Learning to Live with and Love my Disabled Body
By Sarah Calise
Art by Autumn Rain
Let's talk about shopping carts. Since moving to Tennessee, I have given up my devotion to Publix grocery stores and their calming green aesthetic. Now I go to Kroger, which has quality goods but at a cheaper price. More importantly, they have my favorite style of shopping carts. Two-tiered basket beauties that are half the length of an average cart. You might be thinking that’s a weird thing to fixate on, yes? Not really when you’re disabled like me. I love those carts because they are perfect for my single life shopping list, and they allow my body to perform less torquing and stretching to reach items in the basket, which is essential for avoiding (more) pain or a potentially debilitating flare up. Since becoming disabled ten years ago, I possess an ever-growing list of favorite inanimate objects that make my life a little easier and my disability more manageable.
What abled people do not understand is that many disabled people are constantly calculating how they are going to navigate the largely inaccessible world, from shopping carts to doorways to bathrooms. Like objects, I also have a list of favorite restaurants, movie theaters, department stores, museums, and more based on how accessible they are for my particular disability. If I am visiting a new establishment, then I try my best to research beforehand. My disability involves my lower back, so I am always analyzing the type of seats, the comfort of seats, and the number of seats in any given place because it can literally make me or break me. If I cannot determine the level of accessibility, I come fully prepared with my back brace (affectionately named Bandido after the Mexican luchador) and one of my orthopedic coccyx cushions.
As you can imagine, existing in the daily logistical maze that is our inaccessible society can be quite exhausting. And yet, the physical hurdles are only part of it. My disability also comes with a steaming pile of mental health problems. More accurately, I should say disability exacerbated the depression demons that have lived inside me since I was a teenager. I used to inflict pain upon myself for attention, a cry for help. Now the joke's on me. I have to live with involuntary, crippling chronic back pain every single day until I die.
I can't really put into words what it's like to be told at nineteen that you will never physically have children, you will never play any of the sports you spent your entire childhood perfecting, you will never ride your favorite roller coaster, you will never travel abroad, you will never do this or that. You will never. You will never. You will never.
I remember my neurologist attempted to make me laugh with this solid advice, "And whatever you do, don't get into a car accident." Every time I enter a car, I think about that. See, it was funny to him because obviously no one wishes to be in a car accident. And it's funny to me because that's exactly what I do. Not any old car accident, though. I wish for one in which I have no chance of surviving. But Death, I have learned, is not in the business of granting wishes.
My mental health is at its absolute worst during flare ups probably because that is when I am most isolated, especially since I have been living alone for two years. I am generally confined to my bed, which means I cannot work. Capitalism is extremely good at making me feel terrible for abandoning my colleagues and being unproductive. During flare ups, my bed becomes my own little raft of devices meant to help me survive the ocean of pain and loneliness. Many of these things are for my physical health: a memory foam mattress topper, memory foam pillow, knee pillow, leg elevation pillow, heating pad, leg stretch band, autoseal water bottle, and snacks that are easy to eat while laying down, like goldfish. The other items help me mentally: my phone to stream shows or read fan-fiction, my phone charger to ensure several hours of entertainment, my phone holder that wraps around my neck so I don’t get “cell phone elbow” from holding it up all day, my plush Snoopy doll to hug and cry into, and a couple of cozy blankets if its cold. So far, the longest I have ever had to live in the raft was seven days. I missed my chance to see the Anastasia musical I waited a year for AND I was unable to get refunded for the $90 I spent on the ticket. It wasn’t the first thing I missed, and it won’t be the last.
When I am in the raft, I am very bad at asking for help, which is ironic because the very nature of being in a raft kinda means you need saving in one way or another. Even after ten years, I still feel a lot of guilt and shame and internalized ableism. I don’t want to be a burden, which is often how I feel. It’s a big reason I don’t even attempt to date. Who wants to put up with this? The daily pain girl who hasn’t shaved her legs in a year because it hurts too much. I don’t even want to put up with me. Luckily, now I have a few friends who know about my stubbornness and are willing to help if I need it. The dirty dishes piled up in the sink before my last flare up, and I couldn’t clean them. A friend came over and scrubbed the grime away. I cried because I was so thankful and because I felt so undeserving of such kindness.
These feelings of unworthiness is what I am trying to tackle more fiercely after a decade of disability. Your 20s are a time filled with exploring yourself and who you want to be, and having the added challenge of adapting to disabled life was unexpected. I struggle, but I'm still here and I choose to be here with purpose. Disability makes you keenly aware of how important it is to live for each day. And, while not every day is good, I do think there is something good in every day. I pledge to celebrate those good things more.
Despite the grim picture I have painted, disability has given me pockets of positivity—notably the mentorship and friendship of other disabled people. The disability community is the most radical, loving, and fearless group of people I have ever encountered, and I am grateful to them for showing me my value and empowering me to live just as I am. Because I am enough. Here's to the next ten years of living and believing I am worth it.
“The hardest thing in this world is to live in it. Be brave. Live.” -Buffy Summers