Sunday, June 22, 2014

Must Watch TV – "When I Walk" Airing Monday, June 23

Last year I wrote about a remarkable MS themed film called When I Walk that was making the rounds of local film festivals. In part funded through a Kickstarter crowdfunding campaign, When I Walk proved to be a tremendous success, winning numerous awards and garnering impressive critical praise (click here and here). Though the documentary saw some nationwide and worldwide distribution, it was screened at only a relative handful of theaters, preventing it from being seen by the widespread viewership it so richly deserves. On Monday night, June 23, When I Walk will finally get its chance to reach the masses here in the United States, with a television debut on the PBS series "POV" (click here). In the New York City metropolitan area, the film will air at 10 PM, please check your local listings for air times in your area. When I Walk will also be available for viewing online from June 24, 2013 to July 23, 2014. (Update: seems that the film will be showing on different days in different cities. Please click on the "POV" link, above, to check when When I Walk will be shown in your local area. I've also learned that many Canadian locales also get PBS, so WK readers in Canada should check their local listings.)

When I Walk is the work of Jason DaSilva, a young filmmaker whose previous films have been featured at film festivals around the world. About nine years ago, at the age of 25, Jason was struck with progressive MS and decided to turn his camera on himself. His documentary When I Walk chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands to the extent that he needs help completing the movie. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers, possible cures, and even miracles. Though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS.

Unlike the usual public face of MS, which typically features MSers climbing mountains or celebrities with MS "dancing with the stars", When I Walk gives us an unvarnished view of the realities of multiple sclerosis, a picture of the disease rarely seen by the public at large. For that alone the film deserves heaps of praise; the fact that When I Walk manages to inspire and illustrates the strength of the human spirit despite never shying away from the uncomfortable facts of life with progressive MS is testament to the artistry of the filmmaker, and makes the film "must watch" material for those both inside and outside of the MS community.

Here’s the When I Walk trailer:



It'd be terrific if Wheelchair Kamikaze readers left their impressions of the film in the comments section of this post…


48 comments:

  1. In Houston it will actually aire Tues night at 10 pm.

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    1. Thanks for that info. Folks can check the "POV" website, which I link to in the above post, to check when the film will be airing in their local area.

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  2. LOVE THIS!! A PROGRESSIVE MS WARRIOR IN THE FIGHT TO BRING AWARENESS TO THE HORRENDOUS, HELLISH NIGHTMARE CALLED MS. PPL TRULY DO NOT SEE/KNOW WHAT ONE GOES THROUGH LIVING/BATTLING W/ PwMS DAILY!! I COMMEND YOU JASON FOR THIS!! KUDOS AND BRAVO MY FELLOW WARRIOR!!

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    1. Jason certainly does deserve heaps of praise and admiration for documenting his struggle so publicly and eloquently. I've met Jason on a number of occasions, and he's the real deal, a genuinely good guy. His wife Alice is a great lady as well, both of them good souls…

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  3. I have my DVR set up to tape this. Watching the trailer made me cry -- should be good.

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    1. As they say, you'll laugh, you'll cry… Might want to keep a box of Kleenex handy…

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  4. I have been following the progress of this film since you first mentioned it, Marc, and have anxiously waited to see it through awards and acclaim. I actually got my very own copy a few months ago and it is terrific! Jason has a new project now; he and a team are mapping the accessibility of various public places around the US. Anyone can join his team just by rating places near them. I've actually done that for a few spots in Minnesota. I'm very proud to be connected in this very small way with the work of Jason DaSilva!

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    1. Jason's project is called the "AXS" map, which takes the form of a smartphone app that identifies wheelchair friendly establishments in a given area. The app relies on volunteers to go out and scout locations around town, and I'm sure Jason and his team would welcome all the help they could get. You can find out more at the project's website:

      http://www.axsmap.com/

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  5. Thank you, Marc, for the heads up. Like Melinda, my DVR is set and the trailer also made me tear up, Looking forward to watching!

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    1. Well worth the DVR space. Let us know what you think of the film…

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  6. It really touched my heart. Is there any way I could see it in Israel?

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    1. I think you should be able to view the film on the PBS "POV" website, which I linked to above, starting June 24 and running through July 23.

