Talking about “it”
Seeing yourself in someone else can make more of a difference than we -collectively as a society- will ever acknowledge.
When one of my friends had mentioned that I should seek out another platform for my account of the events (for context read ‘Safe Space’), I was adamant in my decision to not budge on this. I didn’t want to cater to people in my space. If they were bothered by my voice then they could walk out. I was not holding a gun to their head. They had as much freedom as I did, in this instance.
But, later, much later, I noticed that I had subconsciously catered to this request, or demand, I am still making up my own mind about this. I had taken my more aggressively vulnerable experiences onto another platform. My constant check in statuses that were more interactive, I took them to another platform.
It was a normal day, I don’t remember that day as something different or terribly painful, it was just another day. I did a public check-in for my non-able bodied folks. Told them how taking space, taking time to care for themselves didn’t mean that they were less than. That the world wasn’t made for them, it is a crushing realisation, but we deserve to live, to breathe, to occupy space.
A day later, I got a DM from someone. They were much older than I was. The DM read (I am para-phrasing over here):
“Hey, I know you don’t know me but I wanted to thank you. Seeing your status yesterday made me seek help. I was in a terrible place mentally because of my disability/chronic illness, I almost gave up. But reading your status, it helped me to find the necessary help.”
That… it was everything for me. I teared up.
I don’t think people understand what not seeing examples of other people, successful people, with disabilities in popular media can do to someone who was born with/later diagnosed with an ailment that would categorise them as non-able bodied. With something that would be severely physically and/or mentally debilitating. What not seeing history, our history could do to us in the very depths of our soul.
I was desperate to find people with achalasia. Someone who I could look up to. It was hard to find them, I gave up. I found spoonies of all kinds instead. Their experiences were relatable. They held me, anchored me. I was still searching.
That is when I came across Achalasia Mama on instagram. That entire account… it was me and I was them. Hashtags, posts, I saw them. Very few and yet it made all the difference. I wasn’t abnormal. There were more people like me.
In the white washing of the world, talking about not relatable, not palatable, not visible pain is looked down upon. Our pain is a form of confrontation, probably the most mundanely disdainful kind. It’s painful, this realisation, this erasure.
I recently heard Achalasia Cardia being mentioned in Chicago MD. It was fleeting, a glimpse, but it was there. A split second. That’s all it took to heal a little.
Talking about pain, the realistic kind not the glamorised one, is necessary. We are not alone, in the existential way. But when we do not see people like us, people who are suffering but striving, are accepted and inspirational, living, in the most mundane way, we become so much more alone than we actually are. We suffer in isolation that is cause by silence. Pain that is exacerbated by this isolation that is caused by a prison of forced silence.
