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Rochester Film Society/Sick! – Living With Invisible Illness

The experience of watching a film in a darkened room surrounded by strangers can certainly be considered a lonely endeavour. Shutting out all extraneous thoughts, feelings and anxieties which may have been percolating over the course of the day leading up to an evening’s retreat in the cocooning sanctuary of the cinema can also be incredibly therapeutic – a visual and aural balm to soothe away the stresses and strains of modern life. Cinema is an escape, regardless of the subject matter thrown up on the screen; it is a haven, a state and mind-altering distraction into an alternate reality, if only for a couple of hours.

Cinema had been widely tipped to have had its day, superseded by the combined might of Netflix, Sky and Amazon Prime in the battle for our viewing attention. Box-set binging is the order of the day now as we gluttonously devour the latest season of whichever TV show happens to be trending on social media – the clarion FOMO call defying us not to engage and consume like all good consumers must, obeying the master-to-servant mantra from on-high.

Television can be consumed in a very sociable setting, with friends and family, all the home comforts and a very convenient pause button, handy for loading up on snacks, or for dropping them off. Cinema can also be sociable though with the gaze fixed on the big screen, joyously distraction and chatter-free. Laughter is communal and emotions are heightened by the shared experience of the screening room.  Post-film discussion provides catharsis, greater understanding and fellowship as the lights come back up.

Entirely volunteer-led and non-for-profit, Rochester Picture Palace has been screening films on Rochester High Street for the past four years or so, originally at the Corn Exchange where we adopted the name of a former incumbent a century ago, ‘Rochester Picture Palace’. Now relocated to the Huguenot Museum above the Visitor Centre we have undergone an upgrade with retractable raked seating and a bespoke drop-down screen. Our nationally commended programming largely avoids the mainstream fare served up at the multiplexes but instead focuses on the wealth of alternative and world cinema. We aim to represent all sections of society, screening award-winning films ranging from ‘The Tribe’, a Ukranian movie shot entirely in sign language with no sub-titles, to ‘Tangerine’, a Los Angeles-set transgender feature film shot entirely on iPhones. 

Some of the Palace’s most memorable evenings have been collaborative efforts featuring guest speakers, such as the screening of ‘Suffragette’ on International Women’s Day; ‘Mission To Lars’ with the Challenging Behaviour Foundation and our two afternoon screenings to commemorate World Holocaust Day. Medway is such a vibrant area teeming with a diverse array of talented artists and an abundance of fantastic folk who care passionately about the lives of those around them. This, for me, is the defining aspect of society. Local arts and cultural initiatives have been at the forefront of promoting community-based events, raising money for good causes but also awareness of issues which otherwise would garner little or no publicity from the mainstream media.

I, Daniel Blake by Ken Loach
I, Daniel Blake by Ken Loach

Rochester Film Society is proud to be involved with ‘Sick! – Living With Invisible Illness’ with the screening of Ken Loach’s Palme d’Or-winning ‘I, Daniel Blake’. The film is a scathing critique of Broken Britain’s humanity-stripping bureaucracy, exposing the humiliation and shame heaped upon disability benefits claimants. The film is also a beacon of hope, however, as it shows how real change can come about by people coming together and helping one another. It is by collaboration and co-operation rather than conflict and division that we can forge ahead and become a society where those without a voice are heard and those in need of help and support are not ignored. 

Written by: Gary Barrell, Rochester Film Society    

I, Daniel Blake 15 cert, 100 mins (UK)
Dir: Ken Loach
Cast: Dave Johns, Hayley Squires

Tuesday 25 July, The Huguenot Museum, 95, High Street Rochester, ME1 1LX
7.30pm, £6, concs £3.50. https://www.eventbrite.co.uk/e/rochester-picture-palace-i-daniel-blake-tickets-35454148312?ref=wplist

https://rochesterfilmsociety.co.uk/

https://www.facebook.com/rochesterpicturepalace/

17 Things Healthy People Need to Hear

reposted from The Mighty [original article here]

When a person’s illness isn’t easily visible, it can be difficult for outsiders to grasp the challenges he or she faces. “If you look ‘normal,’” they may say, “you can’t really be that sick.” Nothing could be further from the truth.

