Standing in the Middle

Standing in the Middle of Disability and Identity

(This is more a stream of consciousness than an actual blog post about anything. Hopefully it will help me get into writing a little more!)

I’ve been thinking about writing lately. I’m no writer by any means, just a girl trying to put emotions and half formed thoughts to keyboard. Instablogging (blogging on the Instagram platform) has been immensely satisfying since it offers a quick way to offer a flurry of words to my screen and therefore the word wide web, and a chance to meet other people who share my interests or who may be in similar circumstances depending on what I decide to post alongside a photo of my choice. The communities I’ve chosen to take part in have been nothing short of wonderful, accepting me without question and making contributing feel useful and wanted. The beauty of this style of blogging is that I get to choose what I present, and I can leave out all the undesirable bits and pieces going on in my life as I rave about a favourite product or show how I’ve expressed myself through a new creation. Nobody needs to know I’ve typed my write ups and responses while laying scruffed up in bed, belly painfully distended from the strong antibiotics I’m on for yet another infection, sick bag placed within easy reach and skin itching to the point of being almost unbearable since it’s dried out and flaked so much since the last time I managed a shower because my blood pressure has been too low to safety have one recently (hopefully tonight is the night, hah!).

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Some part of me wants to reach out and present the things I usually don’t want to bring to light but I find I’m often heavily conflicted about my identity as a disabled woman so here I am trying to grab those half formed thoughts and put them into words.

Perhaps I’m afraid of pity, of people thinking I’m sicker than I actually am. Or of people thinking I pop a few pills and hop along with my day as any other. But really, perhaps it’s because I know people carry their misconceptions, not that I really mind because it’s been me that’s been in control of how I’ve presented myself so I’m the only one the blame. Still, I fully admit to cringing when I get a comment with someone saying that they’d never have the energy (or “spoons” as they’re known in the chronic illness community) to do makeup or self care as often as I appear to when I’m lucky to do a full face of makeup a few times a month. I know it’s not meant as an insult at all but I can never properly put into words the energy sacrifices I make in order to be able to be lucky enough to be able to indulge in some of the things I do so I tend to take it to heart more than I should. I can get a little childish in my way of thinking and want to say things like hey, guys, I’m childless. I’m petless. I have a full time carer. I have palliative care. I do not cook. I do not clean. I do not shower myself. I don’t brush my own hair. I don’t really do much of anything at all. These are not things I want to advertise when excitedly showing off a new photo of a makeup look I’ve achieved because I don’t want people to think I’ve achieved it in spite of anything. In spite of disability. In spite of illness. I just want people to know I’ve achieved it as any other person would have. I want to know if people like it, and if they think I did I good job. Was what I posted useful to them? Just… I don’t really want to call them “normal” things but I struggle to find another way to describe it. But why do I then balk at the comments of people who state their wishes for something they have perceived I seem to have in abundance such as energy in response to my achievement? I definitely don’t want to preface everything with “I felt really sick and tired today, I threw up 4 times this morning but I still managed this, etc etc” but I also somehow want the cost it took to achieve what I did to be acknowledged by those commenting on how lucky I must be to have such energy. But how? But… why? It’s so petty of me in the grand scheme of things.

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These are questions I can’t yet answer myself. I accept that I have a disability and I accept the impact it has not only on me, but those around me. I accept that I do not want to put it all out there on display, not because I’m ashamed but because it’s not something I want to be connected to everything I do. I’m not my disability and my disability is not me. I hope some day soon I can simply accept comments from people who have absolutely no idea what a day in my life contains simply because I’ve chosen not to express what it contains. Maybe someday I will speak more candidly about it all as I once did and that it won’t feel so personal to me when people judge me from a view different than my own if I do.

As for now, I’ll continue to do what makes me happy and what passes the time when I’m able to do it. I’ll not gloss things over but I’ll just speak about what I want to talk about in that moment. I used to feel guilty, as if I were hiding or lying about truths. But not speaking of them is not lying. I don’t owe anyone a full insight into my life as it is. I have the power to display myself to the world in whatever way I choose, and I choose that power to display myself as a young(ish) female with an interest in expressing herself via beauty who sometimes struggles with a somewhat significant disability. I should not feel guilty for that. I should be proud of what I’ve achieved. And, for the most part, I am. But as with anything, I still have a lot of work to do on myself! Starting with putting a stop to feeling like I need to try to please everyone or feeling the need to explain myself to everyone I fall across. After all, there is no proper way to be disabled. You just are.