Book of the Month: It’s All in Your Head

If your previously able-bodied friend stopped coming over for their regular weekly coffee catch-up, citing a numbness that prevents them from getting out of bed or opening the front door, you’d be worried. You’d encourage them to seek medical care. You might even go with them.

What if they went to their GP, and following a series of referrals to specialists, investigative procedures and tests the clinical conclusion suggested that there was nothing wrong? That is, nothing pathologically ‘wrong’ definable in terms of the current field of medical knowledge. How would you receive this news? Would you assume that your friend is therefore ‘well’?

These questions and the resulting cultural and social aspersions are what consultant neurologist and author Dr Suzanne O’Sullivan deals with on a daily basis and in her work ‘It’s All in Your Head: True Stories of Imaginary Illness‘. She writes: ‘even if medical tests cannot explain your pain or tiredness or disability, it does not lessen your suffering. The pain of medically unexplained illness is every bit as real as any other and, if anything, is multiplied by the lack of understanding.’

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Ever since Oliver Sacks’ iconic ‘The Man who Mistook his Woman for a Hat’ was published in 1986, doctor’s accounts of their patient’s often unusual, inexplicable and unique health experiences have brought humour and uncertainty in equal measure. O’Sullivan doesn’t try to resolve these, but rather explores them with a sensitivity and insight that can only be afforded to someone who’s professional nature and personal motivations move her to try to bring meaning.

 

Image Credit: fedewild, Flickr

Contemporary Activism: a digital world

Readers from the UK and further afield will have either been immediately impacted by, or exposed to, images in the media of neon-clad, placard wielding junior doctors at gateway picket lines to healthcare outlets earlier this month. So too, London regularly plays host to crowds of similar professional and public actors, performing an activity through collective movement and visibility such as last year’s Solidarity with Refugees march.

'Refugees Welcome' at London Rally on 12 September 2015. Image credit: R4vi, Flickr

‘Refugees Welcome’ at London Rally on 12 September 2015. Image credit: R4vi, Flickr.

Protests, engagement with strike movements, demonstrations, ‘sit-ins’ – what are they really about, and what role do they play in shaping legislation and lobbying policymakers in global health? At the most basic level, these are instances of socially enacted politics, with the focus of such activity being a desire to reach a point of debate, challenge or to highlight a cause.

These methods are the original form of activism, first linked with politics in the early 20th century and defined by Sarifa Moola (2004) as the ‘involvement in action to bring about change, be it social, political, environmental or other change. This action is in support of or in opposition to one side of a controversial argument’. The patterns of a rally’s trajectory of mustering, movement and end-point is symbolic of all these forms of action that seek to make change through self-determination and a bottom-up approach.

West Suffolk Junior Doctors Strike. Image Credit: sasastro, Flickr

West Suffolk Junior Doctors Strike. Image Credit: sasastro, Flickr

Indeed, there is comprehensive debate surrounding the impact of such social protests to actualise sustainable change once the social mass and media attention has dissipated. Certainly, the personal sense of social responsibility is often overlooked in the motivations of such activism; in the instance of street protests, participation is heavily influenced by a desire to exercise solidarity as much as to instigate concrete policy change.

In the field of global health, social activism such as collective rallies and awareness events  in countries across the world on World AIDS Day, for instance, are challenging to co-ordinate and are, arguably, devaluing their integral benefit of visually raising the profile of a health issue, cause, or injustice because of their frequency and questionable prospective impact. Hardly a day goes by without a street protest in at least on capital city. Indeed, contemporary activism is witnessing a shift in actors and changing movements.

BT Tower Turns Red For World Aids Day. Image Credit: Jon Curnow, Flickr.

BT Tower Turns Red For World Aids Day. Image Credit: Jon Curnow, Flickr.

In the increasingly globalised, Big Data age, innovative use of social media is becoming increasingly applicable, and effective, in establishing and constructing awareness and advocating for change. Notwithstanding that electronic information dissemination and the passivity of signing an online petition, for instance, can be both unreliable or equivalently ineffectual, there are areas of digital communication that represent powerful and valuable reformative channels.

Digital communication spaces which invite e-participation are clearly identified and outlined in Palgrave Macmillan’s publication ‘Emerging Digital Spaces in Contemporary Society Properties of Technology’ which highlights that these arenas are not just novel gimmicks. Take, for instance, the activism surrounding the youth summit of the organisation ‘Restless Development’ in 2015. At this event, hundreds of International Citizen Service volunteers convened at the Department for International Development at Whitehall, London, which became a hub for interactive digital workshops, Twitter hangouts (collective use of a pre-defined ‘handle’, so augmenting the possibility of trending) and live link-ups and other engagements with the opportunities presented in cyberspace.

Image credit: Palgrave Macmillan

Image credit: Palgrave Macmillan

Pertaining in particular to Twitter, Paolo Gerbudo’s ‘Tweets and the Streets‘ work offers a wide-ranging analysis of the role of this particular social media channel in contemporary activism, reviewed as offering ‘an exciting and invigorating journey through the new politics of dissent, […pointing] both to the creative possibilities and to the risks of political evanescence which new media brings to the contemporary protest experience‘.