As the chronic illness community comes together to support Invisible Illness Awareness Week, which began on September 26, we asked our Mighty community what message they want to share to explain the truth about how invisible illness affects their lives and how their friends, families and acquaintances can better support them. By educating the general population, we can hopefully get closer to acceptance and understanding of the realities of invisible illness.

Here’s what they said:

1. “I appear as I want you to see me. I paint on my ‘I’m OK’ face every morning before school and walk around with a smile, but the truth is that I am in chronic pain, always struggling, but you will never see that because I do not want to appear in that light. You may believe I am faking being sick, but I am actually faking being well, and people need to not be as quick to judge.”

2. “Just because I’m young doesn’t mean I’m not disabled. I have had many older men and women yell at me and point to the handicapped sign and then they realize I have handicapped plates. Just because I’m young, doesn’t mean I’m not struggling. I didn’t realize disability had an age limit… someone should really tell my body that.”

3. “I don’t need you to understand what I go through. I just need you to be a compassionate human being like you would to someone who was fighting an illness you could see. Don’t pity, but be decent.”

4. “Just because you’re tired of hearing about us being sick or in pain doesn’t make us any less sick or in pain. I know you can get desensitized to hearing we’re in pain every day, but we don’t get the luxury of being desensitized to the pain. Please be patient with us, and remember we’re struggling and often smiling through pain.”

5. “If I’m out doing something and smiling, I’m running on adrenaline and it will take me several days to a week to recover.”

6. “My illness may be labeled invisible, but if you look closely you can tell when I’m not doing well. I use a wheelchair, I’m more pale, don’t talk as much, etc. so my illness really isn’t that invisible.”

7. “Though I may have the same illness as your aunt, your friend of a friend, whomever, I’m not going to be the same or healed by random internet advice. Please don’t be Doctor Google unless you’re trying to be supportive and educate yourself.”

8. “Just because an illness or condition isn’t widely known doesn’t make it any less serious than any other illness.”

drawing of little girl looking up with quote just because an illness or condition isnt widely known doesn't make it any less serious than any other illness

9. “This isn’t who I am. My illness does not define me. So even when I am sick, I will pull myself together. I will have a social life. I am determined to live my life to the fullest, sick and all.”

10. “Chronic illness can be lonely. It is easier to make no plans than to cancel plans, especially when friends and family members may not be able to understand. Please don’t give up on a person because their lives are busy with doctors, treatments, and seeking health.”

11. “Just because I can hang out with you seemingly normally for hours doesn’t mean I’m not in pain inside.”

12. “We don’t want unsolicited advice on how to treat our diseases! We don’t care that someone you ‘know’ has or ‘had’ the same thing. Everyone is different. Please keep opinions to yourselves unless specially asked a question.”

13. “My illnesses may be invisible, but I am not. My illnesses may be invisible, but my voice is not. My illnesses may be invisible, but the dreams I once had, the faith I once had, the person I once was — they are not.”

14. “I push myself well beyond what my illness truly should allow me to. I try to be the best wife, mother, coworker, and friend I can be. I probably disappoint myself way more than I do you.”

low battery running with text next to it i push myself well beyond what my illness truly should allow me to

15. “I am not going to get better. I think people have a hard time getting that. For them, they get sick and then a few days or maybe a week later they get better. When you are still sick months, years later, people have trouble with that.”

16. “Ask questions before you judge me. I’m happy to share my story and want to educate others. My pain is real so if you don’t understand get to know me.”

17. “Using the sentence ‘I believe you’ will be one of the most empowering things you can say to someone you care about who is struggling.”

New artist – Emma Gates

Like many artists I admire Emma Gates is dyslexic, and as she explained to me that means she struggles to express herself successfully using the written word. However, she is able to use visual art, in particular photography to explore narratives and tell stories, as well as documenting her life.

Emma studied for her photography degree at UCA as the world left the 20th century behind from 1999-2002 and then returned ten years later to do her masters. One ongoing conversation that Emma recalls from this period in education was about being a photographer versus being an artist that uses photography – a distinction that she feels is unnecessary. As she told me “I don’t think there is a difference really, just in other people’s perceptions of what you do. I hate the question what kind of photography do you do? So to be an artist gives permission to make without boundaries.”

