‘My dad was the most positive person I knew, but he took his life’

‘My dad was the most positive person I knew, but he took his life’

84 British men commit suicide every week: Beth Campagna, founder of Mama Life London, opens up about her father, John, who took his own life in 2011

commit suicide

‘I heard if they talk about suicide they won’t do it.’ said a concerned friend of mine after her friend confided that he’d been having suicidal thoughts. This of course is a dangerous myth, a myth that I wish was true.

Seven years ago, on the 25th of June, my dad took his life. I can’t explain the sickening feeling when the paramedic broke the news. Words are powerful, but no words are a match for the tumbling of your world.

Beth, her dad and her sister circa 1986

The fear that he would one day fulfil his own prophesy was now real. The thoughts he shared privately with us were true. Two weeks earlier, we were all enjoying a family holiday in Ireland. It was his treat to us all ahead of his 65th birthday. It’s with the benefit of hindsight that I realise it had been organised by him as a final hurrah

The first evening in a remote pub on a peninsula in County Cork we had an amazing glimpse of the care-free man we knew. He loved to sing and joined in with the locals and the band as they belted out traditional Irish music. That night my husband asked my dad’s permission to marry me and for a few hours, in that bubble of fun and happiness, it felt as though things could be fixed.

However, dad was suffering with chronic insomnia. When he got back home his mood shifted, as the fear of hours without sleep stretched ahead of him. That holiday there were occasional moments when he looked completely lost in dark thoughts. His light was slowly being dimmed.

Beth’s dad in 2010

The positivity my dad had always pumped into me, the importance of self-belief and having a positive outlook is the tact I thought was best to take with him. I bought him a ‘Happy Book’ to journal the things he did in a day that made him happy, I wrote my own list of all the things for him to be happy about and told him how much everyone loved him. When he slipped into his really dark thoughts I would hit him with the guilt stick: ‘I’m pregnant, you’ll meet the baby soon. What about Sonny? (my 10 month old nephew). It’s yours and mum’s Ruby Wedding Anniversary in September you could do something nice together.’ But it’s not until you help someone struggling through mental illness that you find out the ‘glad game’ doesn’t work with depression. It doesn’t change the dark thoughts in their head, it just adds an extra layer of guilt.

When we returned from holiday, we arranged for a counsellor to see him. The man told him in the session that he wouldn’t be able to help him, and so the isolation and loneliness deepened.

Beth (back row, second from left) and her family in Ireland, June 2011

Dad didn’t want us to tell anyone about his battle with mental health, he was ashamed and embarrassed about the stigma of it being an illness for someone with a weaker character. But how strong is the person who has to wake up everyday and face those constant battles?

On the brightest of summer days we shared our last cuddle and wave goodbye as he fell into the crippling trap of darkness.

My life after that was a mixture of the best and the worst times. Three days before my 30th birthday my son, Teddy, was born. He became my little light and saved me from spiralling into my own desolation.

As time went on my husband and I decided we wanted to try for another baby. But with no explanation we struggled to conceive for over two years. The strain of trying for a baby was beginning to weigh down heavy on me, it felt as though life was dealing me another bad hand. Then after two years, we finally had the good news we were waiting for, I was pregnant.

Beth (right), and her parents in Ireland, June 2011

We were so overjoyed. We went for an early scan, and as we waited we discussed the possibility of twins. As I lay on the bed the ultrasound technician looked concerned, he couldn’t detect the baby’s heartbeat. We were told I would have a miscarriage, which I did at 10 weeks.

Once again, my world came tumbling down. I tried to crack on and went back to work, but everyday I felt like I was shedding pieces of my old happy life I had before everything began falling through my hands like grains of sand. I didn’t smile as much, I didn’t feel truly happy anymore, I struggled to remember the last time I went a week without crying. I couldn’t focus at work and I took comfort in being at home with my son.

One day, I met my mum for a coffee and said that I noticed on my ovulation calendar that if I fell pregnant that month the baby’s due date would be my dad’s birthday, the 8th July. By a freaky coincidence I did fall pregnant that month, six months after my miscarriage, two and a half years after we first tried.

On the 7th of July I went into labour, and the contractions were so strong and close together by the evening that we all felt sure the baby would be born that day. My daughter Isabella was born on the 8th of July, my dad’s birthday. From that night, the pain of the last four years began to slowly ebb away.


Beth (right) and her two children, Isabella and Teddy

Six years on from when my dad died, I finally felt prepared to embark on raising awareness on mental health issues. I completed the Three Peaks Challenge on the anniversary of his death, and in November 2017, I launched the slogan brand Mama Life London, which aims to raise awareness of mental health issues through blogging and donating money from the sales of clothing to the mental health charity Mind.

Improving people’s understanding of mental illness and encouraging a more supportive view is the driving power for Mama Life London. My dad’s determined mindset and my family’s experiences over the last eight years continue to inspire me to use the platform as a power for positive change. It can’t change what happened in my life, but there is the hope that it can support somebody else.

Mind’s Infoline is open 9am to 6pm, Monday to Friday on 0300 123 3393. For urgent medical advice, call NHS 111.

The post ‘My dad was the most positive person I knew, but he took his life’ appeared first on Marie Claire.

Transform your smile with the best tech innovations in cosmetic dentistry

Transform your smile with the best tech innovations in cosmetic dentistry

Want perfect pearly whites? New technology is transforming the cosmetic dentistry landscape. Here, the UK’s top dentists reveal the most innovative treatments on the market

Get a perfect smile with the latest tech in dentistry

We Brits were once famous for having the worst teeth in the world. Not any more. Thanks to a new wave of tech, the UK cosmetic dentistry market is booming. The industry was valued at more than £2 billion in 2016 and is predicted to increase by up to 4.2 per cent each year until 2021*. Dr Neil Counihan, who qualified in New York as a specialist, says he has seen huge shifts in both technology and attitudes. ‘Brits, especially those in their twenties and thirties, know much more about ageing and longevity. They recognise that your teeth have a massive impact on your confidence and sense of self.’

And it’s not just orthodontics progressing at a pace. Dr Mark Hughes, who founded Harley Street Dental Studio, says: ‘Like medicine, dentistry is a technology-driven profession with more innovations materialising by the week. Digital photography is the big one. It enables us to explain conditions and treatment options to patients with more clarity via Google Slides and Loom. Digital scanning means treatments are efficient, effective and less invasive than before.’

For Rachelle Kyriacou, 24, new-gen tech has given her a confidence reboot in just two weeks − in the form of veneers. ‘Before, my teeth’s edges were jagged and dark, so I hid my smile,’ she says. Rachelle was treated by Dr Mervyn Druian over two weeks and had porcelain veneers created to her specification. ‘Now I smile without feeling self-conscious,’ she says. ‘The change in my confidence is massive.’ Lucy Wills, 32, is having Invisalign orthodontic treatment for similar reasons. ‘My top teeth used to stick out and cross over,’ says Lucy. ‘I’m halfway through treatment, and watching them straighten has been a boost.’

With more women than ever coveting an Insta-smile, we asked three of the UK’s top dentists to talk us through the latest innovations.

Rhona Eskander is a multi award-winning dentist and winner of Best Young Dentist at The Private Dentistry Awards 2016. She has been practising for seven years and 
is based at the Chelsea Dental Clinic in London.

