First Words

Posted by Thomas Jakobs on October 11, 2011 | 5 Comments

We've been working with a new family. Billy had a brain-stem stroke back in December of 2010. His disability is so severe that none of our technology worked for him. I talked with our clinical experts and there doesn't appear to be any equipment available – anywhere – to help him. This guy is hard. Really hard.

When we met Billy a few months ago I thought we’d figure out how to help him – yet week after week we failed. We just couldn't find a reliable way into Billy's mind. His body was too uncooperative. I started to worry that we would fail him.

When we finally figured out (with the help of Billy’s speech pathologist and family) that Billy can purposefully move his jaw up and down a little, we also found out that his field of vision is very small. Billy’s eyes don’t move left or right, just up and down. He has trouble keeping them open. This complicates things more. I started to have serious doubts that we could help him.

We had to rethink everything. We can track Billy's minimal jaw movement with AccuPoint, but our standard software is much too complicated. Erik started to design some simple spelling interfaces. A research group that we work with (the RERC) allowed us to use grant money to create new minimal movement interfaces for people like Billy. And then it happened! Billy wrote his first words using his jaw movement. First “cat”, then “dog”, then “hello”. No mistakes, but very slow. It takes him about 10 seconds to write one letter. We made some minor software improvements and brought the new version to him yesterday. He wrote “hi dad”. His Dad smiled big and told the folks in the room “I told him he had to write that!” I was so relieved that he could still use Erik's software. People like Billy are so medically fragile that getting consistent body movement over multiple days is not to be taken for granted.

Now we start the hard work of making it easier and faster for Billy to communicate independently. At each step along the way, we’ll send our software developments to our clinical teams and they’ll try to use it with their clients who can’t use any other technology. We’ll learn more, make improvements, and try again. It is a slow process.

So I have been asking myself a question about all of this. Who is helping whom? While Erik is writing the software, I think Billy is carrying the heavy load. He is giving us the tools to help others trapped in their uncooperative bodies. He is teaching us patience. He is merciful to us when we make mistakes. He is persistent. He is hard working. He is vulnerable.

He is teaching us what it is to be human.

Billy’s simple first words might not seem profound to you but they will change the world. They have already changed me. I know who is carrying the heavy load and I am grateful to him for letting me tag along.