Random Benefits of Being Chronically Ill
There’s no way for me to sugar coat it. I’m in pain most of the day. One day my legs want to hike halfway across the city and the next day they don’t even want to take me to the bathroom. One day I can eat three times without getting sick and then I end up paying for it at 2 AM.
There are lots of people that feel worse than I do. Some have feeding tubes and are confined to wheelchairs. Even if people look perfectly healthy in your eyes, they could be in excruciating pain. I don’t really like to complain too much, so I wanted to make a list of a few positive things I came up with while I try to get a full grip on my chronic illness.
When I’m so tired I don’t even feel like getting out of bed, boredom can settle in easily. The best way to tell I really feel like shit is to notice that I’m not sitting in my beautiful gaming chair, hammering away at a PS4 game. I have to be in a crazy amount of pain or seriously tired to not want to sit in an insanely comfy chair I put together with my own hands.
I originally bought the switch for my upcoming road trip to Michigan. I live in Alabama, so Michigan is a whopping 1,000 miles away from me. The farthest I’ve ever been from my small town is Atlanta, which is about 2.5 hours away. Michigan is about 12 hours away from me if you’re driving.
You know how you lie to yourself about not making a purchase deep down you really want to make? You say something like “Oh, I won’t buy that tub of delicious ice cream.” and then the next thing you know the tub is sitting in the passenger seat while you steal spoonfuls on the way home. As soon as I stepped foot in GameStop, I knew I wasn’t walking out of there without a Switch.
When I’m bedridden, my Switch becomes my best friend. I only have two games so far, but Super Smash Bros is my favorite game. Kirby and I have been rescuing everyone one fight at a time.
A lot of people thought this was a foolish purchase on my part since I’m leaving home for a month in two weeks. However, I’ve stayed in hospitals for months at a time. I spend a whole day in a clinic running through multiple tests at least once a month. It got to the point where we packed overnight bags and brought them to doctor’s appointments because we never knew when they’d want to admit me. I’ve always had something to help me pass the time, whether it was an Ipod Touch, A Nintendo DS, or my laptop.
So, the Nintendo Switch is more than just another gaming console to me. It’s a way for me to keep doing something I love even when I don’t feel good enough to hop in my gaming chair. I can game in the bed and it takes my mind off the pain for a little while.
My puppy Ginger never leaves my side. If I’m having a bad day, whether it’s physical health or mental, she’s always right next to me. When I would get really bad on campus, I would lay on the floor with her and we’d share her huge dog bed. She always gives me a reason to keep fighting.
Ginger will throw a tantrum if I’m out of her site for too long, unless she’s comfortably in her crate. If I leave her on the bed when I walk out of the room, I can always hear her paws hit the floor after she jumps down. When I go outside to water my garden, she howls and barks and whines until she can see my face again. Sometimes she’ll even keep whining until I give her a hug.
When my day is really bad, like can’t-get-out-of-bed bad, she lays right there with me. Her body lays right against my leg. Every now and again those soft, blue eyes will peer up at me as if she’s checking on me. Her tail softly wags against me. I give her belly rubs and she stretches out and her little hind leg starts kicking furiously. That’s how I know I’ve found the right spot. Making her happy makes me happy.
When I first decided to sit this semester out, I felt like a failure. I felt like I let everyone down, even though I knew I was making the right decision for my health. I felt like I had “college drop out” stamped on my forehead. I was ashamed, and it ate at me.
Now that I know that I’m not just lazy, I feel so much better now. When people put the idea in your head so many times, eventually you start to believe it. I started to believe I was lazy even though I could feel my body stop like a car that just had its car battery die.
Knowing the reason I feel as awful as I do is a gift and a curse. It’s a gift because I have the answer I’ve been looking for since last December. It’s a curse because I know in the capitalist society we’re in, people’s value is often determined by their productivity and accomplishments.