What’s new? ‘The Philips Zoom system in-clinic and at-home whitening kit. For home whitening, you start with a consultation with your dentist. If you’re prescribed 
a treatment using bespoke whitening trays, your dentist will use moulds to create them. The trays are then dotted with a special Zoom whitening gel, which can be worn either in the day [30 minutes twice a day] or at night [for four to six hours] with results within two weeks. The gel has an anti-sensitivity component to avoid common side effects of teeth whitening – sensitivity and gum irritation. The in-clinic version uses an additional LED light to accelerate whitening, so the results are faster – you can achieve up to six shades lighter in just 60 minutes. This chair-side treatment costs £600-700; at home it’s around £300. Recently, a third tier has been added − Zoom QuickPro (from £150). This is a simple two-layer process that can be done at home and doesn’t require trays. Your dentist applies a hydrogen peroxide whitening varnish to the teeth, which is topped by an innovative sealant layer that locks the hydrogen peroxide layer into place. The patient simply paints on the two layers at home, waits 30 minutes, then brushes it off. This four-day treatment whitens teeth by up to four shades.’

Why it works: ‘The Zoom whitening gel’s amorphous calcium phosphate formula provides better sensitivity control and enamel protection than traditional systems, which relied on higher levels of hydrogen peroxide. Plus, in the past, providers weren’t regulated as they are now, so there were cases of burnt gums.’

The small print: In 2012, legislation changed. It’s now illegal 
for under-18s to whiten their teeth. For over 18s, treatment must 
be carried out by a qualified dental professional. Salons and beauticians are no longer allowed to provide or carry out tooth whitening unless they’re a General Dental Council registered professional. The legal amount of peroxide has also changed. It is now legal to use six per cent hydrogen peroxide or 16 per cent carbamide peroxide, whereas in the past it was more. Teeth can be discoloured for a number of reasons, so check with a dentist before whitening.

Dr Mervyn Druian has nearly 30 years of experience and is an award-winning practitioner. He was the first to introduce porcelain veneers 
to the UK and counts former prime ministers and A-list celebrities among his client base. He founded and works out of The London Centre of Cosmetic Dentistry.

What’s new? ‘I can hardly believe the technology that is available today. New porcelains include E-Max and Zirconia, which are extremely strong, so you can create very thin veneers − this makes a huge difference to the visual effect that can be achieved. Technology has also made veneers more predictable. Before, the porcelain was not particularly strong and you had to take away a fair amount of the tooth before applying. Once installed, veneers were far more likely to chip, too.’

Why it works: ‘Recent advances have transformed the process. Today, very little prep has to be done. A patient coming to see me for veneers − that would be someone with very dark stained teeth who has already tried bleaching and every other whitening method available − would be examined by a dentist and hygienist to ensure the mouth is in perfect health. Once we’re happy, we scan the mouth and teeth. Advances in scanning mean the dimensions are very stable and more accurate than the impression created using a mould. The scan goes straight to the laboratory so that I can discuss options with the patient while the scan is analysed in front of them. This means veneers are personalised and can be produced more quickly with natural-looking, longer-wearing results.’

The small print: Veneers can be a one-off treatment, but it depends on the quality of the product and how well you care for your teeth. 
The cost is between £700 and £1,200 per veneer.

Dr Neil Counihan is a leading orthodontic specialist who trained in the UK and the US, and specialises in non-extraction, pain-free treatment at Metamorphosis Orthodontics.

What’s new? ‘Since I qualified as an orthodontic dentist 15 years ago, I’ve seen an explosion in adults, particularly in their twenties and thirties, getting braces. My philosophy is that I don’t like taking healthy tissue out of a healthy human. But using the latest technology I can use a non-extraction phase-driven approach. Also, traditionally, braces had elastics wired into the bracket; these were hard to clean as they would fill with saliva. Today, the lighter, smarter design means less pain and less intrusion.’

Why it works: ‘With Damon, a high-tech low-friction system, braces are far less painful, less obvious and work faster. Entry price starts at around £3,000 − so, not much more than traditional train tracks. The self–adjusting Damon system is attached to the teeth through a series of brackets made either from plastic 
or metal in a process called binding. Each bracket is placed on the tooth with a different degree programmed into it, so that it pulls at the perfect angle. Then the wires we attach to the brackets have a shape memory and are super elastic so they can curl into crooked teeth, and are activated by the temperature of your mouth. They can then gently move teeth through the bone into the right position.’

The small print: You can use braces at any age, but they’re not suitable for patients with weakened gums or poor dental health. Average treatment time is around two years, depending on how much work needs to be done.

Talking points
Thinking of changing your smile? Here’s how to do it safely

A rising number of Brits go abroad for cheaper treatments. If you choose this option, do your research first. 

Make sure the practitioner you choose is registered to an internationally recognised and approved body, such as the General Dental Council or Royal College of Surgeons of England.

Before using a home-whitening kit, see your dentist to check you have 
no contraindications such as weak enamel or gum disease. Beauticians offering whitening treatments can only legally do so if they are a General Dental Council (GDC) registered professional. 

Your teeth naturally move closer together as you age, so keep this in mind before getting braces; you might hate that gap between your teeth now but, in a few years’ time when your teeth aren’t fighting for space, you might be grateful for it.

*According to market research company Mintel

The post Transform your smile with the best tech innovations in cosmetic dentistry appeared first on Marie Claire.

Why you need to take charge of your data

Why you need to take charge of your data

The real price we pay for social media is being constantly tracked and having our personal data harvested. Alix O’Neill attempts to reclaim 
her privacy online

Facebook personal data
Mandatory Credit: Photo by Alex Segre / Rex Features (1089880bq)
Facebook on Apple iPhone 3Gs

Poor Mark Zuckerberg is having a rough time. Even before the scandal that rocked his digital empire earlier this year, younger users were getting Facebook fatigue. In February, eMarketer predicted that more than 3 million under-25s would either quit or stop using the platform regularly in 2018. Just a month later came the Cambridge Analytica (CA) furore, when an undercover investigation revealed the company (now closed) had inappropriately collected data from 87 million Facebook profiles – and used it to influence voter opinion in the US general election.

I lost interest in Facebook when my newsfeed started to feature nothing but babies and Brexit rants. But I’m obsessed with Instagram, which, like WhatsApp, is also part of the sprawling Zuckerberg empire. When an acquaintance asked me about a recent trip to Paris and enquired after my son (who she’s never met) it made me question how much of my life I was putting out there – and how this personal information might be manipulated. Social media is supposed to be about connection and community, yet our online identities are being used for political and commercial gain. But is deleting Facebook the answer? With its global reach extending beyond the original network, it seems impossible to fully disengage. 
We can, however, be savvier about what we share.

How do companies exploit data?

In 2014, 270,000 people used an app, This Is Your Digital Life, on Facebook to take a quiz. Disturbingly, this information was used by CA to build psychographic profiles of voters in the US. ‘Every time you logged into Facebook, played a game or took a test or survey, some of your data was harvested by a third party,’ explains Eva Blum-Dumontet, of the charity Privacy International. ‘Many companies then sold or shared that information. For the majority of people, their data ended up in Cambridge Analytica’s hands, 
not because of anything they clicked on or agreed to but because their friends downloaded the app.’

Our online behaviour is monitored 24/7, as advertisers develop new methods to exploit the cookies system. That Rixo dress you checked out? Expect it to stalk you around the web for the next six months. ‘Companies use data to invisibly manipulate, influence and persuade,’ warns Blum-Dumontet. ‘If you’re worried that Facebook apps have harvested user data, you should be more concerned about the way in which data brokers are tracking and profiling you. They can learn about your habits, personality, sexual preferences, political beliefs and more.’

Should I delete Facebook?

