iLL

iLL is a non-profit project committed to documenting, expressing and curating narratives of  disease.

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ANXIETY GROUP

Following our last script on anxiety. Check out this poem.

Disclaimer: 

iLL does not put diseases upon a hierarchy. All mental and physical illnesses are important to us. We do acknowledge though that a person’s personal experience with a specific illness  will make that illness very important to them.

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Let Me Tell You About Anxiety

Let me tell you about anxiety

Anxiety is waking up with your heart beating outside your chest for no reason other than the fact that it is. And you kinda have to deal

Anxiety is havin to take meds to stop an attack, meds that make you sleep which makes you anxious bc you’ve missed out on productivity hours

Anxiety is being physically paralyzed by what others consider ‘everyday stresses’ or 'challenges that build character’. They break

Anxiety is not being able to go to campus because the thought of being amidst crowds and crowds of people makes you numb

Anxiety is always having to defend your anxiety – convince others, and yourself, that you’re not lazy, overly sensitive or weak

Anxiety is irrational. It is excessive. It is burdens meant for a village, carried on your own shoulders, always

Anxiety is panic attacks that leave you temporarily blind. Sometimes you vomit. Sometimes your body heats up. Sometimes you can’t feel.

Khutso Khanyisile Modiba (21) describes herself as, the universe in ecstatic motion, writer and orator. Amani Zua - which is to say the living embodiment of peace and light. In that order.

Her “script” on anxiety was originally posted on her blog

https://khanyikmodiba.tumblr.com/post/148821917427/let-me-tell-you-about-anxiety

[ www.khanyikmodiba.tumblr.com ]

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A poem.

Explaining My Depression to My Mother by Sabrina Benaim 

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Hi, I’m depression, it’s nice to meet you.

It’s a Thursday afternoon. I’m in my friends res, roaming the corridors, sobbing my heart out, telling my life stories – drunk out of my mind. I’m drunk on liquor, but I’m drunk mostly on this sudden heaviness in my heart that keeps gnawing at it and won’t let me go. It grows heavier by the day and I’m trying hard not to let the sadness settle, so I’m drinking more. Living recklessly in hopes that I’ll feel physical pain and everything else will fall away.

But depression doesn’t work like that; it doesn’t want to have to fight for a place in your life because then it shows up and shows out. It doesn’t want you to be able to tell people what you’re going through or how you’re feeling; so it brings its beloved friend, anxiety.

On this night, I finally meet them and the introduction, accompanied by liquor, is all too overwhelming. Little did I know that this encounter would change my life forever and I would carry my dear friends with me for as long as I roam this earth.

So I’m crying. Uncontrollable, hysterical sobs. There are friends asking me to pinpoint what exactly is wrong, so I cry even more because I’ve said all the things on the surface, but there’s so much more that I couldn’t find the words to perfectly describe.

So fast forward to two years later, I’m sitting in a shrink’s room because my beloved friends wouldn’t let me go, they were demanding every single bit of my time, spare or not. They were taking up parts of my mind, body and soul I didn’t even know existed. So something had to be done.

I’m sitting in my shrink’s room, I’m running words through my mind, trying to figure out how to make it clear to her that I’m not crazy, the voices in my head aren’t loud enough for me to be crazy. So she’s asking me questions about my life, from my childhood, current life both at home and at school, my love life, my relationships and my health and everything in between. I’m tiptoeing around certain issues because I’m trying so hard not to sound crazy.

It was only a few sessions in, when I sat in that chair and I burst out crying, finally understanding what she had been trying to make me understand about myself. It had finally hit me. It finally sank in, why I had spent so many nights looking for happiness at the bottom of bottles of vodka. Why I would skip class and stay in bed all day, crying, for no apparent reason.

My beloved friends were here to stay, and I needed to embrace them. The more I tried running away the more they came running after me. So I dug deep and attempted to embrace them, as I would any other person I had just met. So I reached out and shook their hands. “Hi, I’m Azande, it’s nice to meet you. Please be kind to me.” And they did the same embracing me with a “Hi, I’m depression, it’s nice to meet you.”