As I’ve found with many artists, including myself, Emma prefers making projects of her own volition and avoids doing commissions, as she finds the process of working to someone else’s agenda creatively stifling. “I have a compulsion to record and document things that happen to me and things that interest me.” Gates’ work is intimately personal and derives its power from this, two of the projects that struck me most were about the death of her mother and the birth of her first son, which it turns out happened during the same academic year of her MA.

Christine - Paris, April 1995

Christine on a donkey - Santorini, Greece, 1995

Emma is showing as part of MEDWAY OPEN STUDIOS 2017

EmmaGatesThe Shed, The Tack Room, Hulkes Lane, Rochester, ME1 1EE
Map No. 17 / 
Wheelchair accessible? No
Although initially this body of work appears to be about men and their opinions, it becomes apparant that the work is about the control, risk and vulnerability of the lone female photographer. All explored against a backdrop of unexpected trust that is formed between artist and models.
Sat 15: 10am – 5pm, Sun 16: 10am – 5pm, Thurs 20: 12pm – 8pm, Fri 21: 10am – 5pm, Sat 22: 10am – 5pm, Sun 23: 10am – 5pm
emma@emmagates.co.uk / www.emmagates.co.uk / 07944 699 723

 

Australia’s first dementia friendly airport takes off

Alzheimer’s Australia has named Brisbane Airport as Australia’s first dementia-friendly airport with the launch of an airport guide for travellers with dementia.

Brisbane Airport has been named Australia’s first dementia-friendly airport (Source Brisbane Airport)
Brisbane Airport has been named Australia’s first dementia-friendly airport (Source Brisbane Airport)

Ensuring a Smooth Journey: A Guide to Brisbane Airport for people living with Dementia and their Travel Companions is a step-by-step guide of the airport. It identifies the international dementia friendly symbols and takes users through the different airport zones.

The guide also outlines what to expect in the bag screening area, duty free regulations, customs, quarantine, transfers and immigration, and includes advice from people who have dementia and those who travel with them.

The Queensland University Technology-based Dementia Centre for Research Collaboration: Carers and Consumers (DCRC-CC), who developed the guide has been working with the airport since 2015 to improve the experience of air travel for people with dementia.

“Close to 47 million people worldwide live with dementia, including more than 413,000 Australians, but many still travel. Until now, no guidelines for dealing with such passengers existed for airlines, airports or carers,” says Professor Beattie, Director of the DCRC-CC, adding a previous DCRC-CC study found the most challenging part of air travel for people with dementia was managing at the airport.

Suggestions in the guide include visiting the airport beforehand to become familiar with the layout. “It can also be helpful to do a trial run with a short trips,” says Prof Beattie. “Another good idea is to plan flexible stopovers to allow gradual adjustment to different time zones. Even the choice of seating can be helpful.”

Julieanne Alroe, Brisbane Airport Corporation (BAC) CEO and Managing Director, says the resources kit would complement Brisbane Airport’s existing Disability Access program and be integrated into customer service training for airline staff and other airport workers, including retailers, security, cleaners and volunteers.

Professor Beattie also hopes the guide and staff training material can be adapted for use in other airports in Australia and worldwide, and in other formats, such as a mobile phone app.

A step-by-step guide takes users through the different zones of the airport (Source Brisbane Airport)

Alzheimer’s Australia CEO Maree McCabe says the Australian-first is a major step forward in making Australia more dementia-friendly. “Australia’s first dementia-friendly airport is a fantastic achievement and Alzheimer’s Australia congratulates everyone who has worked to see it become a reality,” she says.

“People living with a diagnosis of dementia can still enjoy travel, and may require some extra assistance to do so. This guide is fantastic in enabling people living with dementia and their carers to continue to do the things they enjoy, like travel, while assisting in navigating the airport, preparing and planning for travel.”

Ms McCabe points out no matter the size of the organisation, dementia-friendly principles could be achieved.

“Dementia-friendly may include changes to design, layout, signage and way finding or education of staff to be able to recognise and better assist a person living with dementia,” she says. “We expect this is just the beginning and look forward to working with many more organisations, large and small, to think about how they can become more dementia-friendly.”