This doctrine of direct action can be translated not only to promoting change but also encouraging involvement and snowballing of activity, as seen with the story of Lara Casalotti, a 24-year-old with mixed Thai-Italian heritage who’s shock diagnosis of acute myeloid leukemia saw her turn to digital communications to seek bone marrow donors for her very narrow pool, which has grown into a worldwide appeal.

For Lara, social media’s unparalleled speed of engagement of peoples, minds and resources represents a very personal and surely sustainable approach to promoting awareness and change that can be more valuable than face-to-face contact and street movements in the race to make change in an increasingly time-poor global society.

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Image Credit: Takver, Flickr

Photojournalist of the month: Ashley Gilbertson

Whiskey Tango Foxtrot is the symbolic title of Ashley Gilbertson’s 2007 publication which chronicles, through photographs, his experiences documenting the Iraq War. Gilbertson has come a long way since his earliest forays into camera work as a teenager capturing the habits of his skateboarding peers. In his twenties, he was commissioned to visit Northern Iraq and has returned there on many occasions during the conflict.

His portfolio showcases a skill set as eclectic and varied as his subject matter, with portraits, New York City and military life all featuring as standalone projects. Their common thread? An exposure of the therapeutic potential of photography which is one of Gilbertson’s fundamental motivations.

Following are some of his images from his time in Iraq between 2002 – 2008, offering a fascinating introduction to his more recent work Bedrooms Of The Fallen – a series of images which capture the personal spaces – frozen in time – of service members who died in Afghanistan and Iraq. This collection can be seen in The New York Times Magazineand won Gilbertson the documentary photography award.

Image reproduced courtesy of Ashley Gilbertson

Image reproduced courtesy of Ashley Gilbertson.

An American military policemen photographs a dead Mahdi Army fighter in Karbala on May 6, 2004. The insurgency in Iraq is rarely seen, usually ducking in and out of vision of the soldiers, and when one is captured or killed the soldiers are curious to see the human face of their enemy.

An American military policemen photographs a dead Mahdi Army fighter in Karbala on May 6, 2004. The insurgency in Iraq is rarely seen, usually ducking in and out of vision of the soldiers, and when one is captured or killed the soldiers are curious to see the human face of their enemy. Image reproduced courtesy of Ashley Gilbertson.

Soldiers from Red Platoon, 1-26 Infantry company, 2nd BCT, 1st I.D. patrol Southern Samarra, Iraq on October 3, 2004. Civilians who venture outside carry prominent white flags to identify themselves as non combatants.

Soldiers from Red Platoon, 1-26 Infantry company, 2nd BCT, 1st I.D. patrol Southern Samarra, Iraq on October 3, 2004. Civilians who venture outside carry prominent white flags to identify themselves as non combatants. Image reproduced courtesy of Ashley Gilbertson.

A Black Hawk helicopter carring an American General momentarily blocks the sun of a group of Polish soldiers tanning themselves on a base in Karbala, Iraq on May 3, 2004. The American military were forced to fight for control of Karbala after Muqtada al-Sadr's Mahdi army easily over whelmed the unwilling coalition partner, Poland.

A Black Hawk helicopter carring an American General momentarily blocks the sun of a group of Polish soldiers tanning themselves on a base in Karbala, Iraq on May 3, 2004. The American military were forced to fight for control of Karbala after Muqtada al-Sadr’s Mahdi army overwhelmed the unwilling coalition partner, Poland. Image reproduced courtesy of Ashley Gilbertson.

Marines from Bravo company, 1st Battalion, 8th Marine Regiment detain an insurgent after they shot him and his two comrades in the neighborhood nicknamed "Queens" during the battle for Falluja, Iraq on November 13, 2004. The insurgent claimed to be a student. The marines responded, "Yeah, right, University of Jihad, motherfucker." Image reproduced courtesy of Ashley Gilbertson

Marines from Bravo company, 1st Battalion, 8th Marine Regiment detain an insurgent after they shot him and his two comrades in the neighborhood nicknamed “Queens” during the battle for Falluja, Iraq on November 13, 2004. The insurgent claimed to be a student. Image reproduced courtesy of Ashley Gilbertson.

MdM Talks: Life after Ebola

I was introduced to Dennis Akagha by a friend on my Masters in Global Health & Development programme, and over the course of the winter break I was moved and touched by the experiences related in Dennis’ correspondence. He has agreed for his story to be shared below.

Image courtesy of D. Akagha

Image courtesy of D. Akagha

Dennis comes from a  family of four living in Nigeria and his desire to work in banking motivated his studies in Business Management then Banking and Finance at university. Post-graduation, rather than working in this sector, he started his own business while also collaborating with an independent organisation to gain a better insight into its operational management.