So every time the going gets tough, I always imagine the first day I sat in the shrink’s office and she told me I had clinical depression. I think of that first encounter with my friend whom I know all too well now, and I try to remember how “gentle” she was when she shook my hand the first day we met. She only engulfed half of my soul. It’s only now that I’ve let her stay that she feels like she owns my heart.

Depression is a bully, it’s a thief in the night, it’s a foe, it’s a fiend and it can very well be a friend.

Hi, I’m Azande, I suffer from depression, it’s nice to meet you.

Azande Kubheka recently turned 23 is outrageous & outgoing in the most infectious ways. A UCT graduate now currently studying her Honours in Sociology at UKZN. She spends her time listening to James Blake & constructing her feminism.

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I’m ill.

Literally ill, as I sit here on medicinal stark white linen at Westville Hospital. What I had thought was a stubborn flu or cough turned out to be pneumonia. Prior to the diagnosis, everything in my life was nothing short of phenomenal. Sickness can creep on you and sometimes sickness can also come to stay. In my case it is both: I am surprised at the pneumonia but being HIV+ for the last nineteen years I’ve always known sickness follows me like shadows. What those shadows have taught me is that sickness is very close to our humanity. In matters of health and illness, though the body is the primary subject of scrutiny, the body is also a home for the soul. Therefore any fight against illness is strife to keep one’s soul in the body.

As long as I am still alive, I am winning the battle but by no means has it been easy – mostly it has been emotionally and psychologically taxing. Never mind the stigma attached to my illness – people generally do not like talking about ill health, not family, not friends and especially not potential partners. What I’ve noticed is that the common assumption is that it will jinx the situation and call death sooner. Also generally it is not a comfortable topic. What we have done to try to make it more comfortable to talk about is generate stock narratives that are told over and over again by government, media, NGOs and us, individuals in society. Whilst these narratives are not a lie, the problem is it becomes the only story – a story devoid of nuance and often emotion.

Take for example the common HIV narrative. It is the story of a promiscuous guy or girl, irresponsible enough to not have used a condom and who is doomed to a life of ARVs. Whilst it is true that HIV is sexually transmitted and we should all wear condoms, this narrative has been pivotal in framing HIV more as a character flaw or a moral shortcoming rather than a disease. Also as an HIV positive person, I can tell you that ARVs are not the happy ending they are so often made out to be.  I am grateful to science for its provisions but they are so very difficult to take consistently - at one point in my life I was taking ten a day, and with this came the side effects of nausea, diarrhea & jaundice.

My preferred means of healing is in expressing my illness.

In my second year of varsity I began writing down my confusions, pains: little things and big things that affected me about being HIV+. It was so emancipating to me even though I was not sharing it publicly. This is what ignited iLL - a platform for people to express their experiences of diagnosed disease. It is not a project that invalidates the medical methods but counts the individual and emotional definitions as equally important. It allows people to write their own definitions of sickness, health, weakness and strength. It is also about opening up dialogues of how these definitions may clash or even intersect with those that society has already put forward. iLL is creative at its core.Though the stories are not fictional it aims to present illness in ways that are uncommon. iLL rests on the pun of being literally physically and/or psychologically sick and “ill”  in the colloquial sense of being cool, dope and unusually bizarre. Simply put, it is a young fresh take on disease.

The hope is that those with diagnosed diseases are free to not only talk but to take hold of their illnesses without shame or insecurity. For many sick and “unsick” to come to realise that illness is a human experience to be expressed in the same ways we would if it was love, hate and growth.

Kundai: Conquer

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Self-care and healing have been written out so many of our cultures and yet are critical components of how a human being stays alive.

Nayyirah Waheed  

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Photographer battles his own demons to create a visual diary of mental illness - The Daily Vox

Photographer TSOKU MAELA, who suffers from manic depression and anxiety, has visually interpreted the different stages of depression in a photo series called “Abstract Peaces”. The series aims to challenge the stigma about mental illnesses in the black community. He spoke to Mbali Zwane about the inspiration behind this project. I’d describe mental illness as ...

