Sunday, June 29, 2014

Me, In Front Of The Camera (Yikes!)

(For those receiving this via email, this post contains a video which can be viewed at the Wheelchair Kamikaze website – click here)

As is evidenced by the Wheelchair Kamikaze videos and photos that are part of this blog, I’m very comfortable behind a camera. In front of a camera, though, not so much. This might seem strange given the fact that I don’t have much of a problem “revealing” myself through my writing, and I’m not exactly a shrinking violet, but I usually react like I just got too close to the tail end of a flatulent moose when viewing images of myself or hearing recordings of my voice. Many so-called primitive cultures believe that capturing a person’s image or voice steals a bit of their soul, and on the off chance that they’re right I’d much rather be the thief than the thieved. You can never have enough soul whether you're talking about things mystical or musical, and anyone who knows me can tell you that I just can’t get enough of that funky stuff. Holla!

Be that as it may, last summer I was contacted by a producer from the website EverydayHealth.com (click here), who wanted to know if he could put together a video for the site featuring me and my blog. As an added incentive, I was told that I’d be interviewed on camera by none other than Dr. Sanjay Gupta, a famous doctor and television personality who makes numerous appearances on CNN, CBS, and other media outlets. Dr. Gupta is also a practicing neurosurgeon, which further piqued the interest of this “atypical” MS patient. Additionally, I was told that Everyday Health wanted the video to include my lovely wife Karen, who deserves as much praise and credit as can possibly be heaped upon her. So, given this ever enticing witch’s brew of enticements, how could I say no?

Shooting the video took two days, or eight months, depending on how you look at it. Late last August – on my birthday, as luck would have it – Karen and I met Dr. Gupta and his video crew in lower Manhattan near Wall Street, where the good Doctor interviewed me as we walked/rolled along the city streets, talking about what it's like to use a power wheelchair in the crowded metropolis. Since time was short, we made plans to finish the video sometime in the next few weeks. My big fat rat bastard of a disease then reared its ugly head when I had a bizarre and totally unexpected reaction to a medication called Acthar Gel, which had me laid up in bed until the end of November (click here). By that time winter had set in and we decided to put off finishing the video until better weather arrived in the spring. Shooting was finally completed in May, and Everyday Health posted the edited video and a much too kind accompanying article on their Internet site a few weeks ago (click here).

Despite the fact that I may have lost a few bits of soul to the production, I think the Everyday Health crew did an exceptional job on the video and the written piece that goes along with it, the combination of which had me blushing for days. I’d like to give my heartfelt thanks to Dr. Sanjay Gupta, producer/writer Nils Kongshaug, and videographer/editor Michael Bush for doing such a bang up job on the entire production. Truly, I am not worthy (but Karen is)…

And so – drumroll, please – here’s Everyday Health’s Wheelchair Kamikaze video…


40 comments:

  1. Wow! Cool stuff! I've only seen you in one other video. You were(I believe) being interviewed by a bunch of doctors. Even cooler that Dr. Sanjay Gupta interviewed you! It was nice to finally get to see who this Karen person is :) She truly is an awesome person as is my wife for being there through thick and thin and falling, lots of falling, lol! Anyhoo, thanks for sharing with all of us. Cheers! Dave

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    1. Hey Dave, I think the only video I've ever posted of myself was me being interviewed on a Canadian news show about CCSVI. I'm honestly not crazy about being in front of the camera, despite my delusions of grandeur…

      Karen is awesome, as is your wife and all the other spouses/caregivers out there who stick with us through our ups and downs. They are the real heroes…

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  2. Carol SchumacherJune 30, 2014 at 2:29 AM

    Wow indeed....captured the most important bit..... Well done!

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    1. I tried my best to minimize the bits of soul the cameraman was stealing, so hopefully the damage done was small…

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  3. Marc and Karen, thanks for sharing. Marc if I had to paint a pitcire of a 'typical' New York er (downstate of course) you would pop in my mind well along with woody Allen. As usual, thanks for the blog.

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    1. Thanks, Tom. At one point I would have considered the Woody Allen comparison a huge compliment, but given some of the revelations about his personal life, now I'm not so sure. Still, I do adore so many of his films, and I've always thought you have to separate the artist from the artist, many of whom lead lives that are less than, um, exemplary.

