Artwork by Elizabeth D’Angelo, who has severe ME. View, purchase and commission her artwork here.
People can be infuriating. People can tell you that you are wrong about your own experience. That if only you were braver, bolder, cleverer, or otherwise different you’d be more. Whether the more they have in mind is more well, more sane or more able.
They are not willing to see the value of people who aren’t like them. You’re sick, so you can’t work, and they don’t know how to value your kindness or how to understand your strength. Or maybe your brain isn’t gentle with you, and they don’t see that you grow flowers despite that, or write songs, or create art so stunning that the people who see it feel like you have cut the sky open and mined the diamonds from the stars to make it real. Or maybe even breathing hurts you, moving more so, and they have no ability to measure your breaths like they are as heavy and valuable as gold, and see your turning over in your bed as a triumph of existing, still existing, against the odds that you are facing. Or perhaps you’re poor and hungry and they think you should be able to make bread out of thin air, and then, even if you master such a conjuring, they will expect you to make better bread with spoiled ingredients, while you pull yourself up by the bootstraps of the boots you don’t even own.
It hurts. I know it hurts. When people try to make you feel as though if you tried harder, the locked door would open and you’d go straight through it. As though it is your fault, that you are trapped on one side of it, and you haven’t done more than they will ever know, with crowbars, and hammering, and hurling yourself against it, and using every kind of locksmith you could find. It hurts to be misunderstood, and to have the pain that only you have experienced diminished and dismissed. To have your attempts at the overcoming of your troubles turned, somehow, through the sleight of hand of someone else, into a failure. As though success is a synonym for perfection and not to be found in the messy and beautiful courage of surviving in a deeply imperfect world.
But that is not your failure, it is theirs. It is a failure of their grace, and their humanity and oh, perhaps most toweringly of all, it is a supreme failure of their imagination.
I saw someone doing that to someone else today. I saw them utterly dismiss another human being, wipe away the immense suffering they didn’t want to see, and then issue condemnation before they offered instructions on how an adversity they had never encountered ought to be faced.
And we’ve all had those moments. When a stranger, or a friend or someone we love dearly has demonstrated they do not understand our experience. Moments that either hit us full in the face and leave their fingerprints, or subtly sneak into our souls. Moments that contain such sudden, unexpected loneliness and sorrow, that they make us feel all the breaks in ourselves with absolute clarity, and even sometimes bring us shame, as we realise “This person who matters doesn’t get it after all”, and worse still “if someone truly believes this, what if they are right?”.
I’m not sure there are ideal reactions to such moments but I have two that comfort me. The first response is compassion blended a little bit with pity. Not too much of either, but some, because they can’t know what they don’t know, and because perhaps everyone is stupid about the pain they don’t have, sometimes. More than that though, I believe that one of the worst afflictions for another human being to be carrying is a lack of empathy. They earn a smidgen of my pity for the lifetime of that lack that they will face. That kind of break in a person really doesn’t get to heal.
The second response is to quietly and sincerely in the deep red recesses of my still beating heart, hold myself steady and to think quite firmly in their direction, with or without a few swear words to begin with, the word “NO”. And then, “I do not accept what you have just said.”
Don’t you ever accept what they just said.
Because they are wrong.
Because you don’t have time to be weighed down by their damage and their nonsense.
Or with the anger you will feel as you try to justify yourself to them.
It is ok to expect better.
It is ok to know you do not deserve to be treated that way.
It is ok to remember that your best effort is enough and to defy anyone to take a better shot at walking in your shoes.
You don’t need anyone who makes you feel small telling you who you are, and, to be clear, they wouldn’t know who you are if you put it on a billboard. Or you wrote it in lights.
Also, and as a final safeguard against thoughtlessness, some of us will always be available to pelt them with the fruit of your choice if you need that. Just in case.
I may not have much of an overarm swing, but my aim is true and I will offer no mercy with my soaring punnets-ful of justice.
I can think of a few inventive things I could do with a pineapple in a sudden emergency, as well, actually….
Read more by Sarah-Louise on her website, inkinstrangeplaces.