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  7. The film can be watched on PBS in Canada as well. In Alberta (MST) it's on at 11:00. Can't wait!

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  8. I will be watching and have been looking forward to this documentary. But, a brief criticism, the comment about this documentary showing the "unvarnished" truth of MS versus Jack Osborne's "Dancing with the Stars" appearance, Osborne did a lot during his appearance to raise awareness for MS. He was careful to express how devastating the disease can be, and his experience with the disease is also the "reality" of MS. I am glad that this filmmaker is showing the progressive aspects of the disease as well, but any publicity that brings in money and effort to fight this disease is valuable in my book.

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    1. In all honesty, I didn't watch Jack Osbourne's Dancing with the Stars appearance, but kudos to him for publicizing the cause. I'll stick with my criticism, though, as I wasn't being critical of the stars themselves, but rather the way the media consistently portrays MS. We see the bright, shiny face of the disease over and over and over, but almost never see the horrible truth that many of us living with MS experience on a daily basis.

      When's the last time the media put the spotlight on Terri Garr since the disease body slammed her? How often were Annette Funicello or Richard Pryor featured in the years after MS laid them low, before the disease ultimately killed them? As the old saying goes, one picture is worth 1000 words, and despite whatever message Jack Osbourne attempted to get across, the lasting image in most people's minds will be of Jack dancing his heart out, rather than the tens of thousands of MS patients who eat their hearts out wishing they could even attempt such a feat.

      I'm sure the vast majority of the donations Jack Osbourne may have solicited through his appearances go to the major national MS societies, who over decades have managed to do very little in the way of finding a cure. These organizations do plenty of good, but have become entwined in the MS status quo. Yes, we've made advances in treating MS, at least RRMS, but treatments just aren't going to cut it. We need to finally cure this damned thing, and to do that money needs to flow into the hands of organizations slavishly devoted specifically to that cause. The Myelin Repair Foundation, the Accelerated Cure Project, and the Tisch Multiple Sclerosis Research Center of New York immediately spring to mind. This is the message that needs to be spread, and a film like "When I Walk" illustrates the ugliness of MS in ways that words alone never could.

      Have I become horribly cynical? You betcha!

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    2. YES - YES - YES Marc to everything you just said!
      Thanks for expressing what SO many of us feel. Most people are not aware of the devastation that this damn disease brings.
      Thanks for not sugar-coating it.
      Jason's film is amazing. I just read his story in the Momentum MS Summer 2014 issue titled "Reel life with MS".
      Dee/OH

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  9. Thank you for writing a post on this movie. I am an Indian American like Jason. I was diagnosed with MS two years ago by a neurologist of Indian origin. His reaction to my diagnosis had a profound effect on me. He mentioned that he didn't get to see many MRI of MS patients in med school in India because it is so rare there. He brought up this topic not just once, but several times, he was almost mocking me. I've spent the last two years wondering why my case is so rare. I must not have the good anti-MS genes of my race. Needless to say, I never went back to him and found a different neuro at an MS center. I'd like you to thank Jason for me and let him that he has provided comfort to me on a very personal level. Just to know I am not alone, has made it better for me to come to terms with my diagnosis.

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    1. If/when I next speak to Jason I will certainly pass your message along. We've been trying to get together for lunch or brunch for a couple of years now, but somehow we never seem to get plans nailed down. Of course, these days I'm sure he's quite busy…

      As far as your diagnosis, I am of course very sorry to hear of it. MS is on the rise worldwide, even in places like India where it's traditionally been quite rare. One of the areas seeing the most dramatic increase is the Middle East, for reasons yet unknown. As awareness rises in these areas, so too, hopefully, will the level of care.

      Wishing you the best…

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  10. http://www.womaninthemancave.com/2014/06/monday-tv-when-i-walk-airing-june-23.html
    I shared your synopsis on my blog. I've been waiting a few weeks to watch this on PBS. Can't wait!!!

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    1. Thanks for the kind words you could about my blog on your blog. Your blog looks very impressive, I really like the graphics, and your content seems great.

      Hope you like the film, I'm just about positive you will… My synopsis really doesn't do it justice…

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  11. Scheduled to air in Central Ohio on WOSU on Sunday, June 29 at 11 p.m.
    Can't wait!

