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Why Are We So Afraid Of Sickness And Death?

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By Mekhala Dave:

“Life’s but a walking shadow,” said Macbeth, in a Shakespearean soliloquy, narrated by Sir Ian McKellen on stage. He says Macbeth’s reaction to his wife’s death is without meaning, like a melodramatic end to a very bad play. From literature, in between the lines, there is a potpourri of stifled emotions and a vexed state of mind. Tempted we are to speak through our eyes, for in them are mysteries, a simulated reality veiled from each other. And our voices are gnarled in the façade of a reality we wish to achieve and surround in.

Recently, I watched “Holding the Man“, a film based on the true story from a compelling book by an Australian playwright, Timothy Conigrave, about him and his partner, two gay men deeply in love, ailing with AIDS. The misery and tragic death of his partner brings him to write a memoir for their monumental love, Timothy barely graced his book with an ending when he perished after ten days. They endured hardships like any two people in love, through relationship rough patches, nonacceptance from family and society, transgressing the illegality of gay marriage and finally, the horrors in the treatment of HIV/AIDS.

In a tale of another love story, between my mother and I, she possesses an illness which is the most feared word in our age and time. Cancer, an elephant in the room which we as society utter but one where we seldom acknowledge it publicly, just like AIDS, outside of institutional (such as hospitals, medical centres, etc.), medical academia and artistic contexts. In the film, Timothy’s partner’s father refused to recognise AIDS, a stigma attached to the LGBT community, instead pinning onto his son that he has cancer. This interchangeability of words, AIDS or cancer, struck me that in sickness, the nature of our anguish remains the same.

The duality in the ways we lead our lives, assigning profundity in distractions such as money, fame and wealth, neglecting authentic concerns in love, sickness and health, is leading us into dystopic landscapes of a Bosch painting. The animalistic and monstrous undertones in the brush strokes reveal the surreal and gripping reality of our bizarre human nature that we live with every day but we choose to overlook it. Instead we ‘act’ entirely in opposition to such human nature by replacing it with a delusional idealised reality, striving for that one component which we call social norms.

Art is not a means to an end. In the processes of creating art, there is an untainted veracity of breathing into the work. Similarly, sickness is a vice we all experience but there is a lack of mental creativity and psycho-societal infrastructure to combat the demons that come along for the ride. It’s in the processes to bring hope, care and unconditional love that eases disease-based experience. My mother is a victim of CNS Primary Lymphoma, a rare form of brain cancer, and has been diagnosed with dementia and dysfunctions of motor skills as side-effects, even though she is in remission. She feels alienated from her already fractured community and chooses to speak to her fellow survivors who along with her, comprehend and recognise that life is not a means to an end but magic is in the connection, earthly and spiritual in-betweens.

“Nobody knows where they might end up, nobody knows when they might wake up.” – “Cosy in the Rocket” by Psapp.

Russell Brand, comedian & writer, is known for his past drug and sex addictions, engraved for as long as he lives. Although the media tramples on about his erratic and questionable activities, he embodies a beautiful story of survival from his addictions.  I binge watched “The Trews“, when truth and news collide, a string of short clips among which are his opinions on activism in substance abuse, transcendental meditation and the need for humanitarian unity. Brand has an immeasurable eminence of talking about his past openly and effortlessly. He also engages in activism in bringing awareness of overcoming addictions. There is no shame in his words or postures, he is as clean as it gets. Many of us cannot or do not muster the courage to engage in such topics which usually haunt us in our mental capacity, self-censorship and suppression being the chief disease of mankind.

I often scroll my social media, sites such as BrainPicking or The Artidote, curate platforms to fill a void that we all deeply inhabit and share amongst each other. Today, instead of our voices we make use of elusive artistic materials to validate how we feel in the moment, today or tomorrow, admittedly a useful tool for self-expression. Julie Delpy in Linklater’s touching movie “Before Sunrise”, sat across from her companion Ethan Hawke and said, “You know, I believe if there is any kind of God, it wouldn’t be in any of us. Not you or me. But just this little space in between. If there is any kind of magic in this world, it must be in the attempt of understanding someone, sharing something… the answer must be in the attempt.” We are part of countless conversations, very few are designed around sickness or health nuances and we leave vital bottled-up pain into dregs of social media sharing.

Sickness or illness are part and parcel of our lives which we must learn to address, discuss and act upon before we turn the wheels on lobbying or advance what we know from survival or death toll figures/statistics. Even expressing and verbalising about melancholic or chronic depression with each other frees us for a meaningful lifestyle, as J. K. Rowling shared her depression before conceiving Harry Potter series. So, what do such anecdotes tell us?

All of us are submerged in routinely activities or collectively working toward goals, whether in the attempt to make business deals or eradicate global conflicts, they are equally important. But we hide from the depths of our own authentic selves which remain concealed on a greater consciousness level.  We deny ourselves truth that our partner, parent or children may be gravely plunged into sickness someday. None of us are well-equipped or trained by the present economic, social and political system to cope with nursing them back to health or leading them to their fate. Euthanasia is a debated paradigm of how our greater consciousness is still so unevolved and constrained in a very infinite and colossal universe, largely due to moral, ethical and legal concerns.

Mortality is a constant, yet, there is deficiency in facing this credence, then why are we losing our individual voices? Even a pertinent set-up like psychologists, meditative therapies and palliative care are often shelved and deserted.

Often, like you, I draw my inspiration from art, music, films and books that are the epitome of emotional feedback and act as guidance gurus, a balance they strike between self-expression and allowing for appreciators to decipher the meaning and purpose of life from their work. When our voices throttle in moderation to stay within societal accepted confines, we turn to what we know best: Ignorance, ignorance and ignorance of pain and suffering. Macbeth’s words, in Sir Ian McKellen’s theatrics, in its entirety, sums up the matter of life and death,

“To-morrow, and to-morrow, and to-morrow,
Creeps in this petty pace from day to day,
To the last syllable of recorded time;
And all our yesterdays have lighted fools
The way to dusty death. Out, out, brief candle!
Life’s but a walking shadow, a poor player,
That struts and frets his hour upon the stage,
And then is heard no more. It is a tale
Told by an idiot, full of sound and fury,
Signifying nothing.”

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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