September 15, 2017 What’s it like to be terminally ill?

Steve Spohn has been living with that label since he was born. Now he’s 37 (that’s him on the right).

He’s written a heartfelt essay about his life and existence, titled “Turning 37 as a Terminally Ill Patient”, and it’s well worth a read.

“Every time I get a cold I think about the way that someone with my disease dies. For most people with Spinal Muscular Atrophy (SMA) who are lucky enough to live as long as I have, the end comes in the form of pneumonia or infection. After years of fighting, the body becomes tired. Every time I get a cold I know that I’m rolling the dice. The cold could easily turn into the flu or bronchitis, and that can quickly turn into pneumonia or sepsis. Thanks to diminished lung capacity and a compromised immune system, from the moment I catch a cold, I could be dead within a matter of days.”

When he’s not writing inspirational articles, Steve dedicates his time to helping other people with disabilities enjoy gaming through The AbleGamers Charity. Their geniuses custom-design and modify controllers for accessibility. A lot of it is about solving problems as they arise.

Here’s an example from Steve: “There was a kid who wanted to play the Kinect. His arms were deformed from birth, so his finger came out from just past his shoulderblades, and the Kinect couldn’t detect them. All we did was hand him a piece of packing foam from our booth and it worked!”

Shane Cubis
is a contributor to A•STAR