The social-media giant has clamped down on how much of our information is passed to third parties, but that didn’t stop a huge online campaign to #DeleteFacebook. Surprisingly, the user exodus failed to make a dent in Zuckerberg’s pocket. He was $3 billion richer after being grilled by Congress on the company’s role in the scandal. Clearly, the world’s largest social network isn’t going anywhere any time soon. ‘It was poor practice that Facebook relied on CA’s assertion that it had deleted the data,’ says Kate Bevan, editor of Which? Computing. ‘But, realistically, they can’t police every third-party organisation that works with data on its platform.’ The violation of personal information is just one of the worries, says Bevan. ‘I’m more concerned about Putin’s troll army and fake news factories. These tools in the hands of the unscrupulous are powerful.’

Instead of deleting your account, Bevan suggests making it more private. Ensure your posts are set to ‘friends only’ and change your settings so you have to approve tags with you in other people’s posts. Also, if you are admin of any groups, make them closed or secret. On Bevan’s advice, I check my settings. I’m already on ‘friends only’, but shocked to discover that anyone can access the email address and phone number I provided when setting up my account. But there doesn’t seem to be an option to keep them private – at best, I can choose ‘friends only’. I’m not sure I want the rickshaw driver I added to my network after a drunken night out years ago to have my number, but there isn’t much I can do.

It’s easy enough to make my groups private. I’m surprised how well Facebook knows me. Recommended groups include the Kate Bush Fan Club (my secret party piece – interpretative dancing to Wuthering Heights – not so secret) and one for motorhomes fans from my days as an intrepid caravan journalist. I can’t decide whether this is helpful or creepy.


Facebook’s Mark Zuckerberg: public enemy number one?

Can you recall any data that’s already out there?

A subject access request (SAR) to Facebook allows you to find out which organisations have targeted you or scraped your data without your consent via a friend. You could then do SARs to each of those companies to find out what info they have and insist they delete it, says Bevan. ‘Companies are required to only hold on to relevant data. So if you’ve told a charity you’re cancelling your membership they have to remove your contact details and can’t email you in six months’ time asking if you want to rejoin,’ she says.

Facebook calls SARs ‘personal data requests’ and gives you instructions on how to download them. It seems simple enough. I click the arrow at the top right of my profile page, choose ‘Settings’, select ‘Your Facebook Information’ on the left-hand side, and then ‘View’ next to ‘Download Your Information’. From there, I can create a file with whatever info of mine I select. Hopefully, we might not need to take matters into our own hands. New European data-protection laws that came into force in May are likely to kill third-party data over time. Under GDPR (General Data Protection Regulation), consumers must be presented with clear terms for how their personal data is used – and a box they can tick to opt out. Tough punishments will be given to companies that fail to comply with the new rules.

How do I clean up my data footprint?

Review your privacy and advertising settings, not only on social media but also on your phone, advises Blum-Dumontet. If you have an iPhone, go to your settings and select ‘Privacy’ to decide which data your apps can use. Under ‘Advertising’, you can limit ad tracking. There are also Safari settings to block cookies and ask websites not to track you. Also consider using ad blockers like Ghostery and AdBlock, advises Blum-Dumontet.

It doesn’t take long to go through my phone. I turn off my location services and opt out of receiving ads targeted to my interests. So far, no one has tried to flog me a second-hand caravan. It feels good to take control, but I worry it’s not enough. ‘Ultimately it should be the companies’ responsibility to protect their users,’ says Blum-Dumontet. ‘Why should we have to be technical experts to ensure that third-party companies don’t exploit our data?’


How clean are your apps?

Adjust your phone settings

Kate Bevan’s top tips on how not to be a target

Review your public profile
On your desktop Facebook profile, click the three dots next to ‘Activity Log’ at the bottom right of your cover pictures, then ‘View As’. One of those is public, and you’ll see what non-friends can see if they look at your page. All your profile and cover photos are public, so go through your photos and make all of those you’re not using private. Check what else is visible: your date of birth, location, job title, etc. Those 
are the data points that CA scraped via your friends.

Quit quizzes
These tell the maker of the quiz a lot about you and help advertising providers build profiles of the population. I freaked out a girl on a friend’s thread by telling her her date of birth, which was easy to work out from the quiz they were posting their results to. That kind of thing is a gift to identity thieves.

Check which apps you’ve authorised
Many of these quizzes are actually apps and give the maker of them a lot of access to your data. Delete any you don’t need.

Limit your ‘likes’
Check what you’ve liked in the past and unlike as many of them as you can. Try to limit your interaction with brands on Facebook because many of these interactions are public.

Be selective with friends
Look at how people can find you on Facebook. (Are you visible to search? Can people find 
you by searching your name, your email address or phone number?) Check that you’re not continuously uploading your contacts to Facebook via the Android or iOS app by turning off ‘Continuous Contact Upload’.

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‘What it feels like to be locked in your body and only hours from death’

Following a sudden bacterial infection, scientist and mother of three Rikke Schmidt Kjærgaard was hospitalised after becoming locked in her body, and only able to use her eyes. She reveals how the love of her family and a steely determination to survive helped her recover against the odds

Rikke Schmidt Kjærgaard was locked in her body

When you come out of a coma, there is no Hollywood moment. It’s not like you wake up one day and ask yourself, ‘Where am I?’ After spending two months unconscious, it’s a very slow process to fully come to. For me, it started with opening my eyes very slightly. I couldn’t fathom what was going on and didn’t have the energy to think about it. For the first few days, I would open my eyes for ten seconds, then doze off again for two or three hours. I couldn’t make out anything in the room except blurred objects and distant voices. It was like being half asleep.

It all started when a totally unexpected bacterial infection resulted in a violent attack of meningitis, causing multi-organ failure, septic shock and paralysis. 
In the days leading up to becoming ill, I’d been a working scientist and healthy mother-of-three. Then, suddenly, I was ‘locked in’ – I could see and understand everything that was happening around me, but couldn’t respond.

There had been no indication this was coming. It was just before Christmas and there were lots of things to do before finishing school and work for the holidays. I’d been juggling several research applications for my work in medical data visualisation, and had back-to-back meetings at the university where I was teaching students about this research, so I felt a bit more stressed than normal. But when I started to feel shivery on New Year’s Day during a walk with my husband Peter and my children, I thought I was coming down with a cold.

After a while, I became really chilly and told Peter I needed to go home. I ran a bath but was still so cold, it felt like I was lying in ice. I knew something was coming but, at this stage, I just thought it was flu. I asked Peter to get me some blankets and went to bed. However, after a few hours, the fever hit and I started sweating and losing consciousness, and then throwing up. 
At first, when the GP came to visit me, he thought it was flu, but my condition got worse. So, the following morning, when another doctor visited, he called an ambulance. It had only been 12 hours since I’d started shivering. In the ambulance on the way to the hospital, I fell into a coma and was declared clinically dead. The next thing 
I knew, I was in a dark place, an abyss of loneliness, a living nightmare. I could hear and see my family moving around me, but wasn’t able to communicate with them at all. As 
I would later learn, hundreds of blood clots had shut down the circulation in my body and a large haematoma had developed in the frontal lobe of my brain where movement, intelligence, behaviour and memory sit. For two weeks, the doctors had thought I was going to die. Peter was told to prepare himself to turn off the ventilator and organise my funeral. Our children were brought in to say goodbye – but I refused to let go.

