2 Short Films Take Different Approaches to Portraying Life with MS

Ed Tobias avatar

by Ed Tobias |

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Over the past week, I’ve come across two short films that are designed to show what it’s like living with MS. But they have two very different approaches.

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The National Multiple Sclerosis Society in the U.S produced one of the films. It runs about 3 minutes, features several people who live with our disease, and appears to be designed as a fundraising tool for the society.

The other film was produced by a nonprofit group in the U.K. called Shift.ms. Called “Hidden,” the film runs about 10 minutes and is designed to expose the parts of MS that are out of view for most people in our lives.

What do you think?

For a change, I’m not going to say much more. Rather, here are some questions for you. Does the first film provide an accurate picture of typical MS patients? Does it, for the sake of fundraising, paint a picture that’s too positive? Would you show it to someone who wants to know what it’s like to live with MS?

Does the second film provide an accurate picture of a typical MS patient? Does it succeed at revealing our unseen symptoms? Would you show it to someone who wants to know what it’s like to live with MS?

Which approach works better for you?

You’re invited to follow my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Doug avatar

Doug

I feel the 2nd film does a much better job of trying to explain what living with ms is like,at least for myself.

The 1st film starts off well but ended with a much "sunnier" feeling, but I guess people would be less likely to donate if others felt like the end is nothing but bleak.

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Nanette Colomb avatar

Nanette Colomb

I think that Hidden is very well done, very artistic. I, also, think it can be a little bit difficult to follow as well as being vaguely disturbing but mostly portrays the difficulty and frustration of MS. The first film tells stories of difficulty which are easy to dismiss because they do not involve the viewer viscerally the way the Hidden does.

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Denise Gibson-Franks avatar

Denise Gibson-Franks

The second film shows what it's like to live with MS more than the 1st film but goes nowhere near how bad it REALLY IS to live with MS. SHOW THE REAL DAMAGE IT DOES TO THOSE OF STUCK IN WHEELCHAIR ALL DAY!!!!!

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Donna Milord avatar

Donna Milord

Wow! The second film is amazingly accurate for me. Trying to be cheerful and upbeat on the outside but facing invisible demons on the inside ...
and constantly. Seeing this made me realize so much about my MS 'battle,'because we all know how hard it is to put into words. I'm crying right now.

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Roberta Scott avatar

Roberta Scott

I totally agree with you that the first film is a fundraising piece. I get so tired of the happy shiny people in the drug ads; doing just fine, of course. And the folks in the fundraisers always seem to look so middle class and full of Hope! That's Not what most of us deal with.
Finding help, funding for basic needs and medications is near impossible for a large percentage of the MS population. This I know from experience.
I almost found the first film offensive.
The second one, on the other hand, was so close to my own experiences that I had to shut it off after about six minutes.
Still in tears...

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Mer avatar

Mer

I wasn’t sure what was happening in the second film. The first was very positive but really didn’t give any concrete information regarding symptoms. I am going to contact my nephew thep filmmaker. His mother and I are survivors. Thanks for making these available.

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Linda Sasser avatar

Linda Sasser

Well, contrarian that I am, I found the second film too opaque and difficult to understand. I know that the darkness was intentional, but it came across as deliberately arty. I agree with others that the first film didn't show the diversity (in every category)of those of us affected by MS, but if I were to need a film to explain MS to someone who didn't understand, it could be used as a tool. I wouldn't want anyone to think that MS has made my life as negative as portrayed in Hidden.

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Alan avatar

Alan

The quality of both films was great. It was good to see some men in the first one. I think we often get overlooked because we are such a small percentage of the MS community. Either way the first I saw people in different stages of the disease but there was no explanation of how the disease works, the progression. The second tried to show the pain and struggles of someone who by all appearances looks totally healthy. But not everyone gets modern dance. What about the phantom pains? The nights when you are in such agony that a Steamroller crushing your legs would feel better. What about the bladder problems? Or for men the loss of our sexual abilities. The hell of being constipated for over a week. Only to be given more pils to help fix things the other pills broke. And we should never forget the Cog Fog or the other mental issues like depression, anxiety, extreme mood fluctuations.
I’ve always thought that you tell the truth the whole truth.
Show ‘Frank’ a handsome 40 something waking up in the am, first he has to cath because he can’t on his own anymore. Or maybe show him changing his night bag and then strapping on his leg bag. Then show Frank counting out his pills. Post it notes are everywhere reminding him to take his pills or to shower. Show him checking his emails and adding appointments to the white board he keeps. Show him getting up showered dressed and then he is so exhausted he can’t go now. Show what it feels like to live with this god awful disease on a daily basis. Show the progression of the disease. The ones with RRMS who are doing great and are happy “well adjusted”, but then show the RRMS who can’t feel her hands, smell a flower, or the 27 yr old that can’t walk without a cane. Some days he can see others nit so good.
So there is my opinion of two beautiful films that really show nothing or really explain the hell that Multiple Sclerosis is. Explain why it’s called the snowflake disease. Show both men and women equally. And show the truth.
Thanks,
Al

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Ruth avatar

Ruth

Well said, Al.

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noelle avatar

noelle

also totally agree with AL. the second piece tries to show it, but it's too artistic. they need to show REAL people with MS. those of us who have somehow managed to get into Dante's unknown 8th level of hell!