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Lovesick?

Have you ever had an asthma attack while you were on a date?

Or have received a fancy box of chocolates on Valentine’s Day but you couldn’t eat them because you are diabetic?

Perhaps you would love to be surprised with a beautiful bouquet of roses but your allergies make it unbearable to be anywhere near pollen.

It could be that potential bae inviting you over for “Netflix and chill” but you haven’t had a chance to discuss your HIV+ status.

And how do you explain to your partner that your bipolar disorder diagnosis doesn’t mean you’re just moody?

We all have dating horror stories some more funny than tragic and we all know that relationships can be complicated and messy. How different is dating when one (or both) of you has a chronic illness or a condition that means you are differently-abled?  

Share your stories with us as we celebrate Valentine’s Day! 

Spread the LOVE!

Be sure to tag us #iLLSCRIPT and #LoveSICK! Happy Vaelntines Day! ❤

* If you wish to remain anonymous, please feel free to send us an email or submit an answer anonymously on Tumblr. 

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Leprosy, one of the oldest recorded diseases in the world, is often associated with biblical stories, which is not surprising considering that it is mentioned a total of sixty-eight times in the holy book. Unfortunately because of this association, the only time that many of us encounter this disease is in the pages of an ancient book and we rest under the assumption that leprosy no longer exists.  

With an uncanny foresight about prevailing attitudes towards leprosy and a need to raise awareness, a French philanthropist and writer Raoul Fallereau initiated the World Leprosy Day in 1954 to raise global awareness and ensure that people understood that it is preventable, treatable a curable.

Sixty-two years later, lack of awareness and ignorance is proving to be the biggest obstacle to eradicating the disease. For many communities around the world, leprosy is still seen as a curse or a punishment for sins (as is sometimes interpreted from the Bible).  This results in people hiding their symptoms and failing to seek treatment in fear of being cast out or disowned.

In South Africa, stigma is not as rife as in other parts of the world according to Peter Laubscher, the director of Leprosy Mission in Southern Africa. There are a few occurrences of people being cast out and disowned but for the most part people with leprosy are accepted and well integrated. This may also be due to the fact that the disease is rare, as Mr Laubscher explained: “We are winning the battle with leprosy but there is still a way to go.” South Africa has seen a decrease in leprosy cases. The specific challenge within the South African context is that leprosy cases occur in rural and isolated areas far from treatment and healthcare resources.

The preventative treatment for leprosy which has contributed to the decrease of cases is Bacillus Calmette-Guerin (BCG) commonly used as a vaccine for tuberculosis. For those already showcasing symptoms of leprosy, it is easily curable with multi-drug therapy – a combination of rifampicin, clofazimine and dapsone tablets taken for six months to a year. If diagnosed late, leprosy can cause disability.

It is not fully understood how leprosy comes about or is transferred but contrary to popular belief it is not passed through touch. It is believed only consistent contact with nose and mouth droplets (sometimes sneezing and coughing) from someone with untreated leprosy may play a factor in spreading it.

What is known about leprosy is that it is a chronic infectious disease caused by Mycobacterium leprae which affects mainly the skin, peripheral nerves, upper respiratory tract and the eyes. No pain is felt by the patient, therefore burns to the fingers, cuts to the foot, grit in the eye can go unnoticed leading infections that untreated can result in amputation or blindness.

Peter Laubscher encouraged and emphasised that if anyone presents with signs of leprosy, they must come forward before it is too late for treatment to be effective. The treatment is free of charge through the Leprosy Mission.

For  more information about leprosy visit : www.leprosymission.co.za or e-mail the director [email protected] and also check out all the individual stories of patients who are fighting and overcoming the disease in order for it to truly be a phenomenon of ancient biblical times.