As a scientist, I was aware of what being ‘locked in’ was, but it didn’t help rationalise or make sense of the situation. Lots of thoughts went through my head in that two-week period as I drifted in and out of sleep. But the overwhelming feeling was fear. I was really scared this state was to become the rest of my life, that this would be it. I thought I’d be confined to a life of paralysis, not being able to communicate or move, just lying there dependent on others and never hugging Peter or my children again.
It was a terrifying time for my children, seeing me in that state, although they each took it on different levels. The 18-year-old, Johan, was convinced I was going to 
die. Victoria, 14, decided not to sleep because she didn’t know if I would be there tomorrow. Daniel, the little one, couldn’t talk about it. Even now it hurts him too much.
When I began to come out of the coma, it took a week to fully wake up. When I was conscious I remember looking up and seeing Peter and a friend of mine standing at the end of my bed. My short-term memory had totally gone. I slipped back into sleep, but then every time I woke up I had to have everything retold to me – where I was and what was going on. People couldn’t tell whether or not I could see or understand them. Peter was the only one who really believed I could. A nurse told me I could blink once for ‘no’ and twice for ‘yes’, and that’s how I began to communicate.

The whole thing was very painful – both mentally and physically. Even now, five years on, it’s difficult to describe. 
I took a lot of painkillers, but I’d get stuck in odd, painful positions and I couldn’t say anything. The mental pain was not being able to communicate. Humans are social animals and we want to engage with people. If you can’t do that, it’s a terrible feeling.

The first time I remember seeing my children again was a couple weeks after waking up from my coma. They were all trying to make me laugh. I still couldn’t communicate with them, but I recognised that they were attempting to lift my mood. The first word I said after months without speaking was ‘weird’, which just summed it up really. It’s just really weird lying there not being able talk. All my family were there to hear me say it and it was a special moment when they all laughed. My daughter responded straight away, saying, ‘It’s so you that your first word would be that.’

I had a five per cent chance of survival, and even then doctors thought it was likely I’d be brain-damaged if I did pull through. Streptococcus pneumoniae, the bacteria that caused my infection, is a regular one that most of us could have in us right now – picked up 
on the bus or in a supermarket – and normally we would just get a cold or, if you were unlucky, pneumonia. I was extremely unlucky. The reason I got so ill was also, as doctors discovered, because I didn’t have a spleen, which usually helps filter the blood. No one knows why. Peter was convinced I’d survive. He couldn’t fathom living without me and couldn’t go through what happened without believing I’d come out the other side as the person I had once been.

Today, I’m not exactly who I was before. I’ve had to learn everything again, including how to drink and eat without it going down the wrong tube. I lost weight, almost all of my hair, and most of my fingers had to be surgically removed because the septic shock from the bacteria caused blood clots, which stopped circulation in my extremities. 
I also lost the sight in my left eye. But, being a scientist and a positive person have helped me through when all seemed lost.

Facing the reality of death has transformed the way I see my life. Since then, I have learned to enjoy and appreciate everything that I’m able to achieve. I have used my scientific training to study the bacteria, and my personal experience to understand what it takes to fight for your life and your health – and how important it is not to lose control of your own recovery. Most importantly, I have arrived at a deep sense of gratitude for even the simplest things in life; how lucky I am to be here at all and to see my children grow up. I made the big decision to stop teaching and instead set up the Danish Science Club, a mentoring programme, with some colleagues. Life is precious and it was important for me to make my life and job reflect this. I now dedicate every single day to making the most of it for myself and for others.

The Blink Of An Eye by Rikke Schmidt Kjærgaard (£16.99, Hodder & Stoughton) is out now

The post ‘What it feels like to be locked in your body and only hours from death’ appeared first on Marie Claire.

‘We need to change the way we speak to women’ This exec is transforming advertising for the better

‘We need to change the way we speak to women’ This exec is transforming advertising for the better

Advertising executive Madonna Badger overcame the unthinkable to find a new purpose – championing women in a male-dominated industry


‘I started at Calvin Klein, where I organised the Marky Mark and Kate Moss campaign. At 29, I set up my own company, Badger & Winters, and worked on beauty and fashion accounts with almost every major designer. I married and had three girls: Lily, born in 2002, then twins Sarah and Grace, born in 2004. In 2009, 
I divorced my husband amicably and bought a beautiful Victorian house on the water in Stamford, Connecticut. However, in the early hours of Christmas morning in 2011, the house caught fire. My three girls, who were asleep on the top floor, died almost instantly. My parents, who were staying with me at the time, also died trying to save them. When I finally woke up, I climbed out of the window on to the scaffolding outside to try to get to the girls, but the smoke was so awful I couldn’t get in their room. After living with a friend for a year, I went back to the agency in 2013. I was trying to find a reason to be here. I kept thinking, “Why did I get left? Why am I here and what am I going to do?”’

‘Why did I get left behind?’

I had read about objectification, and the effect of advertising on children. When women and girls are objectified, they are treated as non-human – and objectification leads to self-objectification. You start to believe you’re never good enough, that you will never measure up. While working with some big beauty brands, my agency partner Jim Winters and I decided we would never objectify another person again, and we made a film called Women Not Objects, which launched in January 2016. We also came up with our own way of explaining objectification to other agencies. It included: don’t treat women as props, let them have their own narrative; don’t treat women as body parts to sell something; don’t retouch to the point of human unviability. The last point was about empathy. Once male creatives started mentally inserting their wives or daughters into ads (instead of a woman they didn’t know), it became clear. They said, “I don’t want my woman depicted that way”. Suddenly women are treated as whole, human and strong.’

It’s not as simple as blaming the advertising industry for being male-dominated. As a woman I also objectified other women early in my career − I didn’t know any better. I don’t think it’s fair to say that once we reach parity within an art department that all of this disappears. We need to reach parity because women are 50 per cent 
of the world, so not having women represented in creative departments is incredibly detrimental. We need to have views and discourse around everything.

‘Objectification exists – we need to take ownership’

When we blame, we become victims instead of people who have ownership of our own paths. With what happened to me after the fire, I understand there are victims in the world but the flip side of that is you have to take control or responsibility, and by being part of a mentorship programme, like the one offered by See It Be It – which is a Cannes Lions initiative that provides training, mentoring and exclusive networking opportunities for up to 20 girls from around the world – there are systemic changes we can make. As a mentor, it helps me to talk with young women about their struggles and their ideas. 
In the end, you have to become your own agent of change – no one else is going to do that for you.

That strength was something I already had. Before that point, I had been an abuse survivor and a recovering drug addict and alcoholic, so there have been many times when I couldn’t get up. But only I can choose how my life goes. And what I found is that helping young women helps me, too − it gives me hope.’

The post ‘We need to change the way we speak to women’ This exec is transforming advertising for the better appeared first on Marie Claire.

‘What I learned after a week of living sustainably as a micro-protester’

‘What I learned after a week of living sustainably as a micro-protester’

Could you live a totally sustainable life for seven days? Charlotte Philby joins the new wave of eco-warriors using daily protests to push for lasting change

Charlotte Philby's week as a micro-protester

‘You need to begin by doing a bin audit, so have a rifle through to see where most of your waste comes from,’ says Bettina Maidment, aka @plasticfreehackney. And she should know. Part of a new movement of eco campaigners who are making a big impact with their ‘micro-level protests’, Maidment decided to go plastic-free 18 months ago. In the process, the east London-based mother-of-two has so profoundly reduced the amount of waste her family produces across the board that they only take their rubbish out once every three months. It’s a seriously impressive achievement and one that has inspired me to follow suit.

The ‘micro-protest’ favours personal and corporate responsibility on a daily basis over large-scale stunts. In the past, group actions like those of Greenpeace’s Kingsnorth Six – a group of eco-warriors who famously scaled the Kingsnorth Tower in Kent in 2007 to protest against coal-fired power (for which they were arrested and later acquitted) – relied on making a noise in order to propel change. In contrast, the latest (and more accessible) trend focusses on small-scale individuals to make manageable, easy to mirror changes, which they often record online to galvanise others. Think of Antoine Repessé’s four-year project in which he saved all his recyclable rubbish then photographed it in surreal ways to highlight issues around waste; or the Kin Project, which suggests one monthly change you can make – from planting a tree to eating less meat – and then invites you to discuss your experiences in a ‘safe space’, a closed Facebook group; or the group of mothers from north London who clubbed together a week’s worth of plastic and returned it en masse to their local supermarket.

