Things I wish I had the Courage to say to some able bodied people.
When an able bodied person is confronted with a non able bodied person, it is a confrontation of their understanding of healthy; especially if that person is invisibly disabled. It is a brutal confrontation of what healthy looks like, feels like, how it could crush you, erode you from the inside. It’s painful. It’s crushing.
During the time when I was trying to accept achalasia as something that will be a part of me for the rest of my life in some form or the other, I had no empathy for this confrontation of healthy that I unintentionally caused in able bodied people. I had no room for care. It was either a monumental amount of people pleasing, through diminishing my feelings and needs. Or… I had nothing else. I wish I did. I wish I had the courage to say the things I stuffed so deep and locked away. I wish I had the kindness for myself to say a lot of things.
And no, I do not have empathy even now. When able bodied people tell me to adjust to them with no scope of them meeting me in the middle ground, it is a slap to the face. It is them telling me that my very being is an inconvenience to them. It is extremely hard for them to face their mortality, their privilege, their emotional, mental issues, thus I must hide mine, manage mine in a way that will suit them.
When able bodied people tell me, “I know my privilege, give me time to learn”, I am forgiving of almost all of their micro aggressions.
This is for the former type of able bodied people. And, for my heart.
"Please stop giving me advice. I have tried whatever it is you are about to say. Trust me, whatever you have to say, I have already tried in my desperation, in my pain, fear, anger and grief. There is absolutely nothing you can offer me apart from a listening ear.”
“YOU THINK YOU CAN DO THIS BETTER! You think you can do this better. Alright then, take my body, let me put my relationships, my reputation, my qualifications, my work ethic on the table. I will put everything on the table. Here, take my body, do it better.”
“You know the only time you are allowed to give me advice is when you sat in your filth after a week’s worth of flare up, unable to get anything past your esophagus, tired, angry, grieving, in pain (pain like you will never understand, and I hope to god you never do), wanting to jump off a cliff but hating yourself for even thinking that because you want things from life, you want to achieve things, you want love, joy, and… wondrous beautiful things, but you see your body’s limitations, you violently confront your body’s limitations, and you just… shatter. But you pick yourself up, clean the sheets of your vomit, clean the floor of your vomit, order food that is sugary and unhealthy instead of the mexican taco that is rich in vegetables and spicy and tangy and all those flavours you love but its the thing that you are sitting in right now so might as well try the easier thing, try to eat that, desperate, now you are hungry, you know your LES is too tight, it won’t open, it won’t go into your stomach, but you are hungry, desperate, starved, you eat, and have that violent anti peristaltic movement, forcing you to throw it out of your system into a bag next to you because you lost energy to go to the bathroom for every single bite. You are almost done, the food almost gone, on the second last bite, you feel it, your LES giving in, letting you eat, letting the food into your stomach. You take a gulp of water to feel that, you feel it and you hate the world because you have felt humiliation, pain, anger, grief like you never thought you would.
You don’t get to judge my lifestyle, my life, my choices till you have been there. And no, you don’t have a thing to say to me even if you had a close family member who has had the same illness or combination of illnesses, or something similar.
You do not get to lord over your knowledge that you do not have or your lived experience as a care taker over me when you have not lived a single minute in my body.”
“Please stop telling me that you feel bad when I waste food. It’s unintentional, I do not want to waste food. I am hungry, I want to eat it. I would kneel down, rub my nose in front of a god I hate just to be able to eat that entire plate of food. But I cannot beg any god. So I am begging you, stop, please.”
“Please do not say, “I bet she cannot eat it,” when I am trying my hardest. It is not a choice. I had no choice in this. Stop treating this like a choice. Stop minimising my pain, my grief with such insensitive bets.”
“I am post surgery, does not mean my symptoms have vanished. I am post surgery, that does not mean that there is no possibility of me going back to the very worst of what I went through. It’s lower but I will always be afraid, always be incredibly, debilitatingly scared. Stop talking like I have nothing to be scared of, stop dismissing me just because you are incapable of understanding the nuance of what chronically ill means and entails.”
“I know I am strong, you have told me that multiple times. You have also told me that I can do it again because I did it once. But that’s not true. I know I cannot do it again because I have done it once.”
“No, we are not the same. None of the things I do have remotely the same meaning as they do to you. I am desperate, I am desperate to not feel the pain, not feel the kind of, non consensual, crippling pain that you will not be able to survive. No, we are not the same. Almost none, maybe even absolutely none of our experiences are the same.”
“It is not about me liking the food or not, it is about me being able to eat it or not, me being able to feel the food go past my LES, into my stomach, feel the process with the most minimal amount of pain. It is about me being able to eat it, or me being able to not eat it.”
“Somewhere along the way, it’s not about healthy or unhealthy, it’s about sustenance. And, sometimes, the most unhealthy diet is the healthiest.”
“You think this is a choice, me trying extremely hard to swallow but not being able to. Alright then, let me stand on your chest, you do it better than I am right now. But wait, it’s not only about eating is it, it’s also the forest fire like pain that is constant. I gave presentations through it. How do we replicate that in you. Oh I know, let me keep punching you in the chest for 10 hours straight. Let’s do that, and then you do it better.”
“I am tired of your privilege, either check it, or get out.”
