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. ♥

we do not always look like the heroes you want us to be

I know I said I’d write a post on epilepsy awareness. But this has been pressing on me, so it is taking precedence. Firstly – after having tried to edit this for coherence, I am going to state this: This may read more like a diary entry, of scattered, unorganized thought. But. There have been a lot of things on my mind that I feel need to be expressed, and publicly. So, prepare yourself for some honesty and some disorganization in my writing!

I’ve been doing a lot of reading about disability, from a social perspective, for research purposes. But some of the points are hitting home, and hard.

A concept raised is the “supercrip” or the concept of a person with a disability or other related illness having to have some extraordinary ability to compensate for their disability. It is expressed by Ann Schmiesing, as read in Disability, Deformity, and Disease in the Grimm’s Fairy Tales:

The supercrip…represents overachieving, over-determined, self-enfreakment that distracts from the lived daily reality of most disabled people.

My first reaction was, in capital letters in my notes: “WE DO NOT ALWAYS LOOK LIKE THE HEROES YOU WANT US TO BE.”

I am no different than any one else. I get through each day with one foot in front of the other, one day at a time. I didn’t choose my reality. It doesn’t look like “overcoming” my illnesses to get my happy ending. It looks like living, despite the frustrations, the limitations, the stigmas and every other high and low that comes with being chronically ill. I do not exist to be strong or inspiring to others. I exist for myself.

But still, I don’t know.  This concept of having some sort of compensatory characteristic to make up for my illnesses makes me uneasy. I guess I feel that it’s imposed on me.  I impose it on myself, perhaps, and others (maybe others in a perceived sense…) come to expect it from me. Specifically, I question its relevance to my high standards for myself. The question is this: Do I set my standards so high because I feel the need to compensate in some way, shape or form, for being chronically ill?

Or does this need, or expectation, for myself to be the very best come from somewhere else?

The answer?

I honestly don’t know. I think it’s a thing that is pushed on a lot of us, from many different sources, both systemically and individually. I don’t want to start talking about capitalism, or the education system, or social media, or whatever… I mean. It’s all there. We all live through the experience of feeling like we aren’t enough – feeling like we have to be everything at once and above all, productive and successful in measurable means, and somehow, we are always failing. Or so we think.

It’s a toxic thing.

But. Let me stop rambling. I am thinking about a lot, and I am trying to lay bits and pieces of it down here. For your understanding, your consideration, and for my own.

I guess – the takeaway point from this, the reason I am posting it publicly, is that I want able-bodied, “healthy”, people to understand this: disabled people, or those who are chronically ill, or otherwise not able-bodied, do not exist for your inspiration. We do not have to “overcome” our health complications to be happy, or to be successful. We do not owe it to society to be successful or productive in a manner that is valuable and measurable within capitalism. We should not have to be “supercrips” to be accepted. We should not have to compensate for the circumstances of our body that are out of our control. We should not have to change ourselves to meet society’s abled-bodied standard to be accepted. Society should change to be accommodating and accessible to people of all abilities. We do not have to throw ourselves into our passions or pursuits to cope with the struggles of our lived reality.

We are enough as we are. And we do not have to be inspirational, or strong, or constantly challenge our boundaries to be acceptable; to be valid in our identity.

We are not always “okay”. We are allowed to not be okay.

I’m tired of the facade.

I am not always strong. Not in the way you think I am.

I am not inspirational.

I am always tired. I am often frustrated.

But I am always enough.

 

 

love & spoons,

jc.

 

 

 

 

Diabetes Awareness Month: Part 2

The great debate: Is diabetes a disability?

Every document, or theory about disability, that I’ve ever read mentions diabetes as a disability, as kind of a “hey, bet you didn’t know this is a disability too!” way, after listing what our common perception of disabilities are. However, in reality, it apparently isn’t so straightforward.

At my last endo appointment, I brought paperwork to apply for both for the disability tax credit and a grant for students with permanent disabilities. My doctor said she would willingly sign the tax credit application, but not the grant application, because “diabetes isn’t a disability”. Not sure exactly where the logic is in that, since apparently it is enough of a disability for me to apply for the tax credit…but not qualify for a grant?

However – the catch with the tax credit is that type one diabetics have been turned down in great numbers for it within the last couple years. To be eligible, you have to have a disability that demands at least fourteen hours of life-sustaining therapy per week. Technically, my disease requires life-sustaining therapy 24/7, but the interpretation of what constitutes said therapy has changed. They allow you to count time that consists of switching out pump supplies, or pens, taking your blood sugar, logging your blood sugar, but don’t allow you to count some of the things that take the most time and energy, such as counting carbohydrates, calculating insulin dosages, travelling to medical appointments, treating and recovering from high and low blood sugars and picking up medication, among many others. I can’t remember all the specific details, but it is ridiculous. Diabetes is a disease that requires constant, attentive management, but the requirements for the tax credit do not take this into account.

