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mser79

Hidden- the staircase - symptoms

https://youtu.be/tveMmRDrkEM Hi guys, I'm Cathy, an MSer and a producer of Hidden, I worked on Hidden with a focus from development to edit on the representation of MS and its symptoms. One of the ideas I had early on generated from my own feelings of being newly diagnosed in an urban environment, was the feeling of the hostility of cityscapes that seemed pretty ordinary before. That's where the idea of the oppressive never-ending staircase came from! Many staircases have felt like that to me. Streets and stairs, estates, can suddenly disable you when you develop MS symptoms and that can be so disorientating. Likewise the door and lift scene also came from experiences of muscle weakness and lack of coordination I've experienced. I was wondering if anyone else had ever felt like this? Cathy

highheeledfagin

@highheeledfagin

Hey, congrats on the vid: it's so accurate. That's definitely how staircases look to me. When I first started having mobility issues on top of the fatigue, I started to notice just how many stairs there are when taking the Tube. I switched to travelling by bus wherever possible or would take longer routes to avoid stations with lots of stairs - or really long walks between lines like Piccadilly to Northern at Kings' Cross - for a couple of years. It's still a factor now, but much less so. I also can't carry a full pint and walk to my table because my hand shakes a bit when I'm holding things, so I always take a large swig at the bar to avoid wet hands. Opening heavy doors or jars makes me really frustrated, particularly with the walking stick strapped to my wrist.

potter

@potter

We have changed plans because of stairs and layout of hotels. We had reservations at a old court house converted into a hotel near Mt. Rushmore. When they started to take us a steep and narrow stairs we knew I couldn't handle it. They had a tiny room on the first floor we traded for. My husband shows classic restored cars at shows, we had reservations at one show that was 200 miles from home. When we got there we found out the show that was in a parking lot a block away. We could walk down a steep hill to get there or walk the block. We canceled our reservations and went home. My husband likes to go to estate sales on the weekends. He will check out the basement and 2nd floor, I hang around on the 1st floor waiting for him to come back. You have to adapt and keep going, my mother in-law is 95 and uses a walker inside and cane outside. She is also blind in one eye. She goes out with friends and relatives several times a week. She says it keeps her going. We are going to Yellowstone this fall, it is a driving trip and cool temperatures. We will take a different route each way and may pull off and stop at a dozen little towns and road side attractions along the way. It may be a different type of vacation but we will have fun and enjoy it. Potter

Stumbler

@Stumbler

@cathy , that was a realistic, and painful, portrayal of what we go through. It will resonate with a fair few of us, I'm sure.

MarkatWindsorCastle

@MarkatWindsorCastle

Hey Cathy, so good to watch something I can relate too, I live and manage a pub in SW1 and have to climb two flights of stairs many times a day it's one of the battles fatigue starts each day and one I try very hard to win. Great short, well done you have a talent. Best regards Mark

looK

@looK

Oh wow, when I saw that staircase on the film it reminded me of how I was looking up the very lengthy staircase recently at our local sport centre as I was trying to get to, wait for it, a NeuroPilates class for people with MS and Parkinson’s! I turned round and asked where’s the lift? Such a good film - clever.

embroideress

@embroideress

@cathy Oh yes, that's exactly how I see the stairs in our apartment building, especially this weekend when the elevator was out of order, and we live on the 5th floor. You captured the feeling of terror and frustration of affronting stairs. Great film!

grandma

@grandma

I'm lucky, mr council have just put me a through lift in so I can now go upstairs to bed and use my disabled bathroom! Went to London on Thursday and did the tour of the Houses of Parliament, had to take a few detours, after all it was built a long time ago, but everyone was very helpful and I had doors held open for me and lifts with accompanies, it was a joy but getting round London generally was about the same as home, not meant for the disabled but I did find cafes and shops as helpful as possible but having had 25 years of the beast the film was brilliant and rang so many bells. Well done!😍 By the way 'look' I used to go to pilates myself until mr government took my disability car away so now I do no exercise at all forward thinking or what!

mser79

@mser79

@look, the neuropilates class sounds excellent. And good to know it can work across MS and Parkinsons. Obviously its in Aberdeen, who runs its?