He highlights that he also had a lot of marketing experience and briefly employed these skills with an oil and gas firm which was the last position he held before the Ebola crisis. Following his diagnosis with, and treatment for, Ebola, he decided to volunteer with the World Health Organization as a community mobiliser aiming to sensitise communities about the virus. As his passion for social work developed, he travelled to India for an 8-month training scheme from which he has recently returned, to become a social change-maker alongside running his own health promotion project.

In his own words, Dennis shares his experience of Ebola: I became infected with Ebola through my late fiancée who was one of the nurses caring for Patrick-Sawyer, a Liberian-American lawyer who entered Nigeria carrying the virus. Tragically she, and her two-month old foetus, died two weeks following this exposure. I was the one who cared for her during her miscarriage caused by the viral load making the foetus non-viable and that was how I became exposed and infected. A couple of days after her death , I started experiencing the tell-tale Ebola symptoms (high fever, body and joint pains). I alerted the Lagos State Ministry of Health who immediately transferred me to a unit for testing which confirmed my fears. I was then placed in the isolation ward for care and treatment alongside other infected persons, under the management of Médecins Sans Frontières.

I coped with being infected through retaining my characteristic positivity and relying on my Christian belief. In spite of my diagnosis and the limitations of the isolation ward, I continued with my normal habits such as morning push-ups, praying and reading. Ebola causes severe dehydration so I was given oral rehydration therapy and some therapeutic foodstuffs because we were told that these measures boosted the immune system and help fight the virus. As there was no cure available at this time, all treatment was maintenance based.

Dennis recalls that he had very little trouble in both accessing and receiving treatment, instead citing psychological setbacks and stigma pre- and post-discharge from the isolation ward as his greatest challenges. He recalls how, in spite of his awful experience, he suffered rejection from friends, neighbours and people I relied on to lead a happy life. He continues: I was nearly evicted from my house, I lost my job during the process, and I couldn’t make purchases locally but instead had to travel further afield where I was effectively incognito.

I always tell people that, in most cases, people don’t know their purpose in life until they undergo a tragic event such as the one I experienced. As an Ebola survivor, I have been given an opportunity to better understand what people facing similar stigmatising and life-threatening health traumas such as  HIV/AIDS or cancer go through. I experienced what it means to be an outcast through discrimination. This was what prompted me to come up with a project that campaigns against stigma and discrimination of people living with HIV/AIDS and other infectious diseases that could cause them to be socially marginalised. Ebola has impacted my life to such an extent that I now see my purpose completely differently and I am able to use my story to bring healing to others – often those who have lost hope .

At first, there was inadequate information and a lot of false communications surrounding the Ebola crisis in Nigeria, exacerbated by social media. For instance, one morning, a group who knew what had happened to my fiancée called me telling me that I should bathe in hot water mixed with salt. It was only after some days of delay that the local media started working effectively to educate the general public on how Ebola is spread and promote preventative measures. There was also a great deal of international coverage and Nigeria became a spotlight for many international media organisations. I remember giving interviews to news agencies including Aljazeera, the BBC, and more who came to my apartment to get first-hand information.

Prior to my infection with Ebola I didn’t know much about the virus and had not heard of any intervention programmes. Moreover, while in the isolation ward, I only went online to check the survival count of people who had been infected. I needed to draw strength from their stories. Therefore, the singular most important intervention I was aware of was when Ebola spread to Nigeria because prior to this  benchmark there was a dearth of information. I commend Nigeria for working alongside international organisations and NGOs and for being very proactive in their approach that was both supportive and sought to prevent further viral spread.

From my own perspective, one lesson that should be learnt from the Ebola crisis is that governments and international organisations must ensure everyone is working together which was largely the case in Nigeria and so contributed to the rapid curtailment of the disease spread. No country should be left alone to handle their health challenges regardless of the disease and its characteristics. So too, people should always report themselves as quickly as possible if they have been exposed to Ebola – such timely personal and government intervention helped get the virus under control in my country.

My initiative ‘JustCare’ organises projects such as workshops, campaigns, life-skills sessions and entrepreneurship training for people living with HIV/AIDS and other infectious diseases that could result in the infected person(s) experiencing stigma. We act as a united voice for people living with these diseases, and with the help of our partners, are slowly changing the way people think about HIV/AIDS by bridging the knowledge gap between how the virus spreads and its implications that exists among the general population of Nigeria.

Image courtesy of D. Akagha

Image courtesy of D. Akagha

Currently our project is self-funded, and our immediate focus is to improve our social media presence and credibility. We believe that the more people see the little changes we are making, the more likely we are to gain their trust and support for future projects we already have in the pipeline. Our goal is to impact lives and employ the expertise of  related organisations to create the change we want to see in Nigeria regarding HIV/AIDS. Presently, there has been a set-back from international donors for antiretroviral therapy (ART) funding and this is affecting those least able to access treatment. We believe there is still more to be done in this area and we want to give this initiative our best shot to save lives, reduce stigma and lower the infection rate in Nigeria.

 

Image Credit: trust.org,  Flickr