I still sent in my application, even though my doctor said it takes “creativity” to come up with a care log that meets their standards to even be considered, and then often, they reject the applications because “diabetics shouldn’t need to spend fourteen hours a week managing their diabetes”. I’m calling bullshit on that!

Thankfully, representatives from Diabetes Canada and other organizations are working hard on our behalf by lobbying for more inclusive and fair consideration for diabetics regarding eligibility. I have done my part by sending a letter to my MP, and I hope other diabetics are doing the same!

I also hope, that by the time my application is processed,  maybe the government will have re-evaluated their standards. Or at least, that they will compensate all of the rejected applicants that so deserve this tax credit.

Diabetes is a permanent, exhausting and demanding disease. Not to mention, extremely costly if you don’t have full coverage for prescriptions. It takes a lot of time, effort and careful management to maintain healthy blood sugar levels, and even then, this disease is so complex that half the time your best efforts don’t play out the way you hope. It’s frustrating, and sometimes feels quite futile. Diabetes is finicky, inconvenient at best and relentless. And diabetics have to be relentless to stay on top of it.

To me, the tax credit isn’t even about the money (though, as a university student, a few extra dollars is always appreciated!), but about the recognition of all the time and effort that goes into my healthcare on a daily basis. The current system really makes me feel as though everything I do to manage this disease isn’t legitimate, or appreciated in the slightest.

Something needs to change and soon!!

As for the grant for students with disabilities, and my doctor’s refusal to sign for it – well, that’s a whole other rant I don’t have the energy for right now. But in the end, my GP signed it because I do have other disabilities. It still shouldn’t be a question though. Diabetes impacts my functioning and ability as a student on a regular basis, so why is it not considered a permanent disability in relation to my studies? I know plenty of other diabetics apply successfully for this grant, so maybe (and I do, and I will) need to see a new endo. (this situation only fuels my “I’m too sick to be considered healthy but too healthy to be considered sick” internal conflict that I struggle with. but that’s another post in itself!)

anyway.

end rant.

and oh yeah! tomorrow is World Diabetes Day so wear blue to show your support!!

best,

jc.

 

 

 

 

 

DIABETES AWARENESS MONTH: Part 1

Coincidentally enough, November is both Diabetes Awareness Month and Epilepsy Awareness Month – and I happen to have both conditions!
So I’m going to dedicate two posts this month to Diabetes Awareness Month, and two to Epilepsy Awareness Month.

First of all- shout out to JDRF and Diabetes Canada for being awesome organizations that do amazing and important advocacy work, educate, fund-raise, and provide me and my fellow T1Ds opportunities to connect  (T-ONE-D program) while learning super helpful info for managing this disease.

T1D Q & A:

Also shout out to my friend Lily who came up with some questions she thought people might have about diabetes, so I could do this style of blog post!

       1. What is the difference between the two types?

I’m going to link to Diabetes Canada’s page on this, so click here for more info! However, I’ll do my best to answer this as well.

There are actually several types of diabetes, but the most common are Type 1 Diabetes and Type 2. Basically, type 1 occurs when your immune cells mistakenly identify the cells that produce insulin as “bad” cells and thus, destroy them, leaving type 1 diabetics completely unable to produce insulin. The trigger that causes this auto-immune reaction is still unidentified, and therefore, there is no cure! Type 1 diabetics are completely dependent on insulin injections to keep themselves healthy and well.

Type 2 Diabetes, I do not know as much about, as I do not live with it, however it differs from Type 1 in that the body still produces insulin, but it is sluggish to metabolize it or does not use it as effectively as it should. Type 2 Diabetics closely watch their diet, take oral medication, and sometimes, insulin, to manage their disease.  There a lot of factors regarding the cause of type two, such as genetics, lifestyle factors and more! Neither disease simply results from eating too much sugar, as many are led to believe.

Please follow the link I provided if you want more info!

     2. How do you treat type one?

Mainly, insulin therapy. But there is a lot to it, and many options when it comes to insulin regimes. I personally use an insulin pump (and no, it doesn’t “do all the work for me”), others use pens to inject their insulin, or the classic syringe. But insulin therapy consists of a lot more than just injections.

Treating type one consists of counting and calculating the number of carbs in everything you eat, giving insulin accordingly for everything, calculating dosages for your “background insulin” or the little spurts of insulin (or long acting doses in larger quantities) you take to mimic your pancreas, taking your blood sugar (at least 5 times a day), recording it, and evaluating patterns and trends and adjusting insulin dosages accordingly, accounting for activity level, sickness, stress, emotions, hormones, and so much more! It consists of treating low blood sugars, high blood sugars (both of which are awful and annoying and ultimately frustrating), visiting an endocrinologist about every three months, and basically, factoring your diabetes and blood sugar level into everything you do!