If I’m going to spend a week living by the rules of three environmental micro-campaigners, thinking about what I most commonly throw out is the place to start. But given that between me, my husband and our three young children we can create as much as four bin bags’ worth of landfill, three compost bags of food waste and four bags of recycling each week, it’s a somewhat daunting task.

Before now I considered myself an engaged, relatively eco-minded person. But as a working mother, I am also busy. So, like many of us, my ethical shopping habits extend to having an organic veg box delivery, taking my own bags to the supermarket and buying recycled loo roll. My children know which bin to use to dispose of various materials and to turn off the tap while brushing their teeth, and they relish homework projects on melting ice caps. Yet, as I find myself wading through the endless plastic punnets, cellophane wrappers and – most grim of all – soggy nappies, it’s startlingly clear that I am part of the problem rather than the solution.

For starters, I have three children. Researchers at Lund University in Sweden claim that having children is the most destructive thing a person can to do to the environment, with one fewer child per family saving ‘an average of 58.6 tonnes of CO2-equivalent emissions per year’. As an only child, I like to think I have a gene quota to fill, and that I’m raising enlightened, impassioned kids who might go on to find the key to world peace. Yet the more I force myself to engage with the evidence around climate change, the less convinced I am by my own defence.

Micro-protesting: The rules
During my time as a micro-protester, I will ‘say no to plastic’ as Maidment dictates. As well as using only non-disposable water bottles, coffee cups, bags and straws 
– behaviours that have become much more commonplace in the wake of Blue Planet, which compellingly highlighted the effects of plastic pollution on our oceans 
– I’ll go a step further to emphasise my point. This involves removing any plastic packaging from the products I buy at the supermarket and leaving it at the till. This idea is increasingly popular, as it pushes the problem and cost of disposing of plastic back on to the retailers (supermarkets alone create more than 800,000 tons of plastic packaging waste each year), sending a clear message that consumers want change. The thinking is that if enough of us take matters into our own hands, 
creating such mini protests across the nation, then sooner or later, retailers will have to deal with it.

As we know, it’s not just plastic that poses a threat to the natural world, so much as the general rate of human consumption. In her book Doughnut Economics: Seven Ways To Think Like a 21st-Century Economist, Kate Raworth of Oxford University’s Environmental Change Institute explains that the current growth model, which relies on the rampant consumer model of capitalism, doesn’t work. Instead, she suggests that in order for our economic model to be financially and ecologically sustainable, money, markets, taxation and public investment must all focus on conserving and regenerating resources, rather than squandering them.

My own micro-protest, which will nod to these values, involves buying nothing new, apart from the absolute essentials (fresh food and loo roll). If I need something, 
I must trade for it, in accordance with the rules of the Buy Nothing Project (buynothingproject.org), an online network launched in 2013 that connects hyperlocal groups of like-minded people facilitating the ‘giving, receiving, sharing and lending through a web of connections formed between people who are real-life neighbours’. Finally, as mass consumption of unsustainable palm oil continues to ravage the forests 
of Southeast Asia and chemicals pollute our ecosystem, I will follow part of the Say No To Palm Oil’s 28-day challenge (saynotopalmoil.com), making my own largely natural cleaning products. Many eco-conscious consumers may have worked hard to eradicate palm oil from their food cupboards. However, washing products are one of the main sources, which is refined to create soaps, washing powder and other cleaning (not so good) goods.

The plastic boycott
While the fact of my children is already a done deal, the week ahead is not. It is Friday. After dropping off the older kids at school, the two-year-old and I head to our local deli. It’s only as we reach the shop, empty-handed, that I remember Maidment’s words: ‘Bring 
a disposable cup, or do without.’ While forgoing my morning coffee in the name of being a better human isn’t a huge problem for me, the toddler is less pragmatic. Really, there’s no excuse for not having bought him a drink in one of our many sippy cups, but he’s now on the verge of a meltdown and I’m exhausted after a busy week at work. So, remembering the ‘no straw’ and ‘return all plastic wrapping’ rule, I tear off the offending articles and return it to the shopkeeper who looks at me like I might be in the throes of some sort of breakdown, while I mumble that straws are bad for the environment. I leave, silently chastising myself for my limp attempt at eco-warrior-ing while my toddler has an apoplectic fit at the absence of the straw.

But, as the week goes on, rather than feeling hot-cheeked at my public environmental assertions, I feel buoyed by them. The more I read about the impact of everyday behaviours, the less able I feel to do things I can usually justify to myself on the grounds that I’m busy and life is short (buying a bottle of water at my local shop rather than waiting until I get home, getting a takeaway sandwich in a plastic container instead of making my own). By the end of the week, I’m fluctuating between despair that the world is imploding and determination that I’ll do my bit to claw back what resources we still have left.

The cleaning revolution
Undeterred, I return to the house with a renewed sense of purpose to check what we do and don’t have. My usual addled state of mind by the time I get round to our weekly shop, together with the ‘you never know when the apocalypse might strike’ mentality I inherited from my grandmother, means there are endless toiletries I don’t like or bought on offer, bags of panic-bought pulses no one eats, and three bottles of kitchen spray but 
no bathroom cleaner. According to the DIY bathroom cleaner recipe found at saynotopalmoil.com/Take_the_Challenge, I need baking soda, vinegar, a scrubbing brush and a plastic spray bottle. I don’t have the last item, which I’m also pretty sure is in contravention of my no-plastic rule anyway. But if a plastic product is already owned by someone else, surely it makes sense to use it rather than let it fester without purpose. It takes a flurry of WhatsApp messages to locate a friend who is willing to offload a plastic spray bottle later that day. She’s simultaneously bemused and delighted when I insist on 
a trade, which ties in neatly with my ‘buy nothing’ rule 
for the week. She settles on trading it for the cutting 
of a spider plant we inherited from an old lady who recently died, and we both depart grateful and uplifted, vowing to be more swap-minded in future.

I return home and attempt to clean the bathroom with my home-made concoction, which was as easy and quick to use as my usual chemical-based product (the shame). After some serious elbow grease, the results are not far off the same, and my bathroom smells of lemon (which I added for scent) rather than bleach.

Cutting my waste
The inside of our fridge is a sorry sight comprising several half-eaten cheeses, endless mushrooms and green peppers accumulated over the course of several veg box deliveries, which I’ve repeatedly forgotten to amend. Spurred into action, 
I fire off an email rectifying our order 
for future weeks – minus the veg nobody ever seems to eat – and feel instantly more in control of life. I even start flicking through recipe books to see what I could fashion from these leftovers, rather than following my usual ‘fish fingers or pesto pasta’ model of home cooking. The rest of the family don’t raise too much protest at the lentil soup I whip up from leftovers either, so it’s a win-win.

Reflecting on my habits
The more I think about my consumption over the next few days, the more I question my every behaviour. 
As one of the few of my friends not having already given up dairy (thanks to a couple of very powerful recent documentaries highlighting animal welfare and the impact of methane on the environment), by the time 
I make it to the supermarket I’m loathe to buy cow’s milk or eggs, as per my usual routine. I also find myself mooting the possibility of upping sticks to live a more sustainable life in rural Spain – until my husband helpfully points out that I’m worryingly impulsive and don’t have time to reliably remember to take out a reusable flask, let alone manage 
the logistics of moving abroad. Thankfully, as Maidment reminds me, meaningful changes can be made in manageable chunks. ‘It’s about individual responsibility, as well as corporate action,’ she says.

