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 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.

 

 

 

10 Things I’ve Learned as a Chronically Ill Student

University is hard. So is being chronically ill. (sidenote: prepare yourself for way too many cliches. i’ll be honest, my creativity is lacking today)

  1. People (including professors!) really do care. If you give them the information they need to help you succeed, and much ahead of time, they are almost always super accommodating.
  2. Speaking of accommodations – there is no shame in registering with accessibility services. They are there to make your life easier, and they will.
  3. Self care, especially in the middle of a chaotic semester or an illness flare-up, is about the basics. Food. Water. Rest. Repeat. Put your oxygen mask on first, folks, and you’ll be grateful for it.
  4. Slow down. If you have to drop a course or back out on a commitment, I promise, it is not the be-all-end-all. You have time. Give yourself breathing room in your every day routine. Slow and steady wins the race. Do whatever you need to do for you. It’ll be okay. You will get where you are going and there is no harm in taking the time to do so.
  5. You’re doing better than you think you are. We are often our own worst critics. I don’t know if this is true for all of you, but it definitely is for me. I’m learning to congratulate myself for sticking it out. Some days, for simply existing. One step at a time.
  6. Also – it’s okay to quit. It’s super helpful to know your limits. It is also super helpful to abide by them. I know there is so much pressure to be able to handle everything in your life and even to thrive on stress and chaos, but pushing yourself past your limits is not worth it. Know there is no shame in taking a break and putting your health first. Easier said than done, I know.
  7. Not everyone will understand. So maybe this is a completele contradiction to #1, but it’s true. There are few people who truly understand, or even are able to empathize with how you feel at your worst. Or even at your best, which I know, still probably isn’t great. Keep the people who “get it” close. If it is easier, get involved in the online spoonie community. It is full of wonderful, uplifting people.
  8. Plan ahead. But be reasonable. I know so many give the advice to get all you can done on your good days, so you are still ahead of the game or even just barely on top of all your assignments when your health takes a hit, but, be mindful. Yes, use your good days to your advantage. But don’t overdo it. You deserve and need time to relax, even when you feel good and just want to be productive while you can. Prioritize and stay organized, so you have one less thing to stress over.
  9. Ask for help. I’m still learning how to do this. I feel like I have to handle everything on my own, all the time, or I’m somehow failing as a human being. This is far from the truth. Utilize the resources available to you and lean on your friends and family when you need to.
  10. Allow yourself to be present. It can be so easy to get caught up in assignments and anxiety, about your health, about assignments, about anything and everything, but take a moment to just breathe, and acknowledge the present. Focus on what is good about where you are in that exact moment in time. Learn to notice the simple pleasures in life and celebrate the smallest of successes. Not every day is a good day, but all days have something good in them. Even if it’s just “hey, the sky is super pretty today!”

Ultimately, reflect on what is best for you and abide by it. You’ve got this.

Love and spoons,

JC.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

welcome

Hello & Welcome ;

After many failed ideas and attempts at starting a blog, I recently have been re-inspired (with a touch of anger-fueled motivation) to put myself out into the blog-o-sphere. I’m centering my blog around my life as a university student, a feminist, a chronically ill individual, a lesbian, and ultimately, a writer.

Previously, I had thought I had to have a very narrow focus on my blog to write it. Maybe, this is the case, if I were creating this blog as a business endeavor. I am not. I am here to share my life and its complexities; my failures, my successes, my insights and to connect with others sharing similar experiences. I decided a strict theme blog isn’t for me. I want to share what I am passionate about, and I want to write about my life, with an emphasis on intersectionality and my personal experience as a person with many faces to their identity.

If you care to follow along, expect posts related to everything previously mentioned (feminism, academics, writing, disability, LGBTQIA+ issues etc) and what makes my life uniquely my own.

New posts once a week, every Monday!

To learn more about me, please visit my about page.

Best,

JC