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Gale Vester avatar

Gale Vester

Well said, Al.

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Cyndi avatar

Cyndi

Two totally different approaches. As regards the questions you pose...the short U.S. film may in fact accurately portray a typical RRMS patient but I don't find it emotionally compelling. I in fact successfully "hid" my MS from my employer, friends and all but most immediate family for over 27 years. Probably not the best path for everyone, but it worked well for me and I wouldn't change it. However, if the U.S. film is intended for use as a fundraiser or to depict life with MS to others...it misses the mark in my opinion. The "artsy" U.K. film depicting the ever present shadow of MS that is our companion is more compelling -- the unforeseen obstacles, the challenges of everyday simple tasks, and the tendency to drop out of society by saying "no" to opportunities. In the end though...I welcome any and all methods, means and formats by which awareness is brought to the many complicated layers of MS.

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Don avatar

Don

First off, your personal blog looks awesome. Everyone needs to check it out.

The video by Shift.MS was good at conveying what it is like to have MS and was very entertaining as well. David Lynch could expand it to a full-length feature film!

The NMSS video was very non-specific and could have been about cancer, Parkinsons, or any debilitating disease. My friends tell me they want to understand MS, but I wouldn't share this because it does not convey what it is like to have MS. Many people have serious problems and my intent is not asking for any additional sympathy.

Seriously check out the themswire.com. I am sold. Now I have two great online sources of current MS information!

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Ed Tobias avatar

Ed Tobias

Hi Don,

Thanks so much for your kind words about my blog, The MS Wire. I try to provide info that's useful, interesting and entertaining. (One or more of those adjectives).

As for the videos, I agree about the one produced by the NMSS. As you say, it could be about any disease and it seems to me to be falsely positive.

Ed

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Mary Thompson avatar

Mary Thompson

The first film was nothing new. Same song, second verse. The second film was dark, depressing and difficult to understand. I've had MS for 40 years and I've seen all sides of it. It doesn't seem productive to show a happy, positive face nor a scary disheartening side. MS is challenging, sad, heart breaking, difficult. It can also be the source of strength, resilience, and fulfillment. Neither was informative to me.

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Ruth avatar

Ruth

The second film was more typical of my experience. I was particularly impacted by the “staircase” scene - very familiar to me.

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Sandy Stolaronek avatar

Sandy Stolaronek

I could somewhat identify with both of the films. I'm just in a stage now where I don't even get out of the house anymore, unless I absolutely have to, to get meds or for a much needed doctors appointment. I'm waiting to get approved for Ocrevus but now my MS nurse is saying that she doesn't think that I should since I've been getting too many UTI'S and respiratory infections, which I thought was something that you had to worry about with the last drug, Tysabri. I thought it was breast cancer that was the big worry with this new drug but I've heard many good things about it, so I was looking forward to trying it. It's just more time that my MS is going to have to destroy and ravage my CNS. I wish someone would make a movie that I could identify with but then again, don't we all....

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Gale Vester avatar

Gale Vester

The first one is all too happy-crappy. Yeah, we are all hopefully patting each other on their backs as everyone's Mysterious Snowflake goes in for second- and third- and however many-helpings of myelin from our CNSes as it wants, and I had to look up what that acronym meant. Central Nervous System. Central f#cking Nervous f#cking System.

The second should be watched on a screen larger than an iPad, without enlarging the frame any bigger than it automatically shows, which isn't much larger than a postage stamp or or or or, well, other small, outdated bits of ephemera.

Having to identify with this f#cking unique life-sucker is probably someone's idea of hell.

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Jenny Watts avatar

Jenny Watts

I didn't care for either video. The first was too "I have MS, but I am always able to deal with it", "I am a warrior, I am strong, I don't have bad days, depression, thoughts of giving up". To me, the first one is not realistic.

In the second video the lighting was not adequate, even when I turned the brightness up on my screen. Therefore it was hard to stay focused on what was the message.

IMHO artsy-fartsy is not needed to show a life with MS. Just plain simple truth, not only the good, but the bad. Such as, before MS, I did this or that. After a while with MS, I lost the ability to do this or that. What does that mean to me? Have I adapted? If so how? If not, how am I coping or not coping?

What is a typical day for some MSers? How long does it take to get dressed in the morning? How long to shower? How difficult it is to put on shoes, pick something up off the floor, stand up to brush their teeth? Get from the car to a store? What kind of help do they have to have to do normal ADLs? What is the rest of the day like?

Interview those that have a good support system and those that don't. Those that can get assitance and those that can't.

Interview those that are doing well on meds and those that aren't.

Interview those that have hope and those that don't.

Be real, be honest.

That is MY opinion.

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Ed Tobias avatar

Ed Tobias

Jenny,

Thanks for taking the time to comment. I think you hit the nail on the head and I'd like to see a video produced with the content that you suggest.

Ed

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Etosha avatar

Etosha

I saw Hidden a few months ago and showed it to my Mom and best friend and they asked me if that's how I feel, Yes It! In every sense of the word, Hidden gives such a great interpretation!

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Benno avatar

Benno

Second video (Hidden) truly resonated with me. Chillingly accurate!
I intend to show it to friends and family to give them an idea of wot it's like. 👍🙂

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