The guide can be accessed online at the Dementia Centre for Research Collaboration as well as Brisbane Airport Corporation.

[original article: https://www.agedcareguide.com.au/…airport]

Eleven sketches inspired by the university mental health crisis – in pictures

The number of students dropping out from degree courses due to mental illness has increased significantly in recent years. Illustrator and student Ella Baron captures the experiences of 11 undergraduates

Data shows record 1,180 students who experienced mental ill health left courses early in 2014-15, up 210% from 2009-10

Symptoms of PTSD and Trauma

symptoms-of-ptsd

Avoidance behavior

Is very much related to procrastinating on giving full attention to the close (at hand), in favor of something that is less immediate. Avoidance behavior is likely to involve a certain sense of trepidation in coming face to face with ‘oneself’. This action may relate directly to an inner state of enigmatic perplexity or through association.

Victimization

When Post -Traumatic Stress Disorder has not been resolved, a mind-set of victimization can persist, even long after the event. You will see, quite often, that this role of ‘the victim’ is played out as a well structured character in order to attract attention, and doesn’t necessarily connect with the actual crisis moment. Keep in mind though, that at the core of this mindset, there is emotional residue at play due to Post-Traumatic Stress Disorder. Having been hurt in the past makes a person vulnerable to further hurt later on in life.

Flash-backs and Nightmares

Flashbacks are intrusive thoughts and memories that bring those suffering from Post-Traumatic Stress and PTSD face to face with fraught, overwhelming feelings of fear and helplessness. In theory, this is consciousness trying to come to terms with what is alive in the system. Unfortunately, in practice, it often leads to further psychological darkness and withdrawal symptoms. Nightmares related to PTSD are flashbacks in the dream state.

Chronic Pains

Post-Traumatic Stress Disorder and physical pain very often go hand in hand. When stress, as a result of trauma is unresolved, it settles in the body’s tissues which results in leaving residual patterns of constriction. We have also determined this as: a trauma vortex or energy cysts. These constriction patterns can be the cause of physical discomfort in themselves or take up so much energy that it will inhibit proper functioning of other systems in the body – think of the immune system, nervous system and/or digestive system. The most common chronic incidents of pain related to PTSD are in the joints, fibromyalgia and headaches/migraines.

Panic

Panic attacks go a step further than anxiety attacks do. They are often triggered by events or circumstances that are associated with past traumatic experience. This can be either on an unconscious level or consciously experienced with intrusive and overwhelming thoughts and feelings derived from past incidents. This often results in a variety of obsessive coping behavior and/or addictions. Think of: people avoidance, excessive (hand) washing, house cleaning, or substance abuse.

Emotional flooding

When emotion becomes too intense to be contained, or when there is a mixture of emotions emerging simultaneously. This can happen during or after the onset of trauma. Caution is advised for when this might happen during the therapeutic process, as it could easily lead to overwhelming emotional convulsions and possible re-traumatization. Crying, per se, doesn’t necessarily indicate that a person is in a state of uncontrollable, overflowing emotion.

Lethargy

PTSD causes a breach in the normal flow of energized resilience, within the nervous system. It will often lead to hyper-activation followed by a ‘breakdown’ when exhaustion starts to set in. Lethargy can possibly be related to the state of ‘breakdown’ of the nervous system. A person suffering from PTSD may well linger in this state in order to avoid dealing with high activation and associated feelings caused by trauma.

Exhaustion

Post-Traumatic Stress, be it developmental or PTSD, takes up enormous amounts of energy. It is like an identity that needs to be constantly fed to keep itself alive. In time it can become a mindset that contributes to the avoidance of the underlying emotional turmoil. No amount of sleep will remove the feeling of exhaustion as its cause is on a mental-emotional level.

Denial

Denial is clearly a coping mechanism to avoid dealing with the emotional strain of Post-Traumatic Stress Disorder. Unfortunately it often becomes a ‘conditioned response’ mindset, a habit, and will be used not only when there is association with past traumatic incidents but throughout everyday life and social interactions.

Severe Somatic Reactions

Chronic pain is already a severe somatic reaction. Looking deeply into the affects of Post-Traumatic Stress Disorder, these can contribute to a wide variety of physical conditions. To name a few: heart attack, stroke, organ dysfunction, auto-immune diseases etcetera. It’s epidemic, if you ask me!