Sources:

Leprosy Mission UK (2016, January 28) World Leprosy Day: Eradicating Leprosy Is Not A Pipe Dream. via  www.leprosymission.org.uk

Mr Peter Laubscher: Executive Director of Leprosy Mission South Africa

Image: via  www.womeninthebible.net/1.7.Miriam.htm by Unknown

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Introducing iLL 

In matters of illness the body is the subject of direct scrutiny and rightfully so; it is vitally important for one to have a fully functional home. That is what a body is – a home for your soul, and ultimately the fight against illness is strife to keep one’s soul housed in their body.

Staying alive is not just a biological or physiological endeavour but it is a process of self-care and often of healing that encompasses far more than our physical bodies. Sickness is a part our humanity. It is an aspect of our lives that often challenges us to contemplate how our bodies, minds and souls constitute a whole human being and leads us to question our very existence; by bringing our mortality into sharp focus.

Self-care and healing have been written out of so many of our cultures and yet both are critical components of how a human being stays alive. Self-care and healing must go beyond a doctor’s prescription.  One can and must define healing for oneself, as it requires more than what “medicine” can provide. True healing, that results in holistic wellness, demands that questions be asked of oneself in ways that medicine often cannot or does not.

We all experience our humanity differently; those who are classified as being clinically unwell will experience, and inevitably engage with, their diagnosis dissimilarly.

iLL is a non-profit project that creates a platform for people to express their individual  experiences of diagnosed disease. It is not a project that invalidates medical theory or methods, but seeks to include the narrative of the individual. It acknowledges that the definitions that arise from lived experience are equally important. It allows people to share their own definitions of sickness, health, weakness and strength. This project creates a space for dialogue on how these definitions may vary, clash or intersect with the widely accepted definitions and expressions that have dominated the narratives of health.

iLL is creative at its core. The stories and experiences are not fictional and it aims to present illness in uncommon ways. The name iLL rests on the pun of being literally sick (physically or mentally) and ‘ill’ in the colloquial [read Urban dictionary] sense of being cool, relevant, impressive or current. Simply put - it is a fresh perspective on malady, that allows new and interesting definitions and understandings to be explored and communicated.

The hope is that those with diagnosed diseases are free, not only to speak about their illnesses but to take hold of them without shame or insecurity. This allows us to come to the realisation that illness is a human experience that can be delivered in myriad ways. Illness can be thought of critically as a concept, but we can also grapple with it artistically through music, movement, or the visual and literary arts. Love is a human experience that is understood and expressed in diverse ways that we can engage with from classical to popular culture. Our intent is that with iLL we will have a creative space for atypical narrations of the human experience that is illness.

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Take a listen. Take encouragement.

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Brandon Vosika

Shake Well Before Use: A Book of Paintings About Asthma

Top: Brandon

Middle: Our Lungs

Bottom: Adavair

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Before iLL had a name or a site I did what any self-respecting millennial would do before embarking on an idea - I Googled. I typed in a lot of arbitrary phrases relating to health, illness and the expression thereof and while I was lost down the Google rabbit hole, I came across Brendan Vosika’s Kickstarter page, (the internet really is a beautiful place). 

Brendon Vosika is a Seattle-based artist who specialises in painting, collage work and illustrations. His Kickstarter project that caught my attention is titled “Shake Well Before Use: A Book of Paintings About Asthma” which is a handmade book expressing his experience of living with asthma through water-colour work. I immediately reached out to in the hope that he would agree to be the first to share his narrative with iLL and explain how his work helps to express his lived experience.

Read our conversation below:

Hello Brandon Vosika, firstly thank you for participating and giving us permission to showcase your art and story.

 1. Having first encountered your art pieces, I found the art was simple and genuine. The simplicity of your work is very honest. As a first question, how would you describe yourself and your art?

 You're right! I would describe myself as a person with somewhat simple tastes. I love art, film, music, literature… I'm a painter, illustrator, collage artist. I dabble in a lot. I used to record music and have made several albums also! But that's the past.

Some of my work is indeed simplistic or minimalist but other pieces can be quite chaotic and full. It really depends on what you're looking at. It is all honest though. For the asthma themed art, it was all watercolour on drawings. They were pretty straight forward but the paint was used very effectively.

