As difficult as it will be, please try to keep your hands out of your pants until after you read this.
My name is Shane. Many of you know me, some of you don’t, and a couple of you only follow me to ask daily anon questions about my sex life (super creepy btw). For those of you who don’t know me, I’m the skinny dude with wilting flower wrists munching on pizza in the picture above.
See the position that I’m in? With my right hand cocked up under my chin, using my left thumb to hold my hand in place?
This is how I have to chew food these days.
I was born with a disease called spinal muscular atrophy that makes my muscles waste away as I get older. As you can see, the deterioration affects my arms and legs, but it also means my lungs are losing their ability to breathe. My jaw is losing its ability to speak. Some days, my neck has trouble supporting the weight of my own head.
As I’ve lost ability, I’ve been forced to adapt the way I do everyday things, such as eat. You can’t tell by looking at me here, but this downward progression is a monster to live with, both mentally and physically.
My issues with chewing began in 8th grade, when my mouth suddenly stopped working during lunch in the school cafeteria one day. I was mid-bite on a massive beef burrito, so when my mouth failed to function, I had to spit everything out onto the plastic tray in front of me. It was like a volcanic explosion of sour cream and cheese and salsa and spit. My friends looked at me with total shock and confusion. In my embarrassment, I muttered something about choking and tried to laugh it off.
It didn’t go away though, and over the next few months, I found myself repeatedly unable to chew the food in my mouth.
Instead of giving up and wallowing in yet another ability lost because of my disease, I adapted. By jamming my arms up under my jaw as you see in the picture, I was able to assist my mouth with the chewing motion. At first it was embarrassing. I felt ridiculous in this position, so I often chose not to eat in public rather than use my new method. But eventually, I decided that eating and enjoying food were more important parts of life than strangers giving me quizzical glances. That was about ten years ago, and I’ve been eating like a deformed kangaroo ever since.
The fun part is that my disease is going to keep getting worse, and I’ll continue to lose the abilities I currently have. For instance, in the past year, it has started becoming harder to even get my arms into the “eating position,” so my girlfriend and I are already experimenting with new methods. We’ll figure it out, I’m sure of that, but the mental implications of constantly getting weaker make some days rougher than others. Living with muscular dystrophy means constantly finding alternative ways to thrive.
I want to ask all of you a favor tonight. As many of you know, I run a nonprofit organization that provides adaptive equipment to people living with my disease. These are items that give independence back, and help people maintain important abilities, like moving, eating, breathing, and sleeping.
This December, I’m trying to give adaptive technology to eight kids living with muscular dystrophy.
All I’m asking is that you share this post. You guys have helped me accomplish some pretty spectacular things in the past five years, and I’m hoping you know this cause is so fucking important to me that you will want to lend a hand.
If you do wish to support the campaign, you can do that here: https://igg.me/at/etSyEPjSSLE but the power of a reblog is just as helpful!
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