Some days the only accomplishment I can give you is that I chose to keep living. I kept breathing. I ate something, even if it was just a protein bar. I drank something. I lived. Other days I can write three articles, work on freelance marketing stuff, and still have enough energy to tend the garden and play video games. However, they are few and far between.
I don’t value myself based off my productivity anymore. I value my days on how much effort I put it. Did I listen to my body? Did I take my medicine? Did I eat at least once? Did I take Ginger outside for a walk, even if it was just a short one? I value my days off of those things more now. I’m learning how to put myself first, and I’m already seeing some good progress.
I used to feel terrible if I didn’t respond to them in a reasonable amount of time. Others wouldn’t respond to me for days or even weeks, and I’d brush it off. “Oh, they were busy. It’s all good.” However, if I didn’t text someone back, I’d feel like an asshole.
Now that I’ve accepted that my energy is limited, I don’t feel like I have to be as available as I used to be. I used to be the person that you could come to late at night when you ran into a problem, and I would literally hop out of bed to help. I’d stay up all night trying to make sure the other person was okay. I’d agonize over problems that weren’t even mine. I’d have panic attacks over deadlines that never belonged to me.
Now that sometimes I can barely find the strength to carry myself to the bathroom, other people’s bullshit has become less important to me. I mean I don’t turn my back on people I care about, but I’m not about to make myself feel worse unless it’s an emergency.
I used to not take naps if I thought that special someone was going to text me back, and I’d end up feeling like crap the rest of the day. I also used to stay up late in case she texted me when she got off work. I don’t do any of that anymore. When sleep comes to me, I snatch it before it runs away.
Before I figured out why I’ve been feeling so sick, my grandmother started getting onto me because sometimes I sleep the whole afternoon away. She thought I was being lazy. She blamed me for not being able to sleep at night and consistently nagged me to “fix” my sleeping schedule.
However, some nights I sleep 6–10 hours, and I still need a 4 hour nap in the middle of the day. I’m still exhausted. It’s not because I just don’t feel like doing chores. It’s because I literally have no energy.
Now that we’re on the same page about my illness, my naps are no longer chastised. I take a nap when I need to and don’t worry about how long it takes me to wake up. I don’t feel guilty anymore, because I know my body needs the rest. Sometimes I don’t really want to put my Switch down to nap, but eventually my body convinces me.
I was scared to write about my illness at first. After I found the answer I was desperately looking for, I wanted to shove it back wherever it came from. I don’t want to be so sick that I’m labeled “disabled.”
The truth is that I am. I can’t go put in a 8–10 hour shift. I can’t work 50 hours a week, week after week. I just can’t. My body can’t take that kind of torture. Some days I can barely make it to the kitchen. Sometimes I’m either using a cane or a walker just to make sure I don’t fall. I’m 22 with a walking aid, and I’m embarrassed, but much less embarrassed than I’d be if I fell on my butt in WalMart because I didn’t have my cane.
I don’t want anyone’s pity. I’m not about to make a GoFundMe or start pointing out my KoFi link in every piece I publish. The attention you lend me to read my work is enough for me. Your engagement means the world to me.
A year ago, I was sure people didn’t want to read full articles written by me. Now, I see the same people pop into my notifications quite regularly. My voice is being heard. I am a trans, black man that also just happens to be chronically ill.
Battling a rare disease gives me another reason to make sure my voice is out there. Someone else could have Allagille Syndrome or another chronic illness that makes them feel chronic pain and stumble across my work. They’ll know that they’re not alone. They’ll know that Brian hobbles along with his cane too, and it might make them feel better just like my pieces make LGBTQ people feel less alone.
If you’re reading, let me introduce myself. My name is Brian and I’m chronically ill. I walk with a cane at the young age of 22. I’ve already had two organ transplants. I’ve been stabbed with needles more times than I could count. Hospitals have become my second home. Pain is a stubborn part of my life, like that annoying uncle you can never seem to get rid of.
If you’re reading this and you can relate to any of these things, I just want you to know that you’re not alone.
Random Benefits of Being Chronically Ill
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