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.

 

 

 

 

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.