So, this time, once I’ve resisted endless requests for yogurts in plastic tubes and comics with plastic toys attached – not to mention my own magnetism towards the shampoos-on-offer aisle – I stand at the checkout unwrapping swathes of plastic and cellophane from avocados and fruit. 
I feel vindicated as I hand it back to the somewhat amused cashier, who confirms I’m the second person to have done so this week. It takes ages, and the people behind in the queue consider me like a foreign species until I explain what I’m doing and why, and they too seem to be on board (even if they’re not actually following suit themselves today).

Looking to the future
Despite the idea that living ethically is a luxury reserved for those who can afford it, I find I have saved cash by using up what we have and not buying new things that we don’t really need. For me, the real challenge is getting the foundations in place. I’m naturally disorganised and, like many people, I have a lot to think about. But there are things I 
definitely can do – like never buying plastic applicator tampons, disposable coffee pods or throwaway face wipes, and not succumbing to the lure of the ready meal. Because the unavoidable truth is, no matter how worthy it sounds, finding time to adjust the way I live might be tricky and awkward, but it’s also vital. Making small changes is the key, and thinking ahead is a massive part of that – because if we don’t, what sort of world are we looking ahead to?

Get sustainable
What steps can you take?

Opt for lower-impact menstrual products. There are a wide range on the market from the mooncup to D by DAME (the world’s first reusable applicator), not to mention non-applicator tampons.
Stop using disposable face wipes. They might seem like a low-hassle option, but they 
are costing the earth. Go for a simple, quality cleanser and a flannel instead.
Don’t buy chemical cleaning products. Choose non-toxic versions or make your own 
(there are plenty of recipes at saynotopalmoil.com/Take_the_Challenge).
Avoid palm oil. Check the back of packets for unsustainable palm oil in food, which is causing mass deforestation.
Choose products with minimal plastic packaging – and return any plastic from items you buy to the retailer. You’ll pass the problem of disposal back to them while also making 
a statement that you demand change.

The post ‘What I learned after a week of living sustainably as a micro-protester’ appeared first on Marie Claire.

Go behind-the-scenes with Susie Lau at Louis Vuitton’s Cruise Collection

Go behind-the-scenes with Susie Lau at Louis Vuitton’s Cruise Collection

We’ve got the inside track

susie lau louis vuitton cruise

In a true marriage of fashion and art, Louis Vuitton kicked off their show in amongst the grounds of Fondation Maeght. The Cruise 2019 show snaked around Joan Miró labyrinth, with models sharing catwalk space with life-size figurine sculptures, in Saint-Paul-de-Vence, a scenic hilltop town in the south of France. For Nicolas Ghesquière, the French fashion designer, it was his fifth Resort collection for Louis Vuitton and a particularly special moment as he’d just recently renewed his contract, just last week, as creative director for the house.

Of the 600 guests, lots of celebrities pitched up, among them stars like Sienna Miller, Emma Stone, Lea Seydoux, Sophie Turner and Mark Ronson. Fashion blogger and our woman-on-the-ground, Susie Lau, was there to capture all the show’s moments and highlights. Plus give us a sneaky look into some of the behind-the-scenes action.

Here’s what went down from the inside…

Nicolas Ghesquiere’s pooch made an appearance

louis vuitton cruise collection 2019

It’s hard not to enjoy the build-up to a cruise show and that normally entails a miscellany of specially created souvenirs in our hotel rooms in Cannes when we arrived. I loved the stickers of Grace Coddington’s cat illustrations and the new addition of dogs, in lieu of Nicolas Ghesquiere’s own pet pooch! 

louis vuitton cruise collection 2019

And the super cute mini Malle trunk that actually could function as a handbag, but only if you kept it really minimal for a night out.

Re-united with my blogger besties

louis vuitton cruise collection 2019

I love being on the road with people that I’m truly good friends with. Bloggers and influencers tend to run in packs because we’re invited to the same events. It was great to be reunited with Bryan Boy and catch up with Aimee Song and Yoyo Cao, who has just had a little boy so we had a lot of mum talk to get through! I only ever seem to see them at fashion shows. I loved meeting newcomers like Chao Bui, an influencer from Vietnam who’s only 21! It was her first LV show and obviously, she was mega excited.

Casually spotted a few monks

louis vuitton cruise collection 2019

Sod’s law that we get to the French Riviera and that it’s all grey skies.  It was touch-and-go whether we’d embark on the boat trip to the nearby island île Saint Honorat but in the end we ventured forth in standard-issue boat rain macs, as we were drenched with sea spray. 

The Cistercian monastery on the island was a beautiful rest stop though with incredibly lush flowers and palm trees. I was definitely way too optimistic decked out in my LV Monogram bikini. But the sun did eventually appear on the edge of the island by the rocks!

Did I mention the art?

louis vuitton cruise collection 2019

I’ve visited the Fondation Maeght just once before but never really got an opportunity to see it properly then, so it was great that we arrived early for a pre-show cocktail and take a look around. We had fun weaving in and out of the Calder, Giacometti and Barbara Hepworth sculptures.

louis vuitton cruise collection 2019

And just past the percussive orchestra stage was the show’s magnificent Miró Labyrinth. With all the lighting set up, the incredible Miró sculptures were illuminated in a really dramatic way. I spent half an hour walking around taking loads of snaps before the show even started.


The collection mimicked the architectural surrounds

louis vuitton cruise collection 2019

Nicolas Ghesquière went for a site-specific collection, from oversized boho frocks in a Braque-esque palette to 80s glam and Mad Max ensembles. The mashing together of styles was so consciously madcap — I instantly loved it.

My favourite piece? The curved bolero jackets and the peach satin dress which was so intricately embroidered. Another highlight was the Archlight trainers, they’d been transformed into over the knee boots painted with Chagall-style brushstrokes. I also got a good look at the bag collaboration with Grace Coddington featuring those illustrated cats and dogs. Just so cute.

Had to fit in some pool time

louis vuitton cruise collection 2019

The night concluded at one of my favourite spots, the iconic Hotel du Cap-Eden-Roc in Antibes. The iconic pool, that’s flanked by rocks on the one side and sea on the other, was given a special Louis Vuitton makeover. 

Sadly it was pummelling down with rain so we mainly stayed inside Club Louis Vuitton complete with beefy lifeguards hoisting guests up in their arms. 

louis vuitton cruise collection 2019

Of course the next day the sun and blue skies were out in force.  I finished my LV Cruise journey beachside, finally getting to soak some rays…

The post Go behind-the-scenes with Susie Lau at Louis Vuitton’s Cruise Collection appeared first on Marie Claire.

Poldark’s Eleanor Tomlinson on her debut album and adventures in Rome

Poldark’s Eleanor Tomlinson on her debut album and adventures in Rome

Marie Claire caught up with Poldark star Eleanor Tomlinson to talk Gone With The Wind, folk music and hunting for antiques

Eleanor Tomlinson is a woman of many talents. Not content with stealing our hearts as heroine Demelza in BBC drama Poldark, she has now recorded an album of folk classics. Marie Claire’s Victoria Fell spoke with Eleanor to get the lowdown on her life, from her favourite filming locations to the importance of always wearing sunscreen.

‘I live in south-west London, and it’s great to be slightly further out of the city. I’m really into decorating and my flat is filled with antique pieces, like my gramophone. There’s an incredible antiques fair at Kempton Park twice a month, where you can find a real steal – I recently picked up a beautiful 40s bust there.’