looK

@looK

Hey @grandma, that is a real shame about your car and having to stop going to things like Pilates, very short sighted powers that be! And hi @Cathy, yes the NeuroPilates is very well run -very small class with maybe 6 people (one who is recovering from a stroke and the rest MSers and Parkinson’s with two NeuroPhysios! It’s run by Spear out of the Aberdeen Sports Village. I heard about it through ms nurse to help recover some semblance of balance! It’s been good for all of us in the class, especially having a laugh. :-) Loo - K

Thecuriosity

@Thecuriosity

@cathy i've enjoyed the video, and it did a good job of illustrating something i struggle to with the fatigue and the cog fog i get sometimes, when everything just drifts out of focus. if only i could pick the times it happened. It definitely does change your experience of an urban environment when you have this disconnect between how I used to bound about and not get too run down and now can struggle with getting out to the shops. i found incredibly that hard at first. the idea of an anti-you as this malignant agent that stops you from achieving also really caught me and i can relate with this, because it still feels like you've failed if the disease gets the better of you. it was easier to watch than i thought it might be though. Thanks for working so hard on it and bringing your own experiences to the screen, look forward to seeing more hopefully!

Fahsai

@Fahsai

@cathy, this is a brilliant video, such a great way to express the internal struggles that are completely invisible to the inexperienced eye, thank you!

ajcb

@ajcb

Brilliant. You are a talented team. Been there since 2003 so... I've put it straight on my FB for the lovers and the haters. Peace, AJCB

Stripes14

@Stripes14

Cathy, Well put together short film. During the movie I felt myself getting really quite sad. I thought that it would end in tears like many a day I've had due to my symptoms. But......it didn't.... Actually cheered me up and made me feel better for the day ahead. Thanks....it all ends well.

MattRive

@MattRive

I’m really sorry ‘Fam’ but this is not good and I’m quite surprised everyone’s connecting with this. Firstly, is it really helpful imagery? Showing MS as someone who’s possessed, it’s like we’ve regressed 200 years. I also feel like it’s aimed towards such a tiny proportion of the MS community, struggling to ‘spit their bars’ and go to the local shop. It reminds me of that awfully patronising ”Votin” campaign aimed at young people during the brexit referendum. A lot of people with MS are actually in work doing really difficult jobs, overcoming little battles and ignorant people every day. I appreciate the effort and there are glimmers of goodness (lots of comments on the stair scene), I respect its made from someone’s own experiences but I despair at the thought of people actually being informed by this.

Faultymike

@Faultymike

I think the video is excellent, brought a tear to my eyes. The interpretation of an invisible self dragging you back is fantastic - I can completely relate to it. This explains how I feel a lot of the time. I work a busy job in the NHS and externally I probably look fine most of the time (except for my walking - people think I've injured my leg!) but they don't have clue how I'm really feeling, this video says a lot. I'm a 40 year old male who has a professional job and lives in rural Norfolk, the fact that the main character was a young rapper from a city is irrelevant to the main message. Thank you.

digger

@digger

Managed to activate the film by restricting something or other as previously it wouldn't show so was able to see the film after all. Interesting to see the stairs featured because stairs have been my nemesis forever, even when things weren't quite so bad. I get constant low-level pain that becomes worse as the fatigue and effort from walking increases. The pain is also enough to stop me sleeping unless I am well medicated. The film, it was an honest attempt but I agree with the previous regarding the rapper theme and Initially, I thought I was going on to some weird video about sexual violence or something. I was slightly bemused by this as I had, previous to watching it, shared it on facebook. I thought the dinginess of the surrounding further cultivated an atmosphere of imminent peril. It just didn't seem like a good neighborhood. Yes, I am not sure this added to the message although I accept that M.S is not a class, age or cultural specific illness I was distracted by the squalored surroundings.

LeonieM

@LeonieM

The doppelganger portrayal was really effective - I have often felt MS is unfortunately like sharing your life with a 'toxic twin'. And the scene with the stairs was spot on. I did struggle to understand some of Keisha's vocab as it was fast and had a strong accent, but I can see that this script will help to make the film resonate with young people in the English speaking world.Well done Shift MS for depicting these hidden symptoms of MS in such an accessible and engaging way 👍🏼

TexasMary

@TexasMary

Hi Cathy! I saw Hidden today & posted a rave review a few hours ago. Bravo! I mentioned you in the comment too. I’m thrilled to meet you!