      3. How do you handle a chronic illness on top of being in uni?

Ah man. Honestly, half the time I don’t know myself. Somehow I make it work. When it really comes down to it, it is all about prioritization. Using the days where I am feeling well to be productive, resting when I need to, putting my health above everything else, being honest with my professors and classmates about my conditions and utilizing any accommodations available are all things I do to make sure I can keep up to school. Usually, when things get chaotic, it’s often a game of figuring out which classes I can afford to miss to both get my upcoming assignments done while still maintaining enough energy to attend those that I need to. It’s a balancing act, and a tough one at that. There’s always a point where it gets to be too much, and usually, after a bit of a breakdown, (haha), I re-evaluate this balancing act and figure out which activities I can afford to cut, or need to, to maintain both my physical and mental health!

      4. Does it affect your relationships in ways you didn’t think it would?

Not really, I guess? Like, maybe the start of relationships and stuff – I’m always worried about how people might react to finding out that I have diabetes, and what sort of questions or misconceptions they will throw at me. But everyone in my life has been extremely supportive and understanding, and for the most part, it hasn’t been as issue.

I do feel, sometimes though, feel like a burden, or feel guilty, for say, cancelling plans, or being extra exhausted because of my illnesses, or for complaining too much when I’m burnt-out…and this sometimes does affect my relationships negatively, because I feel like there’s just a bit of a divide between me and my “healthy” friends and family, based on the differences of our lived experiences and what it is actually like to be chronically ill. So yeah, I mean, sometimes it means I miss out on things, or disappoint people, or myself, but overall, everyone has been great, and I really am so unbelievably fortunate to be surrounded by such awesome people.

       5. What do you wish the world understood about type one diabetes and the people who live with it? 

Oh man! There is so much I could say to this. But to sum it up rather quickly, I wish that people understood that diabetes is a) not caused by eating too much sugar, b) a really complex disease to manage and deal with, both psychologically and physically, and because of this, is extremely tiresome, c) (in the case of type 1) has no cure, and d) affects every aspect of our lives in someway! it is overwhelming at the best of times.

 

If you made it through this all, thank you.

go hug a diabetic and spread some awareness for this deeply misunderstood disease!!

peace out

xoxo jc.

 

when a sick day is not just a sick day

 

With reading week now over and deadlines piling up, my hours at both of my jobs picking up and the end of the fall semester looming, things are getting a bit chaotic. And some times my body just can’t handle it. When the stress becomes too much, my body is sure to remind me of the fact that I am chronically ill. Cue chronic migraines, wildly fluctuating blood sugars and seizure auras.

I try so very hard to push through it as best I can, but often, the inevitable happens – I physically cannot get out of bed.

Sick days, are a funny thing, when your body is permanently sick.

You would think, that after years of being chronically ill, one would come to accept the idea that yeah, sometimes, they have to be realistic about their limitations – they have to take a break more often than most, they have to sacrifice many things to achieve the balancing act required when living with chronic illnesses. You would think. But this is not an easy realization to come to terms with, nevermind implement into your life.

And somehow,  despite knowing this all at our core, we still feel guilty. I use the term “we”, because I know this is a common phenomenon among people with disabilities and chronic illnesses, but I do not mean to speak for anyone but myself.

Calling in sick is an extremely hard thing for me to do. It feels a lot like defeat. I can’t help but feel guilty, and as though I’m to blame. The thought spiral then starts, like so: What did I do to trigger a migraine today? Maybe I’ve been pushing myself too hard. Can I even handle what I have on my plate right now? These quickly to turn to questions of my self-worth, questions about my future, my ability, my aspirations – ultimately, am I enough? What if my illness takes priority and I have to give up my goals for the sake of my health?

This inescapable thought process is the reality of a sick day – of my mind, when I have to call in sick. I don’t just question whether I’m making a mistake about calling in, whether I can push through it, whether my employers and coworkers will think less of me (I know the answers to all of these, but I still doubt everything), I question whether this one sick day will eventually become my life. That is the fear, the uncertainty, that is chronic illness. You never know which day will be your best and which might be the start of your worst.

I know this post is not bright and happy, but it’s honest. Sick days are not just a day in bed for me. They are a day trapped in the anxieties, the uncertainties, the grief, and the guilt, of being chronically ill.

But I am so, so thankful, that more and more, I am having fewer sick days. My health over the past few years has improved as I’ve learned more about my conditions, more about how to manage my health, both mentally and physically, and as I’ve learned to accept and adapt to life with chronic illnesses. I am so fortunate to have the people around me that I do, the people who understand and care so deeply about me, and I am so fortunate that my “good” days outnumber my bad ones by a long shot. And after many of the flare-ups I’ve had, especially upon starting university, I know not to take this for granted.

love and spoons,

JC.