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  12. It's on tonight in Milwaukee WI PBS. I do not have an antenna. I may try to hook up a coat hanger to the roof to try LOL
    The trailer had me in tears. You are an inspiration. I have been following your blog a long time. Peace my friend.

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    1. I'm pretty sure your cable package (assuming you have one) should include your local PBS station. If not, call them up and yell at them!

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  13. I'm excited about this film, thank you so much for the heads up. I started reading your blog, Marc, when I found a bunch of my quirks, as MS or some such neuro disorder a plenty, out there in the "New Frontier." And a Neurologist agreed, something wasn't right. Turns out it's Parkinson's, but there is no test to say so for sure. I'm still at the stage wherein on a good day I wonder if I'm just crazy, well was, till I started to drool. Or something like that. The reason I'm excited about the film was the summer MS was suspected, I went online and Montel was jumping out of an airplane and the other guy (Ha! I forgot him already) was hocking some snake oil. Every You Name It Neuro Support Group wants you to go for a walk for a cure. And just like a song, then I found you. I don't care if I have Parkinson's, you are like the little brother I never had. I was so bad off, I'd try to tell you what you meant to me... I have aphasia, and a host of bothersome goodies. Mostly though -- I was not used to not being myself. I'm not myself, I'll never get used to it, but I've grown accustom to unfamiliarity. It's been about three years, I got my dx early this year and started on a nontraditional course. I am doing better for it. And I always look forward to an email telling me you have made a new post. I know that I'm one of countless people that find you out there in the storm of BS and Celebrity Culture like a beautiful, wonderful little lifesaver. You were mine. Thank you, Marc.

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    1. Thank you so much for your tremendously kind words. Especially meaningful to me, as my mom has Parkinson's.

      As for not being used to "not being yourself", I wrote a post a while back titled "I Miss Me". If you click the title it should open up in a new page. The title pretty much sums it up, though. Although the "old me" still exists somewhere deep inside, impatiently waiting for a chance to come out, the realities of a progressive neurologic disease inevitably changes your sense of self. And seeing the impact of such diseases minimized in the media, either through celebrity portraits or reports of supposedly revelatory treatments, can drive those of us getting the worst of it bonkers.

      It certainly does help to know that there are other patients out there who aren't jumping out of airplanes or running marathons. In fact, I think we might make up something of a silent majority… Thing is, I refuse to be silent…

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  14. Watched it last night with my husband. I expected to cry and perhaps depressing. I teared up a few times, but the movie was not depressing. It was an honest look at Jason's life and then Jason and Alice's lives. There are times of joy, sadness, and frustration. He hit on many topics that I could relate to very well, even though he's much, much younger. I also thought that he showed how MS impacts others in our lives, not just those of us with MS. Love his mother, too.

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    1. Thanks for your thoughts. I completely agree, Jason did a wonderful job portraying the full picture of life with progressive MS. The picture isn't pretty, but there is still joy, or at least contentment, to be found when one looks beyond the surface. Joy, sadness, and frustration are part of everybody's life, but a disease like MS acts as a multiplier, magnifying all of these aspects of existence…

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  15. I, too, have looked forward to seeing When I Walk. Jason didn't disappoint - it was a very "real" film of a real person struggling. I agree with Alice (his wife) when she mentioned that the films that have made the most impact on her were those that were candid and brutally honest (the brutally honest words are mine). Excellent film - kudos to Jason and Alice!

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    1. Quite right. Fantasy has its place, but I've always favored art that cuts to the chase, that exposes sometimes hidden and painful truths for what they are and offers them up for examination. I've never been one for "check your brain at the door" entertainment…

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  16. I live in Ottawa Canada, where our local PBS station is Watertown NY. This station premeried the showing of "When I Walk" at 5:00 am this morning. The only other showing is at 3:00 am Saturday. I intend to set the alarm. I'm unable to watch it online because of cross-border issues. I've been looking forward to seeing this for a long time, and will comment once I see it. Maybe I should consider getting a PVR.

