(in)visible illness

 

 

 

ARTIST’S STATEMENT:

Taking inspiration from Jo Spence’s self-representative photography collection, Narratives of Disease (cw: nudity), I wanted to provide insight to my relationship to and with chronic illness using both photography and my body as materials to present my lived experience. Through these photographs, I illustrate six specific themes or emotions that are most prevalent in my life with illness. My intention with this collection is to both respond to Spence’s work, regarding her artistic expression of what it truly is to live with illness, outside of the objective language of medical environments, and to portray the complexities of my own journey as a chronically ill individual. Specifically, I hope to demonstrate the ways my so-called invisible illness marks me, both physically and emotionally; to resist the objectification of medical and other social institutions; to make meaning of my experience, both for myself and to connect with others who face similar experiences; and to ultimately, narrate my disease, in a way that allows others to understand the often arduous reality – both physically and psychologically –  of living in a chronically ill body.

art & illness

There are several artists I’ve paid special attention to in one of my (arts-based learning) classes. I feel like Karolyn Gehrig needs to be mentioned, along with her #HospitalGlam project, because the idea behind it, of making invisible illness visible, has been something I’ve wanted to work with for a long time. Here is more on her & #HospitalGlam (http://hospitalglam.tumblr.com/)! So check that out if you’re interested! It’s an awesome project and so empowering.

However, for my major project, I’ve decided to take my inspiration from Jo Spence. She was a photographer, feminist, writer, organizer and broadcaster. In particular, I am looking at and responding to her collection Narratives of Disease (click to see her collection – NSFW/nudity warning though!).

Spence captioned the collection as such:

“How do we begin to speak about what it is like to live with cancer? How do we find a language to express ourselves? What are we able to say if we turn to the medical language of tumours, drugs, and surgical procedures: a language which is crucial to medical professionals in helping to diagnose and treat cancer but which can only speak of people as mechanical objects? Can we make use of the non medical language of bodies which is obsessed with the idealism of youth and beauty?”

I was compelled by its description alone, not to mention the piece itself. I was compelled by the photographs, by the unfolding of a story, a life, a struggle, told through only six photos with single word captions.  Her idea of not being able to express her experience with language resonated with me, and I decided I wanted to work with the themes and artistry she employed in this collection. There’s a lot to unpack in her work.

Her images really tell a story, of living with illness, and knowing, that because of the illness, she becomes an object in the medical setting. It explores the objectification of women regarding beauty standards and how illness physically marks the body and our life experience, and renders us as something completely apart from these beauty ideals.

A few things stuck with me, and translated into a focus for my artistic response, or remix project…

  • pain of illness as emotional and physical (this is a big one for me, in medical environments! no one ever checks in my mental health, just my physical symptoms and medicine dosages etc….)
  • body as a material site of struggle and resistance
  • meaning making of chronic illness through art
  • using art to describe a narrative of illness
  • physical ideals of beauty versus reality of a chronically ill body

Soon – my own narrative of disease start to emerge, from abstract concepts to the planning of the photographs I would take. The process involved a lot of questions though, questions like what words or themes are prevalent in my journey with illness? How do I express these?  How do I make sense of pain, specifically, with my diagnosis of diabetes… How do I make sense of both the physical and emotional pain that comes with it, and transform it into an act of resistance, as Spence has? Is there any way to transform it into something positive? How do I communicate what it is like to live with a chronic illness, how do I represent the complexities of my experience in a way that allows others to come to understand it as well?

This was only the start of my thought process, and now, as I finish planning for the shoot that I will be doing tomorrow…I feel like maybe I’ve found some answers. And of course, more questions. And I know the process of actually making artwork will bring new insights and maybe even more questions yet!

Already, I have felt how thinking about these ideas, thinking about my own experience of illness,  and how to turn this experience into art, has transformed the way I think. I don’t always see my necessary medical self-care as a burden, but as something worthy of art – and this has totally reframed the way I understand myself as chronically ill but also how I relate to my illness. It’s been really exciting and uplifting.

I’m not going to say much more… as I’ll probably share my collection of images when I have completed this project, but I will say that planning the shoot was a lot more than just logistics. It has been a process of finding six words that encompass my life with chronic illness. But even moreso, it has been a process, a challenging process, to figure out how to bring these emotions and experiences into being: how do I represent the complexities, all the intricacies, with one photograph? How does it go from being an idea to being a collection that is honest, authentic and vulnerable? I have rolled through every possibility time and time again in my head, and come up with what I hope will be photos that do express all of these things. I know my ideas will change and transform during the photoshoot, and that’s awesome and exciting too. I’m excited to see the results of this process, of what I will learn and how I will grow, and of course, to have the finished product and to share it with others.

I know this has been a long, rather involved post, but I thought blogging would be a good way to both reflect on this process and also tell you about it, so you have some context when I share it.

