JOHN, running a stream

Who is JOHN SAYE? I’m a writer of science-fiction and fantasy recovering from total-body paralysis. I’m also a part-time dungeon master, occasional puppeteer, traveler., filmmaker, husband and father. I wear a lot of hats.

Hi there. I am John. I’m in therapy recovering from GBS (Guillain-Barré syndrome), an autoimmune disease that attacks the nervous system. It’s effects on me have been harsh, but through the beauty of tech, my plan is to ride my hobby once again, back to health.  GBS paralyzed me, from the neck down for a year. I’m still working through therapy, and getting strong again. I had tons of muscle atrophy, spent 250 days in three different hospitals and five months on a ventilator. My nervous system was a wreck. Therapy is going to get me the rest of the way there as my nerves regrow from scratch. Therapy, my wife, family, friends, writing and D&D.

I had to learn to talk again. The myelin sheath on all our nerves coats and protects them, insulating the signals as they bounce from the brain to our feet and hands and back. I was robbed of that. Of all things, I managed to get a disease that I’d never even remotely heard of before, that tried its best to kill me. My wife and some of the folks at one hospital worked out there were no more than an average of 600 people per year who get GBS as bad as I had it each year, worldwide. 

I was lucky they diagnosed me as quickly as they did. It probably saved my life.

So, I Stumbled. I lost the ability, to walk, while visiting my folks with my wife and kids for Easter, and essentially, after an infected toe that had to be removed, and several weeks in the hospital, GBS really kicked in and I lost the ability to lift my arms as well. My fingers lost grip, and couldn’t press buttons, or slide my finger to press on my smart phone. They still can’t yet, years later.

A case of GBS is not typically as extreme as mine. Over a year after coming home from the hospital I’m still not walking. I’m not strong enough to sit up on my own. My arms are okay, but the fingers not so much yet. I can push on the floor for thirty seconds with my feet and not pass out if my physical therapist is bear-hugging me, and I can now grip some small light objects. I’ve got a long way to go, but I get better slowly every day. I’ll walk again. I can see the end of the tunnel but it’s still a ways off.

I’m getting better,

My passion is really for writing, so I’m concentrating on that. I still can’t type with my fingers, but I’ve learned to use my iPad to write with a stylus attached to my palm. One letter at a time, moving forward is the best I can do. 

I muscle atrophy is no joke, and while I’m getting stronger, I’ll have to learn to walk again and strengthen my legs to support my weight again. 

I hope you’re on for the ride.