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    1. Hope you got to see the film, Stephanie. Surprised that it's not being shown at a more convenient hour, kind of strange…

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  17. Hello Marc and fellow MSER's: I watched the film in Vancouver, BC, Canada on our local PBS. It was a admirable film with a lot of heart and soul. I can only imagine the hard work involved for this husband wife team. Now, lets see if MS SOCIETY of BC will suggest this…………….have you checked their site……it is so lame. I recommended your site and she never heard of it. Thank you for following up on this innovate producer. I am very pleased with the wealth of knowledge your provide for the discerning MSER. Especially for those of us with the progressive forms. Knowledge is POWER. Much thanks.

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    1. Knowledge is power, and I'm a firm believer in patients being their own best advocates. Unfortunately, I think the MS societies have a vested interest in keeping the harshest of truth's about MS away from the public eye, as they could ruin the spin that modern medicine largely has MS under control. They've got to keep the donations coming, and the ugly side of MS might scare people off.

      Not that I agree with this approach, but I surmise that may be the thinking behind their sometimes inexplicable actions…

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  18. Hi Marc, Thanks to you first mentioning this film in progress I was aware of it's existence and looked forward to seeing it. By sheer happenstance I was channel surfing for something to watch and it was just beginning on WI public tv! Cool!! It was an excellent film! Just the fact that nothing was sugar coated, white bread, I have ms it doesn't have me was refreshing. That he tried many things to keep himself strong and mobile will hopefully dispel the misunderstanding that if you just try harder you'll conquer this crap. I'm so sick of that misconception! And Alice...Wow! To sign on for the journey through life with someone who is already disabled and steadily declining is a testament to the power of love!
    Though I've only been diagnosed and declining in the last five years, I will be celebrating my 35th wedding anniversary next month! Those of us that wrestle with this monster have no choice, but our spouses could leave if they chose. I try to NEVER take for granted the fact that my husband comes home to me everyday.
    Five stars for the film, you and your blog, our spouses and anything else that keeps us keepin' on!
    Karen

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    1. Karen, I second your emotions! I promise that you'll never see the words "I have MS but MS doesn't have me" on this website, unless I'm using them in some ultra sarcastic fashion.

      I tip my hat to all spouses of people with MS that choose to stay in the picture. A lot of them don't, you know. I was diagnosed just one year after my wife Karen and I got married, and somehow she's still with me 12 years later. Thank you, thank you, thank you. The husbands and wives of people with MS simply can't get enough credit.

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  19. Hi Marc, thank you for the heads up on the movie. I recorded it and finally got a chance to watch it. What a powerful film. An emotional rollercoaster ride right from the start. I admire their courage for laying it all out there, the brutal honesty was so refreshing. So many MS 'success stories' seem so fake. Thank you Jason and Alice for this awesome film, so glad you overcame the challenges that were presented when you were producing it. Now I'm curious as to how they are doing today, do you know? I was sad when the movie ended, or was I waiting for the happy ending?

    I've finally accepted that my MS is not going to get better but maybe I can help it not get worse. That is my goal, by reducing inflammation, and blood sugar through diet, lifestyle choices, like good sleep, low stress, and excercise. I am hoping it will not progress as fast. I have RRMS, and I was diagnosed at 52 yr lasts December, but I think I've had it for the last 4 years. I have a scooter and I have this huge ego that won't let me ride it in public yet, so I don't really go out that much. I'm working on changing that mindset and this movie really helped. I have an awesome husband who is very supportive and I am deeply grateful for him. Thank you Marc for your blog. I really look forward to your posts.

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    1. Hi Kelly, thanks so much for sharing your thoughts. I haven't been in touch with Jason for a while, so I'm not really sure how he's doing. I've been meaning to send him an email, but I figure he's probably buried under an avalanche of emails these days, so I should probably hold off for a while. As for the happy ending, although Jason didn't find a cure, his wife did get pregnant and have a baby, so I think that qualifies as "happy", don't you?

      Sounds like you are doing all the right things for your MS. Are you on any disease modifying therapy? I know this sounds strange, coming from a person who is decidedly not a big fan of the pharmaceutical companies, but that goes more for the systemic deficiencies of our medical research model than for some of the products they've come up with. Anyway, there does seem to be mounting and convincing evidence that treating early MS with one of the newer, more effective drugs does positively impact the long-term outlook for MS patients. At the very least, they do seem to increase quality of life, and some interesting studies have recently come out suggesting that they might even stave off long-term progression. I completely understand if you want to keep it "natural", but do keep an open mind about some of these newer drugs. It's worth a discussion with your neurologist, anyway.

