Part Two of Wheelchair Kamikaze's presentation is up

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Part Two of Wheelchair Kamikaze's presentation is up

Postby Cece » Thu Jul 21, 2011 7:20 am

www.wheelchairkamikaze.com/

Part 2 of Marc's presentation from the AAC symposium Patient Day is now up. Check it out....

Not nearly as worthy but perhaps of interest is that we had our very own naysayer among us at the symposium. He's posted in the comments of Marc's part one as anonymous.
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Postby zinamaria » Thu Jul 21, 2011 9:05 pm

Thanks for posting this here Cece.

Once again I am stunned to silence by Marc's photographs...exquisite, poignant, important, sensitive and so alive.
And then on top of it he is relating his life, our lives to these photographs, so refreshing to see an artist at work, despite the what he lives with daily. What a spirit.
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Postby HappyPoet » Fri Jul 22, 2011 5:32 pm

Cece, thanks for posting Marc's blog updates for everyone! :)

Zina, I'm so happy to see your post. :) Marc's photographs are awesome when seen projected on large screens like they were at the symposium.

Marc, you're a genius -- you see and capture so many elements in your photography... subject, light, perspective, movement, color, line, mood, contrast, patterns, and more. You deserve a one-man show -- how about during the Patient Education Day next year? :D
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Postby Cece » Fri Jul 22, 2011 5:43 pm

If Dr. Sclafani lets me help out again next year, I would definitely say Marc's presentation is among the things that really worked this year.
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Postby zinamaria » Fri Jul 22, 2011 9:26 pm

Happy Poet, ditto, ditto!!
Frankly, I would like to see Marc's one man show at a stellar gallery in NY city.

I know we're slightly off topic here, but because everything is related in some way, I must say there is a great community of artists in this MS/CCSVI community, and this is very encouraging for those of us who wonder how to keep making art when we feel like -----sometimes, and yet here we are, poets, painters, musicians, writers, photographers, filmmakers, and so on, doing it and doing it despite our difficulties and challenges.

We, those of us with MS/CCSVI, struggle daily, and yet there is art, the concrete example of the harmony that is possible, the resolution of duality and tensions that makes a work of art unified and harmonious and takes our breath away...it is this wholeness in each work of art, I feel, that for a moment helps us to live, like sitting near a river or in front of a tree, where duality is harmonized into wholeness and tensions do not reign.

Okay, over and out and to bed before I get carried away with beauty.
Just wanted to raise us up and make us all smile.
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Postby marcstck » Sat Jul 23, 2011 7:06 pm

Wow, thanks for all of the overly generous words, everybody! Sorry I'm just getting to this now, this was my IVIG infusion a week (five hour infusions on Wednesday and Friday), and as usual it's left me knackered…

I'm really happy my presentation went over as well as it did, I was very nervous about it. None of my photos was taken with MS or CCSVI in mind, and I kind of agonized over how to link them together for several weeks before the symposium. In the end, putting the presentation together turned out to be a little bit easier than I was anticipating, probably because I had rolled it around in my noggin for so long. Still, I really wasn't sure how successful I'd been at pulling it all together. My mouth was bone dry as I read through the presentation, up there on the stage.

I'll be posting part three tomorrow night, and then part four on Wednesday night. I'm also going to make a little video of the pictures with me reading the presentation as a voiceover, so people will be able to see how it (hopefully) fits together.

Thanks again for all the kind words.

Oh, and as for the naysayer, wouldn't it have been better for them to have brought up their points of contention at the symposium, during the Q & A session? I'm sure that they might have been able to add something interesting, as most of the people there were firmly in the "believer" camp. Nothing like hiding behind the anonymity of the Internet, I guess…

Edited to add: nice picture, Cece!
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Postby bestadmom » Sat Jul 23, 2011 7:37 pm

Zinamaria,

I thought the same about our community of artists. I made a list after the symposium because it's so powerful.

At Dr. S's symposium we had Carol Schumacher and Janet Grieco who both work with glass, in different ways. Denise Graff is a photographer whe digitally manipulates her nature photos. There was Marc, who has a unique knack for creating beautiful visuals and touching us deeply with his words, Jason with his films, Dr. S is a great photographer too, Audrey (fiddle a liddle) is a graphic designer who does great t-shirts, Cece is a published author, and Happy Poet is a great writer. I bet there are others that I don't know.

Then there's Joan and Jeff Beal, composer/musicians. Andrea Wulkan draws and paints. Sandra Forbes is a graphic designer.

Next year we need to have a ccsvi gallery. Or maybe we shouldn't wait a year, and harness the talent sooner. Our community has much to share; an awesome group.
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Postby zinamaria » Sat Jul 23, 2011 8:21 pm

Bestadmom,

I agree! why wait? Perhaps we could harness all this creativity into some kind of showcase...Johnson (not Johnson) is also a painter and a writer. I am a painter and a writer, having published poetry and photography as well, and exhibited my paintings in Italy and of course here in the states.

Marc, what makes your photographs so powerful is that you do not take them with any 'intention' and that you relate them later to your and our struggle is what then makes them your artistic endeavor, is what I think. Your instincts are spot on and are soulful. Putting words to the images, again, makes all of it your 'art'. Thank you for this gift.

Z
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Postby zinamaria » Sat Jul 23, 2011 8:25 pm

Oh, great pic Cece!! It is kinda fun to see the faces to these anonymous names, you guys are brave!

And look forward to your next presentation Marc.
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Postby newlywed4ever » Sat Jul 23, 2011 8:27 pm

Great idea, bestadmom & zinamarie. Maybe a gallery of works...silent auction...fund raiser...
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Postby zinamaria » Sat Jul 23, 2011 8:32 pm

Yes! Yes!
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Postby zinamaria » Sat Jul 23, 2011 8:34 pm

Man, I'm so excited over the possibilities I keep forgetting things! Bluesky is also a writer!
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Postby bestadmom » Sat Jul 23, 2011 8:58 pm

I was thinking silent auction too but getting agreement on the group
to be the beneficiary will be tricky. The groups actively fundraising and have processes in place to fund research are Annette Funicello's foundation, Montel's foundation, BNAC, Dr Siskin, and probably others. I believe Dr Dakes study is fully funded. Bnac holds fundraising parties and will have one in NYC in the fall.

There's lots to think about and lots to do. How should we kick this off? We should work thru pm's and emails to set up a group so we don't hijack this thread.
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Postby HappyPoet » Sun Jul 24, 2011 1:05 am

I'm in!
I'm in!

Michelle, how about a new thread dedicated to the idea?

Along with using PMs and email, we could also use Skype (free long-distance video chat).

:D
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Postby bestadmom » Sun Jul 24, 2011 6:15 am

Pam,

Yes, a new thread is good and once we have a structure and organize who does what we should put it on Facebook. Ill start a thread when I turn in the computer. On my phone right now.
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