      You're very welcome regarding the blog, and thank you for contributing to it…

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  4. Two thumbs up! And, camera shy as you are, it is very nice to put a face to the blog that I read, religiously (and to see the Amazing Karen, also!) :)

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    1. Thanks for the good review. As you can tell by comparing the face on my profile picture to the face on the video, the face of this blog has gotten a bit chunkier these past few years, but I guess that's what sitting in a wheelchair will do for you. Operating the wheelchair joystick just doesn't burn that many calories… Grumble…

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  5. @tim_wasabi says: Great piece by @drsanjaygupta on my old KRC colleague on living in NYC w/MS: think Woody Allen in a wheelchair.

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    1. Hey! My long-lost friend Tim, showing up through the wonders of the Internet! It's been way too long, you must send me an email so that we can reminisce about all of our old phone bank shenanigans! And boy, there were plenty of them… WheelchairKamikaze@Gmail.com

      Hope all has been great with you these past 25 years or so. Would love to get back in touch…

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  6. I'm not getting the WA thing but I do love a New York accent!
    Yay for the wonderful Karen too, and by the way.....she is really beautiful!

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    1. If you think I have a New York accent now, you should've heard me back when I was a teenager, before I cleaned up my act of it. I sounded like one of the Bowery Boys. Honestly, when I first arrived in Boston to go to school the locals could barely understand a word I was saying…

      As for Karen, she is truly lovely inside and out… Thanks so much for your kind words…

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  7. Loved the video Marc. Loved "meeting" Karen...finally. The woman is a saint, and beautiful, too. Video left me wanting more, much more. What's next? Perhaps a full-length movie? You definitely have enough material. I look forward to it!
    Roberta

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    1. Yes, Karen is all that and more. As for the full-length movie, not sure I could take that. This little video created enough neurotic hullabaloo, a full-length movie would surely push me completely over the edge… Think I'm better off sticking to the written word….

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  9. This is one of those surreal moments when you feel like you know someone and then really see them for the first time. You look good, and happy! (although I know that comes and goes; I have PPMS, too.) Karen is lovely.

    How did Dr. Gupta find you? Was it somehow related to his covering Jason DaSilva's film?

    -Steve S.

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    1. Hey Steve, Dr. Gupta does a lot of work with the Everyday Health people, so that's how we connected. I guess the Everyday Health folks caught wind of my blog, and the rest, as they say, is history.

      BTW, Dr. Gupta is a really nice guy. Very friendly, really put me at ease…

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  10. Great profile but too short! Need more of this. Get to work Marc! Hugs.

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    1. Ack! If my profile got any bigger you'd need a large screen monitor! Oh, you mean the video profile… Glad you liked it, but I've got to be careful about the whole "soul stealing" thing.

      Thanks for the kudos, much appreciated…

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  11. I .loved the music at the beginning. I sounded like you were blowing a musical raspberry at MS. I loved the whole thing...

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    1. I think the music may have come from one of my Wheelchair Kamikaze videos, not sure. I do love the idea of blowing a raspberry at MS, though. It's like giving the disease the old Bronx cheer, and I was actually born in the Bronx!

      Glad you enjoyed the video, thanks for leaving a comment…

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  12. Enjoyed "meeting" you and Karen while you were doing what you love: making a film and sharing insights. Always applauding your creative, tenacious spirit from afar ...

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    1. Thanks so much, IMO the best thing about the video is its message about not letting fears or anxieties about using assistive devices get in the way of living as full a life as possible. I wish I hadn't been so "proud", and had agreed to get a chair earlier than I did. My life had pretty much shrunk to the size of my apartment, but once I got the chair I felt like the world was my oyster…

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  13. Congratulations on the video, Marc!

    It was wonderful to virtually meet you and Karen. Enjoyed hearing your voice for the first time. :)

    Best wishes,
    Manju

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  14. Hello Marc & Karen! I felt like I was in New York! That's close enough to Chicago. It felt good being with you - kinda in person as opposed to emails. On July 5th I'll be doing UT one month. I started rereading "Your Own Perfect Medicine" by Martha Christy. That's an encouraging book. Talk to you!

    Lynn
    Israel

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    1. Hi Lynn, I've actually never been to Chicago (except for the airport), but I've always wanted to visit. I've also always wanted to visit Israel. It's heartbreaking to see so much turmoil and tragedy there this week, certainly hoping that cooler heads prevail and that peace will win the day sooner rather than later.

      Good luck with your attempts at healing yourself, and thanks for passing along all of the information. L'chaim!