      As for using your scooter outdoors, please try not to let your ego hold you back. I allowed the ego "speedbump" to keep me relatively housebound for too long before I finally acquiesced to getting a wheelchair, and could hardly believe that the world didn't stop spinning the first time I've ventured out into public view with it. But, alas, hardly anybody even noticed me, and suddenly my world had grown exponentially. I bet if you try it just once, you'll be hooked…

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  20. Marc, bless you for this blog and Jason for his brilliant film. PPMS 'hit' at 51 and 7 years later, it's course has left me bedridden with difficulty speaking and eating. I lost ambulation a few years back and function in my left hand and arm, now the right is weakening too. I've spent the better part of today reading posts regarding the film on MS related FB pages. Most of the comments are positive, but some are critical claiming he is 'feeling sorry for himself.' Usually these comments are from folks shown biking or rock climbing, who believe mind over matter and a better outlook are in order. I know these comments usually come from fear, naiveté, or ignorance, but they sadden me, as it seems like there are few places for folks like me or Jason or others w PPMS to land and be understood. His story isn't woe-is-me, it's his reality. I love my life, my wonderful spouse, kids, dog, music, books, and yet MS does 'have' me in spite of everything else. Not the best part of me, but the part that can't be fixed by mind over matter, a body that betraying me. Thank you for being a place to land.

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    1. Hi, thanks for your comments. So sorry to hear about your diagnosis and progression, nothing to say but "MS sucks".

      I've also read some negative comments about Jason's film, and like you found that most of them came from people who are relatively unscathed by the disease. Not to downplay the effects of the disease on anyone, as MS is an insidious beast even in its more benign forms. I do think, though, that most of the negative comments come from a place of fear, and a desire to leave the truly ugly side of MS unacknowledged. Of course, not everybody is going to like even the greatest films (I know some people who don't like "Casablanca"), but I do think that When I Walk is an exceptional portrayal of somebody making the best of a horrible situation, and doing it in an artful manner at that.

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  21. Marc
    Streamed the movie last night and watched a interview.
    From pbs. Now sharing
    http://video.pbs.org/video/2365271212/

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    1. Thanks for the link, Joey. Unfortunately, the PBS site doesn't allow access to the film from places outside of the USA, but those within the US can watch the film "on demand" from the site…

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  22. This film is excellent, as real life portrayed of how fast this disease became within a few years. Looking for cures, life, and a real inside story that is heart touching. A Must see movie. Helps explain to others progressive MS, and what I am also dealing with.

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    1. Right there with you, brother, dealing with this hideous creature. Really, it's difficult to think of a more cruel disease than aggressive, progressive MS. Leprosy, maybe? Not to minimize how terrible other horrible diseases are, and better to not let the mind dwell on such things for too long…

      I agree with your assessment of the film, and let's not give up hope that there won't be a way found sometime soon to at least slow down our damned progression…

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  23. I loved it! I too have PPMS with a similar progression as Jason's. Within months of first symptoms five years ago I was permanently at EDSS 6.0 and now at 6.5. It is about time we hear about PPMS because no one ever talks about it, like ever. People, even some others with MS just don't seem interested in PPMS at all and I've already read negative reviews on some MS websites -- that they can't relate and they wouldn't recommend as it would scare people and that "most" people don't progress that quickly, etc. But you know what? People like us DO progress quickly and our stories need to be told!

    Jason and Alice did an excellent job! :)

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  24. Enjoyed this very much, didn't watch anything else, but unfortunately, didn't get to see the last 9 minutes...what happened after the miscarriage? How can I see the ending of this very talented person's trials with MS ...I cried at the wedding...

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  25. Glad you enjoyed the film, sorry you missed the last nine minutes. If you Google "When I Walk" you'll find a number of viewing options available, like Google play and Hulu. I won't spoil it for you by giving away the ending, but it's definitely upbeat…

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