Dissociative Identities

Is where the dissociative behavior, as a result of trauma, takes on a life of its own. The separation becomes so marked as to give off the appearance of separate identities taking control.

Hysterical Seizures

Considering PTSD – it is extreme internal conflict that results in the overwhelming of the nervous system resembling an epileptic seizure. It can be equally marked by: convulsive shaking tremors and an inability to communicate with others. Shock and the processes of trauma can also have some of these symptoms, but is definitely to a qualitatively different degree.

Self-Righteous Behavior

PTSD entails a breakdown of one’s identity through feelings of overwhelming helplessness. There is a deeply felt sense of loss of boundaries and containment. To compensate for that, or attempting to reclaim a sense of self, there can be the acting out of self-righteous behavior.

[original post: https://rolandbal.com/symptoms-of-ptsd-and-trauma-part-1/]

The US beauty queen making her invisible illness visible

Victoria poses in an open ball gown showing a 25 inch scar from her surgeries down her spine
Victoria poses in an backless ball gown revealing her surgery scars

“It’s not easy to stand on stage in a bikini in pageants. I have a 25-inch scar that runs down my spine.

“And people can see it… like, really see it.”

Victoria Graham, a 22-year-old student from Manchester in the US state of Maryland, had an untraditional journey into the glitzy world of US beauty pageants.

She may look like any other contestant at first glance, but Victoria has Ehlers-Danlos Syndrome (EDS) – a rare genetic condition that affects her connective tissues.

Recalling her first competition, she says: “I walked into orientation in a neck-brace, surrounded by all of these gorgeous sky-tall women.

“I looked to my Dad and asked ‘What in the world am I doing here?’… It was comical.”

As part of her role, Victoria visits children in hospital

Victoria wasn’t always so open about her condition. “Until I left school at 19, I hid my illness from others,” she says.

“I would rather have my legs dislocate than someone see me in a knee brace.”

But she’s since realised that speaking out makes her feel empowered – and enables her to help others in the same situation.

‘My injuries weren’t normal’

Victoria grew up practising gymnastics and was told she was “too flexible” by her coaches.

She became aware something was really wrong after a gymnastics accident when she was 10.

“I’d get injuries that weren’t normal – things weren’t adding up,” she says.

Victoria Graham in her latest pageant
Victoria’s platform is ‘But you don’t look sick? Making invisible illnesses visible’

EDS is notoriously difficult to diagnose, and she spent three years seeing different specialists, trying to pin down the problem.

Eventually her family found a geneticist who gave her a diagnosis aged 13.

“It was weird because although there’s no treatment and no cure, we were ecstatic because we finally had a name for what was going on,” she says.

In the family

It then became apparent that Victoria’s condition was inherited – only then did her mother, brother and other family members find out they also had lesser forms of EDS.

“My grandmother lived with EDS for nearly 70 years without knowing and my Mom had it 40 years.

“Nobody should have to live that long before finding out what’s going on with them,” she says.

Victoria pictured when she was young, with her mother who also has a form of EDS
Through her diagnosis, it emerged her mum, Mary Beth, also had a less severe form of the condition

Over a two-year period from 2014, Victoria had to undergo 10 operations on her brain and spine.

“I’m fused from skull to my bum – all the way down,” she says. “Because I was able to move so much before, the vertebrae were dislocating themselves.

“I have a limited range of motion now, but I need to be stiff so my brain stem isn’t under pressure and my spinal cord isn’t being crushed.”


What is Ehlers-Danlos Syndrome?

  • Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue
  • Connective tissues act like a ‘glue’ to support the skin, tendons, ligaments, blood vessels, internal organs and bones
  • Victoria has a severe form of EDS which means she has cranial and spinal instability
  • She also lives with dietary limitations because of how her condition affects her internal organs
  • For more information go visit the Ehlers-Danlos Society website

Victoria’s EDS affects a lot of aspects of her body, including blood flow.

She says she has to take 20-25 tablets every two hours. Some are for pain relief, but others are supplements to ensure her body keeps functioning correctly.

