I have always found it very easy to resent the healthy people in my life. Honestly, learning to feel any other way about it has taken a lot of work and healing, particularly within the lens of a global pandemic. It’s also a topic with many different and complex nuances, which is why it felt important to collaborate with my dear friend, Lexi. By having these conversations from more than one perspective, it’s easier to see where the wider issues are — and what work needs to be done when moving past them. So, here we go, sharing stories and being vulnerable.
When I was about ten, we were given an assessed group project. Whilst I don’t remember what we were researching, I do remember working on it at a friend’s house. At some point during the day, I had to call my mum about something, so everyone else went outside on the trampoline. I could hear them laughing. Having a good time. As children should — but without me. It was a type of joy that I could never access. For some reason, I found the enormity of these emotions to be overwhelming, so asked if my mum would collect me. When my friends came back inside and I explained the situation, one of them said: “what are you going to do, just never leave the house and cry every time you see anyone walking around town?”. Now, we were ten. It was impossible for her to even begin understanding what my brain was going through, let alone think of a more sensitive way to discuss it with me. I still don’t have the answers myself. Most of the adults in my life have struggled, too. There is no simple solution. Later, a conversation between our respective mothers looked something like this: “it’s difficult, isn’t it?”. I have never forgotten my mum’s response. “It is. I think it’s only going to get worse as she gets older, unfortunately”. Spoiler alert, friends: it did, in fact, get worse. Much worse. But then it eventually got better, which is what I want to focus on.
At this point, I will humbly step aside from talking about myself (gasp!) and give Lexi the space to unpack her feelings, too. Buckle up. Side note: you’re welcome to read these words in her New York accent because it automatically makes everything she says infinitely cooler than me:
It is often difficult to put limitations on myself to prevent burnout. On one hand, I’d love to be able to do things the way healthy people my age can. On the other hand, there is the painful truth that I simply cannot fit into that mold. For the longest time, I’d try to water myself down. To make myself manageable to others, as a disabled person. I’ve come to realize that whether it be jobs, friendships, day to day tasks — that I don’t fit the typical mold, and I am okay with that. Different doesn’t mean bad. Disabled doesn’t mean bad. It’s what makes me unique, and bold. These experiences — as much as I’d rather have not had to go through them — as a disabled individual, only prove my strength and resilience. Even when I cannot see that.
When I became friends with Danielle, during 2020, it was during a time that I felt incredibly hopeless. It’s a global pandemic, of a lung infection with no vaccine, and I was an individual with severe uncontrolled asthma. Most people have the knowledge that somehow, asthma is, ‘puff puff inhaler, and you’ll be fine,’ kind of nuance. That has never been my experience. With the persistency of my lungs not cooperating, I was in the hospital for a week or so at a time nearly every month at one point. I didn’t write all of this to be a sad story. The point is this: when I met Danielle through a Facebook group, she brought hope, love, and a different perspective for me to consider. I am thankful every day to have become such lovely friends. You can follow Lexi on Instagram here.
In conclusion: it’s really difficult to feel like a valued member of society, even by our own peers and loved ones, when the struggles of these disabled experiences are belittled for their own convenience. It has taken me a whole decade to feel okay. Don’t take that away from me just because you’re getting bored. Thanks in advance.
Lexi, thank-you for bringing your wisdom to this page with me. I will listen to that voice message of you saying “howdy, y’all” whenever I need a serotonin boost. xxx