stop the Medicare policy that restricts device coverage and restricts mobility.
People with multiple sclerosis and other disabilities will lose mobility under a new Medicare power mobility device policy.
Coverage will be restricted to certain devices, limiting people with MS to lower-quality, poorly-performing mobility devices. And against their physicians' recommendations.
People with MS need mobility devices that meet their level of function and allow them the greatest possible quality of life. This is not be what you might be entitled to.
Basically, if you don't speak up, you're going to get shafted.
---- A Question of Family
I'm going to end this podast with the song "Reinstalling Windows" by Graham Holland. This is going out specially for Michelle, a cute biking MSer from Alaska who blog I've just read. (It http://icensnow.blogspot.com/ , is on the show notes folks.)
One of her earlier posts got me thinking about the stages of grief:
- DENIAL --- What's the first thing you do? You try to start it again! And again. You may check to make sure the radio, heater, lights, etc. are off and then..., try again.
- ANGER --- "%$@^##& car!", "I should have junked you years ago." Did you slam your hand on the steering wheel? I have. "I should just leave you out in the rain and let you rust."
- BARGAINING --- (realizing that you're going to be late for work)..., "Oh please car, if you will just start one more time I promise I'll buy you a brand new battery, get a tune up, new tires, belts and hoses, and keep you in perfect working condition.
- DEPRESSION --- "Oh God, what am I going to do. I'm going to be late for work. I give up. My job is at risk and I don't really care any more. What's the use".
- ACCEPTANCE --- "Ok. It's dead. Guess I had better call the Auto Club or find another way to work. Time to get on with my day; I'll deal with this later."
I guess I was on a fast track to acceptance since I went directly from denial to acceptance (Yeah, I walk with a cane now, shit!) but there is a big difference between acceptance and accomodation.
While I accept that I now have some limitations, I'm not laying down and weeping. I refuse to go gently into that long goodnight.
I will have to continually learn to work around my limitations to find some way of accomplishing my goals.
If way one doesn't work, I've got to come up with another, better way.
Economically, its simple supply and demand: because I've got a smaller supply of me I've got to be far more efficient in my use of me in order to accomplish my goals (Do I sound like a recent college graduate in business. That's because I am. :-)
In effect, I have to become a better much better capitalist than the average person because getting this disease has raised my ambitions while simultanously lowering my physical capital.
---- Reinstalling Windows
Posts
12 comments:
"There are no handicapped people, no sick people, no disabled people in any part of our legislative bodies... This sucks..."
Kinda makes you miss Dole, eh?
Oh, and thnx for the mention. Do you use hrefs?
I try to.
In my podcasts the links are 'live' (depending on your 'catcher of course) so the iTunes window should be able to launch your browser directly on the appropriate page.
I've also got everything in the show notes in the site.
I've also got everything in the show notes included with the 'lyrics' tag.
I can't do a whole lot more that that right now.
You guys are such "techies". Most of that made no sense to me whatsoever but, it's okay...I still dig you.
We people with M.S. could only hope to get the same respect some other diseases (which shall remain nameless) get.
Well Miss Chris,
the problem is one of attaining visibility with the right people (other MSers and people who can help them.)
It has happened before.
Fewer people actually ever got polio than got MS. It was a question of raising the veil of demographics.
While I'm sure lots of people got AIDS (sort of MS in reverse, if you think about it.)
There were a lot of dead fags before it ever got recognized for the blood-borne plague it is and sexual preferences has nothing to do with it.
But there are a lot more people dying of AIDS and, almost inevitably, some of those people were (or still are) famous.
We have to raise our own profile; to become vital to some sector of society with clout.
I figure Podcasting, with it power to change the advertising market place as thoroughly as Google changed web advertising is probably the right way for me to go.
I don't really want to become famous but I need to to achieve the kind of media visibility that is going to be required to change our lot from its current 0.0833% to something big.
If I did need fame, I could have done it with music (and on reflection, it might have been easier; to be the tragic figure who's soldier bravely on [puke.]) I didn't do it. I was too shy.
Or with object oriented programming. (I did achieve a certain level of notorioty amongst the computing cogni scenti; that and a quarter will buy you one local call at a phone booth. :-) I didn't do it. I was still too shy.
But podcasting is my way of making our lives better (and its not exactly altruism on my part. I said our lives and I meant it.)
And this time I'm getting over my shyness. (Ten years ago, I would never have been able to write this.)
On the internet, nobody knows you are painfully shy.
Hello mdmhvonpa,
its not quite painfully shy as almost psychopathically uninterested.
You're quite right though.
The end result of all of this mediating technology is that I can play at being bold and courageous.
On the inter-web thingy, nobody can tell you're a dog. :-)
Then again the power of media is to lie. It reduces things down to a single image (I guess photography was the first medium of reproduction.)
Everybody thought that Judy Garland was happy, Marilyn Monroe was dumb and Joan Crawford was sweet.
Our first MS variety Show! Going mainstream....
sending good chi,
Joel
The problem is that people are so uneducated about MS...a very sad thing considering how many people are touched by this illness. Now if one of the legislators family memebers were to be diagnosed and then forced to give up their insurance and income to go on social security and medicare/medicaid....they would be singing a different tune!
Problem is this will never happen. Even if someone in charge does happen to get sick...they have the resources to take care of themself and don't really know what the rest of us go through. Sure, it still sucks for them but it is not the same.
Hello Jaime (J' and aime are French for I love Its one of my favorite names :-)
You got that right in one.
The problem is that people are so uneducated about MS...
Not even us!
Of course it doesn't help that the symptoms don't really represent the actual disease.
"a very sad thing considering how many people are touched by this illness."
The tragedy of this disease (and since I have it, I might know what I am talking about,) is not that so few of us (0.0833% of the population) have it, (its a tragedy that anybody gets it at all,) but that none of us seems to have become rich enough and popular enough before exhibiting the symptoms.
But we can do something about that by using podcasting as a means to stand demographics on its ear and come up with something that is rightly ours.
The problems of the legislators and of the people administering insurance companies, social Security, Medicare/Medicaid and the host of services is that they are caught in a systemantic bind.
Their companies, services, admistrations or whatever, are based on doing one thing while the position of everybody in the companies, services, admistrations or whatever, is based on opposing that function.
The moneys and services disboursed is whatever trickles out after everybody has run out of excuses to say No! You can't have any of it.
The employees are set up to feel as failures if the system actually works as advertised.
I don't want to hear the legislators singing a different tune.
I want them to be singing our tune. :-)
Right on Charles! I couldn't agree more.
Hey Charles, I finally go to sit down and listen to the podcast, I love it! The music is great, makes me laugh. Thanks for dedicating "Reinstalling Windows" for me!
Hey Charles, I just got the chance to sit down and listen to your podcast! I love it! The music is great, made me laugh. Thanks for dedicating "Reinstalling Windows" for me! :)
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