“I know plenty of girls who are in a near similar situation as me medically who are bed-bound, but I believe lifestyle has a lot to do with your attitude and how you view your situation.”

Victoria leaps into the air in front of the ocean
Despite her condition, Victoria has been able to live an ordinary lifestyle

Despite the severity of her condition, Victoria finds herself often dismissed and discriminated against because of the invisible nature of her illness.

At school she consistently struggled with teachers’ unwillingness to make accommodations. And she says she often gets shouted at in public for using a disability parking pass.

As part of her efforts to raise awareness and educate people, Victoria now performs a monologue about her condition at pageant competitions.

She says she entered her first competition as part of a ‘bucket list’ deal with a friend after an operation.

Victoria Graham holds a sign saying 'I have an invisible illness' in her pageant crown
Victoria talks about her condition at the competitions

She won her first local title just months later and now holds Miss Frostburg – a local title within the Miss America Organization.

Through this platform she has been able to meet and support other people with EDS.

“Its not always easy, sometimes you want to be normal – you don’t want to be that girl with those scars on stage,” she says.

‘Medical Zebra’

Despite being only 22, Victoria now runs her own non-profit EDS support group called ‘The Zebra Network‘.

“I was seeing people who were struggling – doctors were often recommended through word of mouth.

“I saw a dire need for a network of sufferers and for someone to dedicate their life to that” she says.

A group of EDS sufferers and supporters hold 'zebra strong' plaques
She says her group’s goal is to have a global EDS support system

“I know I’m young and its a bold decision to make without a college degree – but if someone else wasn’t doing it, I would be that someone.”

She explains the network’s name: “In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ‘When you hear hoofbeats, think of horses not zebras.’

“So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ‘medical zebras’.

“So we say, ‘Think zebras, because zebras do exist’.”

Despite her confidence now, its been a fraught journey to this point for Victoria.

Victoria Graham in a hospital bed, showing her IV line and in a head brace.
Victoria had to undergo ten major operations within two years

At Eastern University in Philadelphia, she was on the soccer and lacrosse teams, but was forced to move colleges to a more flexible programme because of her operations.

She says she also lost friends as she went through so many procedures.

“Maybe my illness is something they can’t deal with or put up with,” she says. “I don’t know what the reason is.”

She also describes having relationships with boyfriends suffer.

Victoria Graham in her lacrosse uniform at Eastern University, with her parents
Victoria played soccer and lacrosse throughout school and college.

“I try to be very understanding and not take it personally,” she says.

“You have to think of the other side of things. I think that’s one of the ways I’ve been able to combat the negativity.

“If people are able to be empathetic to my situation in the same way – by recognising some illnesses aren’t as obvious as others – it would make it a lot easier.”

[original story: http://www.bbc.co.uk/news/world-us-canada-39331416]

London Underground Sign at Kilburn Station Explains Invisible Illness to Passengers

For people living with an invisible illness, communicating that you to need to sit on a crowded public train or bus can be difficult if you look perfectly healthy. Fortunately, a sign posted in the Kilburn Station of the London Underground explains what passengers may be missing when a seemingly healthy looking person asks them for their seat.

The sign reads:

Please offer me a seat.

Our baby on board wearers all like to rest,

The old and less abled are put to the test,

But it isn’t just them, there are many cases,

Different people, different races,

Moving in pain and wearing a frown,

It might help them out greatly by just sitting sitting down,

But why would you want to give up your seat,

To someone who looks quite well and complete,

Some people have issues you just cannot see,

So don’t make them ask and don’t make them plea,

Please make an effort and please be aware,

Show them respect and show them you care,

Stand up and be counted, you’ll do a good deed,

Give up your seat to someone in need.

17835229_1849011218458259_5221299355764171701_o

Transport for London (TfL), London’s department of transportation, has been trying to make public transportation more accessible for those with invisible conditions. This past September, TFL introduced a badge trial program for people with invisible disabilities.

“We appreciate that asking for a seat on public transport can sometimes be difficult, particularly for customers who have hidden disabilities or conditions. That is why we are launching this trial,” Mike Brown, London’s Transport Commissioner, said in a statement published by the TfL.

The badge, which reads “Please Offer Me a Seat,” was initially offered to 1,000 London travelers. An expanded program will be launched this spring.