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Video completed. I’d give it a B-

February 1, 2012

The little video was actually completed, which was a surprise considering how late and actually unprepared I was. I was rushing about, looking everywhere in the house where I store stationery goods, looking for a wide-nib magic marker at 9 pm  (I intended to make hand-lettered signs with the addresses of the CPS Alliance and the google address of the video.) All the ones I found – exactly where I thought they would be – were all dried out  I simply was not prepared – and I should have been. “Oh yes,”  I thought, “One more area of my life that was so well organized before the stroke … maybe I should organize the drawer again.” “In your dream,” said my CPSing self. “You have so many things to do, and not enough energy or desire to do them. Just give all this stuff away.” So many areas of my life need organziation … in the future.

My procrastination about this project, while I wondered how to best present it, produced pressure that made me work very hard, and very concertedly, for two days after I came up with a solid idea. Now I feel used up, but cannot sleep. Why did I wait so long? It might be because I had hemmed and hawed on the idea of making a video at all? For weeks after Mary mentioned it to the CPSA,  I couldn’t think of one. Finally. late last week I hit on the idea of just talking to the camera. I worked on the script for several days, until it got to be a solid ten pages. However, when Jake and I timed it this afternoon, it turned out to be more than twice as long as was  allowed for the video length.The submitted film could not be more than 5 minutes in length; the script was about 11.

So I had to give the writing more than a haircut; I did a few limb amputations as well, just as a good medieval barber could.  Editimg, re-timing, then more editing and re-timing – all took additional hours. Then I finally realized I would have to cut out whole paragraphs and important points – it felt as if I were failing the team by not getting all the facts in. But cut away I did. We timed it; it was just under 5 minutes. Then I lost another 30 minutes, while Jack printed out the addresses that I’d asked him to hand-letter for me. “It looks much better this way,” he said. Yes, I thought, but I’d rather have hand-lettered signs on time, than printed ones that make me miss the deadline. But finally, they were done – 11:15 PM. We filmed my little speech on the little Kodakc183 that Jack had given me for Christmas. The finished piece came in at 4:54. Then we lost more time searching for the cord that connects the camera to a computer, But finally, it was located. Jake had to help me transfer the video to the computer…. 20 impatiently-endured minutes.

I was relatively proud that I had actually accomplished something. I had said I would do something, and had done it, in spite of all the difficulties and stress and really bad pain that I was feeling at that point. Usually, CPS has the effect on me that exercise had on Robert M. Hutchins:: it makes me want to lie down until the felling passes. This demand for rest and sleep, the increased fire that you feel upon exertion, has meant that all too often, I do not complete tasks I set for myself. (Waking up at 7:30 AM to ride the recumbent bike and stretch is still only an intention.) The fact that I fail to carry my own intentions almost continually is extremely depressing. The fact that I had actually finished the video, as mediocre as I though it, gave me a little psychological self-congratulations.

But there was no time for patting oneself on the back. The video had to be uploaded to YouTube by 11:59 PM.

By the time I began to upload it, I was tired, extremely sore, and way past hungry, having had no dinner.So I screwed up certain things. Somehow, I entered the video under the account “ceMtralpainsyndrome,” instead of “ceNtralpainsyndrome,” Then it turned out that downloading a video onto YouTube from my machine is much slower than I’d anticipated. I hadn’t ever posted videos onto YouTube before, so was unfamiliar with the interface. It took 17 minutes longer to download it than allowed by the contest rules, which were very specific (“January 31, 11:59 PM EST.) I started the upload at 11:45 – and their little counter told me it would take 25 minutes to transfer. I was screwed, and it was my own fault for not being prepared.

I thus believe my submission will be disqualified. However, I added all the identifying phrases and keywords, so perhaps people googling for videos related to the 2012 Neuro Film Fest will still see it.

It’s not professional at all: just a woman at a dining room table, reading, What is most striking to me is how much like my mother I both look and speak. I look *old.* I look tired. In the first take we did, I tried to be emphatic and firm when I spoke. I just came off looking pissed at everyone and everything, full of anger. The second one – the one that is online – I tried to look at the camera and smile. I must look like some kind of lunatic, because I am smiling while talking about horrible things.The other thing I noticed was how much I use my hands – and how badly the left one shakes. I’d gotten used to to my hand tremor, except when carrying things. But actually seeing it makes it seem much more pronounced. Actually, seeing myself made me realize the most prosaic thing of all … how old I’d gotten, in comparison to the way I see myself.

But this isn’t about me, as much as I get sidetracked by looking competent or perfecting my delivery.. It’s about the message.  There’s a responsibility of carrying it properly. There’s the responsibility of staying alive even if it’s sometimes agony. It’s about telling more of the world about CPS.

5 Comments leave one →
  1. February 1, 2012 1:43 PM

    Thanks so much for making this video, Louise. It made me hopeful, made me cry, and inspired me to make my own video when I am well enough to do so.

    • February 1, 2012 2:17 PM

      Did it really make you *cry*? that is the highest compliment any artists can get, as you yourself know. I haven’t been able to watch this version, because I kept trying to remember to smile. I took an “emphatic and serious” attitude with the first take, and I look as furious as a disturbed hornet, like I hate everyone involved in the whole sorry situation about CPS. It’s certainly not an attractive look, and I thought it might simply alienate viewers.

      Maybe I’ll let my emphatically-pissed-off side out someday – like, say, at a Congressional hearing asking for research funds.

  2. February 1, 2012 3:37 PM

    BRAVO LOUISE!!!! GREAT WORK! I have also been trying to put together a short presentation/letter/video to send out to any appropriate groups, organizations, doctors, etc.
    As you know, it’s an exhausting endeavor for any CPS-er to accomplish.
    Anyway-GREATJOB expressing the grim details of life with this crappy syndrome.
    You are an inspiration!

    • February 4, 2012 12:44 AM

      Let me know if I can do anything to help. How long is the presentation/letter supposed to be? Perhaps we can work together to get this done.

  3. Alison Martin permalink
    March 31, 2012 1:56 PM

    Thanks Louise – the video was great and conveyed so much. We have shared it with our family, who agree that it describes so well what central pain sufferers go through. It is so difficult to explain to others what is involved and you did a wonderful job! (It’s nice to know what you look like too – we feel as if we know you better!). Very best wishes from Peter & Alison in England.

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