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  15. Nice work brother! Getting the other side of the viewfinder isn't nice at all is it?
    Here's my own recent debut https://www.youtube.com/watch?v=K_m8nthHKN4&feature=youtu.be . without wishing to sound too sicky (I'm from the UK and compliments don't come easy) your page has been an inspiration.
    Thank you both.

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    1. Hi, much appreciation for the nice words. I watched your video and liked it very much, you've got a good take on things. It's interesting that hyperbaric oxygen treatment is so readily available in the UK, when here in the states it's hardly ever used on MS patients. I once looked into its availability here in NYC, and they were only a handful of places offering HBO, and at quite a hefty price.

      For those who would like to view the unaccustomed exerciser's video, here's a clickable link:

      http://youtu.be/K_m8nthHKN4

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  16. It was awesome to see you and Karen, and to know your relationship has made it through the ups and downs of PPMS, mostly downs thanks to that diagnosis I'll bet. My husband has stuck by me (same dx) and I get pretty grumpy at times! Still, he says he's in it for the long haul. And he does have to haul me up from the floor or into a chair fairly often. A great little video, but I wish someone would do a feature length doc on you, as exhausting as it would likely be. Onward!

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    1. I do thank my lucky stars that Karen has stuck by me, as I'm not always quite the charmer that I may appear to be on these pages and on the video. As you so correctly note, PPMS does take its toll in a variety of ways. Glad to hear that your husband is still by your side, kudos to him.

      I'm afraid a full-length documentary on me would be a bit of a bore, would probably turn out like one of those 1960s Andy Warhol films that showed somebody doing nothing for hours on end. Might be interesting to focus on my face while watching a New York Mets game, though, as I'm sure it would reflect almost all negative emotions ranging from anger to nausea to utter despair…

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  17. The WK pulls a Gupta! Great to see Karen and fantastic video, Marc. Way to be a voice for all of us with this disease.

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    1. Geez, I sure hope there's a cure for a pulled Gupta. Ice or heat? Should I wrap it? Wonder how my neuro would react if I called him and told him that I just pulled a Gupta? Would probably tell me to up my baclofen…

      All kidding aside, thanks for the praise. For those unfamiliar with Dave, he's got a terrific website called ActiveMS. Here's his blog:http://activemsers.blogspot.com/

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  18. Hearty congrats all around. And three cheers for Karen (and all the Karen's out there). My Mom is "a Karen" and we come here a lot for your special brand of honesty, humor and wit. It's nice to play some small role in this community you've helped to build...even when it's awful at least it's not isolated awful (blegh)! So, vroom vroom. See you on the streets of NY.

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    1. Thanks for the congrats. And I'll add another three cheers for Karen, and all the other Karens out there. It's hard to imagine what it must've been like to deal with MS or other chronic progressive diseases in the days before the Internet, when finding others with whom to share the load must've been almost impossible. I'm not a tremendous fan of many of the ways that technology has reshaped our culture, but it's certainly been a boon to those struggling with illness.

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  19. Three minutes of great final video means you spent a good chunk of time on this project. Thanks to you and Karen for taking the time and energy to do this video and article, sharing your story and showing many the effects of MS.

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    1. Well, all that was required on our end was two days shooting and a few hours planning. The real work was done by the folks at Everyday Health, who did a tremendous job making me look presentable. Making Karen look presentable doesn't require much work at all, though… Thanks for the nice words…

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  20. If I had (10) Thumbs - they would all be pointing UP right NOW - Marc!!!! -- WOW - what an accomplishment for BOTH of you. Geesh, I remember when you first began -- this is Freaking GREAT !!!!! -- I am PROUD, and Grateful to know, that I know someone like you...
    Regards, Stuart Schlossman

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    1. Well, I'm glad you don't have 10 thumbs, because that would make it extremely difficult for you to do all of the good work you do for the MS community. Thanks so much for your extremely kind words, and also for all of your MS related work. Seems we both got started down this road around the same time, and I'm equally impressed with your accomplishments. Keep on doing everything you do, as you do it so well…

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  21. I overlooked this one until it popped up on Stu's Views (yeah, I know it has a new name!) - so glad we finally got to see you and Karen in the flesh. Now i will have to go over and like it on EH so they might do a sequel. Thanks for sharing a bit of your soul. --Laura

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  22. Hello,i am Zoltan from Croatia. Just discovered your blog and i'm enjoy in reading it. I have ALS almost 20 years.

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