‘I’ve got to film in some amazing places, like Rome a couple of years ago, which was a fabulous city to explore. On the same job, I went to Lithuania and one of the other cast members and I borrowed scooters, so we took off into the mountains. We were lucky with Poldark, too. There aren’t many other places like Bodmin Moor with wild horses roaming around.’

‘The film Gone With The Wind has been a firm favourite of mine since I first saw it as a child. I like that it’s a love story that has a strong and powerful woman at the forefront. I think Scarlett O’Hara is one of the best literary characters ever created, and I’m such a fan of Vivien Leigh.’

‘Music has always been a big part of my life. My mum and brother are both professional singers. When we were kids, they’d get up and entertain at family parties. I don’t consider myself a singer, but I got the opportunity to record an album of folk covers with [Poldark soundtrack composer and Oscar winner] Anne Dudley, which was great fun.’

‘Making sure I use hair and make-up products that are cruelty-free is important to me. Pai does some great skincare, The Body Shop is lovely and I like the lip glosses and colours by Hourglass Cosmetics. My go-to product is Actinica, which is a really powerful sun cream. It’s lovely to wear underneath make-up and gives your skin a glow. I apply it every day – anything to stop the premature ageing.’

‘I enjoy mixing up my style. Karen Millen recently gave me an amazing fringed leather jacket. If I’m going to a red-carpet event, I work with Nisha Grewal, a fabulous stylist who helps me create the whole look, like the one I wore to the BAFTA TV Awards. It was a silver metallic dress with beading by Naeem Khan.’

‘My signature scent is Chanel No5 L’Eau. I grew up with my mum wearing the original and she bought me this newer version for my birthday last year. It’s a beautiful perfume.’

‘I try not to be on my phone too much unless it’s for work, but I’m into an app at the moment called 1SE (1 Second Everyday). It uses your calendar to access photos and videos, so for each day of the week you can add a clip, which eventually plays back in a long video.’

Eleanor Tomlinson’s album Tales From Home is out on 8 June.

The post Poldark’s Eleanor Tomlinson on her debut album and adventures in Rome appeared first on Marie Claire.

The important reason why people are leaving shoes around cities

The important reason why people are leaving shoes around cities

The #MillionsMissing campaign wants to give a voice to the thirty million people worldwide who suffer from ME

Words by Je Banach

If on May 12th, you find yourself out and about in Amsterdam, Boston, London, Chicago, Edinburgh, or one of approximately 95 other cities around the world, it is likely that you will encounter a plaza or other outdoor area populated with pairs of shoes.  At first glance you may assume that you have stumbled upon the scene of some conceptual or performance art, but the uninhabited footwear is intended to catch the eye of passersby—and the world—as part of #MillionsMissing, a global campaign including a series of in-person and virtual advocacy events meant to call attention to the millions of people around the world suffering from myalgic encephalomyelitis.


The debilitating condition, also known as ‘ME’, causes pain, nausea, extreme sensory sensitivities, post-exertional malaise, and many other severe symptoms that leave the majority of those who suffer from it unable to work or resume the activities of their previous lives, and many more bedridden. The shoes represent those individuals who are unable to attend events in person due to the severity of their condition—people of varied age, gender, and race who often go unseen both literally, due to the restrictive nature of their symptoms, and figuratively, in terms of the lack of proper recognition and care they currently receive within the global medical community.

The campaign, initiated in 2016 by the ME Action Network, is intended to raise awareness, build community, and, most importantly, move governments around the world to assign proper and much-needed funding for research. While the condition affects a stunning fifteen to thirty million people worldwide and leaves its patients with a poorer quality of life than many of the more highly-funded conditions, funding for ME research remains woefully (some might say disgracefully) low. As a result, patients are forced to become their own activists and advocates while coping with the condition’s devastating symptoms.

Jennifer Brea, co-founder of the ME Action Network, directed an award-winning documentary about her own experiences with ME from her bed and advocates on a regular basis both in person and online. Jessica Taylor Bearman, a young woman featured in Brea’s documentary who has suffered from a severe form of ME since she was fifteen, maintains a blog that captures the reality and complexities of life with ME and recently published a book inspired by her own experiences titled A Girl Behind Dark Glasses. Anil van der Zee, a former professional ballet dancer with Introdans, Grand Théâtre de Genève, and Bern Ballet, forced into early retirement by the condition, created #art2CureME, inviting those with ME to choose a song from Unrest that they can sing, dance to, or otherwise perform and share online in an effort to draw a larger audience to the film, to increase awareness and further educate the greater public.

Credit: #MEAction

Many doctors and researchers – such as Professor Ronald ‘Ron’ W. Davis, Director of the Stanford Genome Technology Center at Stanford University, whose son suffers from a severe manifestation of the disease – also perform regular advocacy work, which necessitates long hours and exhausting travel in addition to their regular daily work in the field. All share the goal of helping to shed light on a misunderstood and puzzling illness in order to create a public narrative that more closely approximates the real and devastating experience of life with this illness: a truer narrative that would almost certainly lead to adequate funding for research and, ultimately, a cure.

The #MillionsMissing campaign is only one example of coordinated events and action taking place during the month of May in order to bring attention to incurable chronic illnesses. The entire month has also been designated as an international awareness month for fibromyalgia (which shares an official awareness day with #MillionsMissing), Lyme disease, and other chronic immunological, neurological, and endocrine diseases. The overlap is a notable one. While advocacy and research efforts in these areas were previously compartmentalized, chronic illness patient-advocates are now, in greater numbers, helping to bring awareness not only to the condition or conditions from which they suffer, but to ‘fraternal’ and similarly misunderstood conditions—conditions that also lack sufficient funding for research.

Credit: #MEAction

Brea and others suggest that those suffering from ME as well as conditions including but not limited to chronic Lyme disease, fibromyalgia, Ehlers-Danlos Syndromes, MCAD, Endo, and POTS would benefit from uniting in their advocacy efforts. On Twitter, Brea recently shared a logo of a snake split into segments labeled with the names of several illnesses along with the phrase ‘Join, or Die’—a visual that hits home the dire need for collaboration and cross-over among patients, doctors, researchers, and activists.

Open Medicine Foundation—comprised of a dedicated team of Nobel laureates, National Academy Science members, and medical dynamos led by clinical laboratory scientist and founder Linda Tannenbaum devoted to researching ME, fibromyalgia, and chronic Lyme disease—recently announced that they sense a meaningful shift taking place as public conversations about and more truthful media representations of these conditions increase. At the start of 2018, widespread public conversations around the release of Brea’s film Unrest combined with media attention and lobbying by academics and others allowed the ME epidemic to catch the eye of the philanthropist known as ‘Pine’ of The Pineapple Fund, who subsequently donated $5M to Open Medicine Foundation—proof that the correction of misleading narratives about these illnesses (such as the idea of ME as a basic “chronic fatigue syndrome” that only leaves one “tired”) and the dispelling of popular myths (like the notion that a disability must be ‘visible’ in order to be real) have a significant impact on progress, actually speeding increases in funding and improvements in care for those suffering.

Some of the #MEAction team in Birmingham last year. Credit: #MEAction

Stories of the tireless activism of patient-advocates and others in the chronic illness community – perceived as ‘inspiring’ and “motivational’ – are often spun into feel-good narratives about human will and empowerment presented for public consumption. In reality, their required activism is an immense burden that puts further strain on bodies already under attack. Advocacy work should not be left only to those who suffer and their families and caretakers.