 2. As iLL we were particularly intrigued by your project “Shake Well Before Use – A Book of Paintings about Asthma” a handmade art book and set of prints for anyone with awareness of asthma. Please tell us what sparked the project and how it came to be?

 Well, I had to go to the ER for my asthma a couple days after Christmas and when I left I started drawing a lot of asthma related stuff. Then about a month later I sort of realized that no one was doing any art or expressive things on the subject of asthma. I was literally goggling it and almost nothing was coming up. Millions of people suffer from asthma so I was surprised. I don't know, I just thought it would be a cool thing to do. To mix painting and art with facts and learning about the disease. I like to make little art books, so I thought why not? I did a limited run of 200 of them and funded the project through Kickstarter. It was a very successful project.

 3. Describe the technicalities behind how you made the handmade art book, as in the methods and art techniques used in your paintings? Do you usually favour this method of producing art and what were the difficulties you may have experienced in making the handbook?

 Painting the initial art was great; I used watercolours on pencil / pen drawings. I used a lot of feel colours and quick drying; I think they came out great. The construction of the books as a whole was extremely time consuming and a ton or work. Hand painting every cover took me forever and it was very tedious. Also I sewed the bindings of the books with a sewing machine which took a lot of time. There were also two pages that were done with stamps that I made… stamping, letting the ink dry… doing it all hundreds of times was a little bit crazy.  Also signing and numbering everything was really tough. With the prints and books I had to sign and number 800 individual items. That was a pain; it made me hate my name. Not to mention 600 of those signatures were VERY tiny.

 4. You mention that you have had asthma for 22 years. Describe how you experience the disease, the pro and cons, any stories?

 It's been 23 or 24 years now, 22 when I made the video for the asthma project. My experience with asthma has been rough. I've been to the ER a few times; I use my inhaler at least a few times every day. I used to be allergic to everything. I don't have as many allergies now but stuff still gets me. Getting sick with a respiratory cough is a big concern. Something that's a pain in the neck to one person could end up sending me to the hospital. Also because I have sports induced asthma, It's really hard for me to get excursive without an asthma attack. The only pros I can see would be that having asthma as a child taught me patience which I implore every day of my life. Unfortunately there are too many cons to list. With medication and health care being as corrupt and expensive as it is in this country, it's difficult for me to get the stuff I know will make my life better.  I remember when I was 8 years old or something I was having an asthma attack and was out of medicine. I didn't want to tell anyone. I was embarrassed. It got really bad and I know I easily could have died. Things like that used to happen a lot to me when I was younger; I was a really shy kid. I think back now like, god, that was terrible.

 5. Beyond the “Shake Well Before Use” project does asthma affect your art in any other ways (artistically or physically)? How does your disease tie in with your art?

 Generally speaking, asthma doesn't tie in with my work. I am an artist with asthma and I did an asthma art project but I'm not like, an "asthma artist" or something. Sometimes I'll draw inhalers or things in a painting, around a person’s head or something but it's not really the theme or anything. Since the project I've done a ton of art but not much that focuses on asthma the way the book did.

 6. Many artists say they use their art and expression as a form of healing. Is that the same for you and if so how?

 I guess you could say that. I used to be very unhappy and painting or recording music would sometimes make me feel better. Maybe that's why I started, just to have an outlet for what I was feeling. But now I think that it's less something I do as a form of healing but more just a way of life. Art is always on my mind. It's mostly what I think about. It's not that it makes me feel better to make art, more that if I don't I mostly feel like shit. At some point it stops being "that thing that makes you feel better", it just becomes you.

 7. Are there any other projects in store? Please let us know where we can find and buy your art.

 Yes! There are always more projects! I'm constantly working on new paintings, zines, and drawings, whatever really… The asthma art book was all handmade by me and very limited but I still have a few of them so you can grab one of the few copies left in my Etsy store for the time being. www.etsy.com/shop/BrandonVosika

 I sell some prints and things on the Etsy store but most of my work is sold in person around Seattle, where I live. I'm going to get some more original work in the Etsy shop though so take a look. I also do commissions and work for others. Send me an email [email protected] and support me!