A person sits with shoulders slumped as lots of eyes float around them and stare.

Things I Wish People Knew

Today I wanted to talk about SMA (spinal muscular atrophy). Most folks out there aren’t exactly experts on it, so I want to break it down in simple terms. SMA is a condition that messes with your muscles all over your body. Depending on the type, it can even take away your ability to walk. I’ve got type 2 SMA, and I’m on the weaker side of that category. That means I’m not super mobile, and lifting things is a challenge. But hey, I don’t expect everyone to become SMA experts; I just want folks to see me for who I am.

SMA doesn't affect my mind

Now, here’s what I wish people got when they meet me for the first time: my brain is working just fine. I don’t need my parents or anyone else to speak for me. I can chat and express myself just like anyone else, especially once I’m comfortable. In fact, you might have a hard time shutting me up!

My voice is my most powerful tool—it’s how I tell people what I need and how they can help me out. But you know what? Explaining every little detail of what I need and how to do it can be really exhausting. Imagine you’re in bed, and you’ve got to guide someone through every single move your body needs. It’s beyond frustrating when you know what you want but can’t quite explain it in a way the person helping you can grasp. It’s like an endless trial-and-error game.

I need others for basic activities

Now, let’s get into the nitty-gritty of daily life. I wish people truly understood how uncomfortable it is to rely on someone for basic stuff like showering, getting dressed, and using the bathroom. I can kiss the idea of privacy goodbye because I’m in a constant state of vulnerability.

Those moments when most people get to enjoy some “me-time,” like in the bathroom, are foreign to me because I can’t physically take care of myself. Being touched all the time can be super draining. Some days, I’m so fed up with needing help or being moved around that I just crave one minute of independence. But then there are days when I miss that touch, the feeling of simply interacting with the world. My hands are limited to a few things: my phone, the joystick on my wheelchair, petting my dog, holding a drink, or clutching a blanket.

I long for simple joys

I long for the simple joys of touching doorknobs, running my fingers along a countertop, making a meal, or doing chores—things that others might complain about occasionally, but I’d gladly take on.

And then there’s the awkwardness of people staring at me in public. It makes me so self-conscious. I can literally feel their curious eyes on me, like I’m some kind of sideshow. Honestly, I’d much prefer a friendly “hello” or a wave instead of being stuck under their gaze.

Truth is, I’m just like everyone else when I’m out there shopping for clothes, home decor, or groceries. The only difference is that I rely on a wheelchair to get around. When kids come up to me with random questions, I love it. I encourage their curiosity instead of shushing them. Their endless questions and kindness give me hope for our world and brighten my day.

Everything drains my energy

Let’s talk about my energy levels. I get tired really quickly. My daily routine feels like an intense workout for a pro athlete, and almost everything takes me longer to do—simple stuff like brushing my teeth, having a meal, or even signing my name.

To give you a clearer picture, think about the time it takes for you to accomplish these routine tasks. Now, multiply that by a significant factor, and that’s roughly what it feels like for me. It’s not a complaint, mind you; it’s simply a part of my life. This constant demand on my energy reserves is an inherent aspect of living with SMA, and it’s one of those things that I wish people could understand a bit better. It’s not just physical exhaustion; it can also take a toll on your mental stamina as you navigate the intricacies of daily life with a disability.

It comes and goes in waves

But you know what’s interesting? Some days, I’m genuinely happy with my life and my disability. Then there are other days, even weeks, when I’m just angry at the world for what it’s taken from me.

Living with a disability isn’t always a walk in the park. It’s tough, challenging, and sometimes heartbreaking. But it also changes your perspective on the world. You start seeing more good than bad, and you learn to appreciate things in a unique way.

So, here’s the bottom line: at the end of the day, I’m just like you, my friend. I’m just navigating life with a little extra help along the way.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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