I’ll leave you with a sneak peak of what’s to come – my working title, project description and the title of each photograph as it stands right now:

Along the lines of Jo Spence’s work, Narratives of Disease, where she uses six nude photos, each titled with one word related to her journey with breast cancer, I would like to choose six emotions to tell of my experience with chronic illness, through photography. As Spence puts it, this photography is a way of challenging and expressing what it is to live with illness, in an environment saturated with medical language and objectification – both in medical settings, and as women in public spaces. I would like to address my experience with chronic illnesses as a whole, but also specifically focus in on the way diabetes marks my body, and my way of being, in ways that are often invisible to others, but brought to light through my photo series.

The series will be titled (in)Visible Illness, and will consist of six photos: submission, defeat, haunted, guilt, glorified, and finally, hope. 

Looking forward to tomorrow and sharing my work with you all 🙂

 

jc. ♥

why i took a break from social media 

After taking a much needed break from in Instagram in November and December, I decided to write a follow up post to this one, where I talked about social media + authenticity. As with everything, I struggle with anxiety and overthinking things that are seemingly as simple as social media. So I’m going to write about what led me to take a break from social media, and how I went about returning to Instagram with a healthier mindset.

The anxiety and overthinking of my Instagram presence is something I often deal with. It seems to be ridiculous that it can be such an issue for me, because it’s just social media, right? But. Not always. It’s a really big part of most of our lives, in all honesty, and I think something we should be mindful about. I would take and retake photos, and edit and re-edit them, continually. Half the time I posted a picture and took it down a few seconds later because it wasn’t getting the reaction I wanted or for some reason I was self-conscious about it or whatever. Dedicating this much time, thought, and obsessing was not doing anything for me but making me more anxious and more frustrated with myself. Why couldn’t I just post a picture and have it be that simple?

I tried to be honest on social media with what I posted, because I was aware of how easily Instagram can affect one’s mental health when they compare themselves to the perfectly polished pictures on their feed. However, no matter how hard I tried, there was always a layer of playing pretend – exactly the opposite of what I wanted to be doing – in order to “curate” my feed for a certain aesthetic.

I listened to a thought-provoking interview about how (millennials especially) are so submersed in a culture of instant gratification because we grew up with increasingly more accessible technology and media. But this doesn’t actually translate to the things that actually make people happy, like building relationships, or a career, or any other milestones that take a lot of patience and time. I couldn’t find the interview again, but this article articulates the same idea if you want to read about it!

So. I decided I need a break. The only time I logged on to instagram was once in a while from my laptop where I was unable to make my own posts but I could still use the opportunity to see what my friends were up to and comment on their posts.

When I ended my break, I knew I had to change my mindset. So I followed people who were using their platform in intentional ways – whether it be for advocacy or activism, simply spreading positivity, offering support, building community or simple being honest about their posts and their experiences. I unfollowed anyone that I knew I would only compare myself to. I tried to come up with other strategies to combat posting simple for likes or whatever else…I thought maybe I’d try to write poems that represented the pictures I wanted to post or my day, and only posting infrequently – but that just felt like making rules, which was a habit that I felt was still rooted in anxiety.

What did work for me was this:

  • I turned off my push notifications for likes. It allowed me to forget I’d even made a post, and even better, without constant notifications, I was not tracking the number of likes or people’s reactions. I kept comment notifications on so I could still interact with people in a timely manner.
  • I decided to post “intentionally” – and to me this means not posting just for the sake of posting, but thinking about why I’m posting what I am and what my purpose for posting it is. (Am I posting this because I know people will respond to this? I am posting this because I know it will look good with my feed? Am I posting this just because I haven’t posted in a while?)
  • I changed my bio on instagram to say “trying not to take myself so seriously” as a reminder to do exactly that, every time I viewed my own profile or was tempted to scroll through my profile to see how my feed looked
  • As soon as I started to overthink the aesthetics of any post I was about to share, I paused. I reframed my thought process. I reminded myself of this idea of posting with intention. I reminded myself why I took a social media break in the first place. If I couldn’t curb my overthinking, I just didn’t share the post.
  • I decided to only allow viewers’ perception of my posts to influence my choice in sharing content if I knew it would mean something positive for them (ie, being real or relatable. seeing a pretty rainbow hallway and wanting to “share the feeling” of being happy about simple things)
  • I allowed myself to make choices about aesthetics only in that it was a way to have a creative outlet, to practice taking pictures, or simply for the sake of documentation – not because I thought a post had to look a certain way to be appreciated or valuable.

Overall, this has been a refreshing and beneficial process for me. I don’t feel like I need to “compete” on instagram, or to post pictures that make my life look more luxurious than it is. I remembered that social media was created to connect with people, and I kept this in mind. I wanted to build community, have content that lifts people up instead of contributing to self-comparison. I realized how social media can be so powerful in so many different ways, both good and bad, when our lives are saturated in image-heavy culture. We have to be careful and critical about what we take in, what we share to the world and how it shapes our thoughts and behaviours.

Instagram is now a platform in which I feel inspired, empowered and hopeful when I use it and a lot of this has to do with who I follow and the messages they are sharing.

 

that’s all for now!

jc.

social media + “authenticity”

Maybe this topic is past its prime. But it’s something I think about a lot, and I still find it is relevant, as long as we are using social media, so I am going to write about it.

I find the idea of authenticity, in the sort of buzzword way, very intriguing. What do we even mean when we say “authentic”? At this point, I’m not entirely sure.