Fundraising for research is an absolute necessity, but those unable to give can also help simply by participating in #ConversationsforCures – that is, any dialogue that helps to bring much-needed attention and awareness to these conditions and the suffering of those living with them. These conversations that will almost certainly lead to greater funding for research, a better quality of life for millions suffering around the world, and, quite possibly, cures.

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‘My right ear was so badly damaged, it had to be removed’ – one brave woman’s story of her acid attack

‘My right ear was so badly damaged, it had to be removed’ – one brave woman’s story of her acid attack

Five years ago Katie Gee was travelling in Zanzibar when a stranger threw acid on her, changing her life forever. Here, she tells Kate Graham about that fateful day and how she overcame the trauma to travel again

The acid attack

Imagine a thousand wasp stings on your body, a pain so sharp, so unbearable, that your legs buckle beneath you. 
I had been walking down a dusty street in Zanzibar laughing with my friend, when out of the blue we were subjected to an acid attack.

The memory of it still makes me shake: the splash of cold liquid on my skin, the paralysis in my body as it froze with shock, the panic 
as I heard Kirstie’s piercing screams. It’s strange to reflect on how, in a split second, your life can change irreversibly. Five years on, I’m still having surgery to help my body recover from what happened that day. Deep down, though, the mental scars will take much longer to heal.

Kirstie and I arrived in Stone Town, Zanzibar, an island off the mainland of Tanzania, four weeks earlier, in August 2013, searching for adventure. It was an opportunity I’d looked forward to for months – the chance to volunteer, see something of the world, and relax before the intensity of A-level results and university. We began teaching at a local primary school, getting to know the locals and immersing ourselves in the culture, while at weekends we explored the beautiful local beaches near our hotel.

We witnessed extreme poverty and were conscious of our positions as outsiders, but we never felt threatened. The people we met were incredibly friendly and we saw women and girls treated equally in mixed schools, so we never had a sense of misogyny, either.

Much of the population in Zanzibar is Muslim, so we were sensitive to the local customs, dressing respectfully and even offering to take off our Star of David jewellery (we are both Jewish). But we were told it wasn’t necessary, and were welcomed warmly by the children and their families who invited us into their lives.

On the evening of the acid attack, people had been gathering to eat after prayers. It was our last day volunteering, so we headed out for a celebratory dinner. Although we were sad to leave the children we’d become fond of, we were excited about our plans to travel in Tanzania before flying home.

As Ramadan prayers were coming to a close, the streets began to fill and I remember laughing as I flapped my oversized jumper over my body to generate a breeze in the intense heat. I had no idea that this single piece of clothing would save me from even more of the excruciating pain that was about to come.

As we turned left down a side street, a motorbike appeared and slowed right down next to us. In the split second it took me to look up and see two men, the liquid was already flying through the air towards me.

I instantly knew something terrible had happened when the searing pain began as it splashed across the right-hand side of my face and body. The smell was horrific and the pain immediate and consuming. In a flash, I reached for a dry part of my jumper to wipe my eyes and in a blind panic just ran.

It’s strange, but I instinctively knew Kirstie was OK and it was fight or flight. Within 60 seconds I was inside a beachside restaurant, managing to make my way to the customer showers where I turned on all the taps, and allowed the cold water to pour over my body. Looking at my blistering skin, I realised it must have been acid as the smell was acrid, like boiling coffee. My thin trousers and T-shirt disintegrated before my eyes.

I have never felt so utterly powerless and vulnerable as I stood nearly naked screaming for help, desperately trying to wash the acid away. My eyelids were totally burned and it felt like my face was falling off. 
I only remember snapshots from the next few hours. Two tourists, Nadine and Sam, stopped to help us and somehow they got us into a car and we sped to the local hospital. Kirstie kept repeating, ‘What is going on?’ but I was in such profound shock that I couldn’t even speak.

The hospital

The local hospital was total chaos – it ran out of saline solution to treat us and we had to head to a nearby hotel, where we stood under showers for over two hours, both shivering uncontrollably in terrible agony, with no idea what would come next. As reality dawned on me and I realised what had happened, my mind started to shut down and I became numb.

Over the next 24 hours, we boarded a medical plane to the mainland and then to London. It was during a stop to refuel in Nairobi that we went to the toilet and glanced in the mirror to see our faces for the first time.

We broke down and sobbed as we stared at our horrific injuries. My face was swollen to four times its normal size, my right eye completely shut from the swelling. My mouth was so swollen, I couldn’t eat or drink. My face, neck, stomach, arm, leg, where the acid had hit, were discoloured and grey.

Kirstie had fared better, having been a greater distance from the attacker, but she still had some burns to her face, arm and shoulder. As a doctor pushed my wheelchair through the airport, with Kirstie walking beside me, people stood and stared.

I’ll never forget seeing Mum’s face when she greeted us on the runway at Heathrow. I knew she was trying to be strong for me, but I could see her agony, the tears in her eyes.

‘My thin trousers and T-shirt disintegrated before my eyes.’

I have so much admiration for the people who cared for us at Chelsea and Westminster Hospital burns unit. Kirstie was allowed to go home, but I had to stay. It transpired I had 30 per cent burns and a nine-hour operation followed. I had skin grafts on my face, back, arms, stomach and legs, which left my body like a patchwork quilt.

My right ear was so badly damaged, it needed to be removed. I spent two months recovering in hospital before seeing psychologists and physiotherapists. I’ve had more than 50 operations in total and there are still days when I can’t process that I will never go back to the person I was before.

The emotional and mental recovery has been the most challenging, especially when things went back to normal after the incredible outpouring of support I had. During my first weeks in hospital, I never had one evening alone – there were always friends or family there to keep my spirits up. But people had to get back to their lives – my friends went off to university and I was left behind, in limbo.

I felt lonely and isolated. My life had stopped; the dreams and ambitions I’d had for myself were over. I had happy moments, of course, but generally I felt anxious, and negative thoughts plagued me: ‘Your face is still bright red. There are endless surgeries to come. This is your life now.’

The nights were hardest. I dreamed of people throwing acid on me from all angles, of being attacked or chased. They were so vivid and frightening that I’d wake up in a sweat.

I began staying up until 2am watching TV because I didn’t want to shut my eyes. I regularly felt dizzy and disorientated, and had panic attacks. I also had to deal with the reality of my appearance. People stared when I went out. I lived in scarves, sunglasses and a beanie hat; I couldn’t look someone new in the eye because I was so ashamed of my face.

The recovery

Slowly, though, I have begun to take small steps towards rebuilding my life. Despite being gripped by fear, I went to the theatre with my mum, then on a short break to Amsterdam with a friend. I’m not as relaxed as I used to be, but I recently graduated with a 2.1 degree in sociology and feel incredibly proud of how far I’ve come.

University wasn’t the experience I’d once hoped for – no parties or drinking, plus a constant struggle with pain, anxiety and endless operations. But I’ve just been travelling across the US and Australia, and have some work lined up in the property business.

They never caught the men who did this to me and, sadly, I can’t forgive them. I don’t think I ever will. But I’ve been able to move on from the anger by compartmentalising it. I’m more focused on getting on with my life now. I still struggle with anxiety, and the rise in recent acid attacks in the UK terrifies me – the number of people needing specialist treatment has doubled over the past three years, which is shocking.

But you can’t live in fear. Today, the face I see in the mirror is one I’m proud of. When people stare at me, I stare right back. I’m proud of my scars. People tell me I’m brave but, honestly, you have no choice. When you’re forced to be strong, you are.

Photographs by Jenny Lewis

The post ‘My right ear was so badly damaged, it had to be removed’ – one brave woman’s story of her acid attack appeared first on Marie Claire.