It seems that most of us are striving for some sort of authenticity in our lives, especially in our online presence, yet we are flooded with posed, over-edited and carefully cultivated representations of our lives on social media. Is this really genuine? Is it real?

I don’t mean to say that it’s wrong to post a picture just for its aesthetic value or for validation or to post a smiling selfie when you’re feeling sad. Social media is just as much for self-expression and creativity as it is anything else. Make it your own and do whatever you want with it.

I just question the narrative we create with a stream of idealized photos, often literally cropping out any less than perfect elements to frame the perfect moment, even if the moment we are capturing is far from perfect. What parts of the story are being left out?

I know that there definitely is a movement, a push, for honesty in what we post online, and I appreciate this. It is so hard to move against the grain, to be vulnerable. I value all of the hard work people do to create a presence that is real, that is truthful, that highlights the lows of life as much as it does the highs. I think it’s so important to have this, to remind people that social media is often framed in terms of what people think the world expects of them, not a reflection of reality. We are all far from perfect but we often like to pretend otherwise.

And no, I don’t have a problem if you only want to post pictures that are of those perfect moments. There’s nothing wrong with sharing happiness, or photos just for the sake of sharing photos. We do, however, need to remember not to compare ourselves to what we see online – and I know this is underlined over and over again – but it’s true. It’s too easy to take photos at face value and accept them as truth. This is rarely the case. Social media should come with a disclaimer, but it doesn’t. So it’s up to us to be honest with what we post, or to be critical about what we see when we are tempted to measure ourselves against the photos saturating our feeds.

I’m definitely not exempt from this falsified story-telling. A few weeks ago, I posted a colorful, inviting shot of the city and the river (it’s the feature photo of this post!). What the people looking at the photo couldn’t see, however, was the tears on my face as I took it, or the hour leading up to that, which consisted of a disheartening doctor’s appointment, some serious self-doubt and questioning of myself in almost every aspect imaginable, and the resulting flood of tears I couldn’t seem to stop or hide, as I walked down Main Street, trying to force a smile and hide my tear-streaked cheeks and puffy, red eyes. Honestly, I think I posted the picture as a way to make myself feel better. I don’t know if it worked, but I know I am prone to posting a photo on social media that represents the complete opposite of what I’m feeling, and I don’t know, maybe it’s a way to cope sometimes. But I’m not sure that’s the best solution.

I have been trying, lately, to be more honest with what I share. It’s so hard to do, but I’m going to keep trying. That’s part of why I started this blog – to narrate my life in a way that is honest and real.

Keep posting whatever you want, of course. I’m not trying to criticize anyone, I just think we need to take the time to question both what we post, and what we see.

 

Ultimately, what story are you telling?

And is it the story you want to tell?

 

& with that, have a great week friends,

jc. ♥

rings! photos! family!

So, since I didn’t manage to get a post published yesterday (busy Thanksgiving weekend!), here is my sort of catch-all update post before I go back to writing pre-scheduled posts on specific topics!

LIFE UPDATE: Most who know me personally will already know this – but within the past week, Sky and I got engaged! It was a mutual proposal, however we both proposed on different days (let’s be honest – it was as basically as soon as we had the ring), in the comfort of our own apartment and so many happy tears were shed. I am so excited to be on this journey with her and while we are currently just enjoying our engagement, I will be sure to share details as we decide on wedding related things as they come up! We have a late summer/fall wedding in mind, however not for a few years! I am so incredibly happy to have found Sky, and to get to spend my life with her. We are thinking of doing a winter engagement shoot, however, for now, enjoy a few pictures we took ourselves!

I’ve spent the last couple weeks brushing up on my photography skills, only a few months after seriously considering selling my camera. I didn’t, luckily, since I now I have caught quite the photography bug. I took pictures of Sky with her engagement ring, and then with my sister, Alexa, and am very happy with how they turned out! I have found myself itching to take more pictures, researching techniques, obsessing over established photographers, and wondering if this is something I could one day do professionally. For now, I am just going to enjoy taking pictures for myself, friends and family, build my portfolio, and maybe attend some workshops! I’m having a ton of fun with the whole process, and I’m looking forward to learning more and improving. I’m doing a shoot with my friend and her boyfriend in a week or two and hopefully that goes well too 🙂

 

Overall, this weekend was a very exciting one, a very happy one, and I am so thankful for the life I have and the beautiful people in it. It was amazing to feel so supported by our friends and family when Sky and I announced our engagement, and the mutual excitement was contagious. It was great to see my family this weekend, to return to my childhood home and to bask in the familiarity of the chaos that is our reunions, their witty jokes, sibling banter, to enjoy each other’s company, to capture candid moments; to laugh and smile and love and feel so loved in return.

Sky and I also hosted our first Thanksgiving dinner with her family, and it was so lovely to be able to have her family over at our place and to host our first dinner! Sky did an amazing job cooking and there were many laughs, memories, and wedding ideas shared.

 

Now to use reading week to my advantage and get ahead on my assignments! and to write a few more blog posts to be posted at later dates!

love,

JC.