Welcome to My Eye Gaze World

I took it for granted that you all know that I use eye gaze technology (I type with my eyes) to communicate in all forms: speaking, texting, and writing everything from emails to this blog post. That is, I took it for granted until my sister, Sephrah, said something that made me realize that only the people who have seen me within the past four years know my reality. In honor of ALS Awareness Month, I will now attempt to show you what it’s like to rely on eye gaze technology. 

I have to type with my eyes, because I’m completely paralyzed except for a little bit of movement in my legs. I can still feel everything, which makes itches a lot of fun. 

Before I continue, I want to clarify that I didn’t get ALS and immediately go to eye gaze. First, I was still able to type with my hands. As my right fingers became weaker, I did a modified version of touch typing with just my left hand. That lasted for about a year. When my hands got too weak to type, I used a voice to text software, which worked well, but I couldn’t use it around other people, both because the software wouldn’t work well with ambient noise, and because I was still teaching, and had to write confidential information about students. 

My next phase started when ALS affected my speech so much that the software wouldn’t work. Jackie, the tech specialist from the ALS Association, came to my house and attached a camera to my laptop and put a silver dot in the corner of my glasses. This system let me manipulate the cursor by moving my head around to select the letter or icon I wanted, and then click by waiting for a few seconds. It was my favorite accommodation. It was fast, and the process led to few mistakes. 

Eventually my neck got too weak for this system. Enter a tobii dynavox touch tablet with built-in eye gaze technology and a giant clicker button, which I held on my lap. I would use my eyes to select what I wanted, and press the button on my lap the way most people double click a mouse. Eventually, I couldn’t  do the button anymore. I’m 100% eye gaze now. 

Every time someone rolls me up to my device, the first thing we have to do is track my eyes. That means we line up the machine with my eyes. Here’s what the tracking screen looks like. 

The white circles are my eyes and they have to be centered, and the white arrow has to be level with the white eyes. Distance, height, angle…it is harder than it looks, because if it’s not just so, one or both eyes will disappear, and the person who is helping me has to move the device around until it gets fixed. The lights on the bottom are what track my eyes. If they are blocked, I can’t do anything.

Next, I calibrate my eyes, which synchronizes my eyes with the machine – ideally. I calibrate by following circles around to nine points on the screen. See below for what the end result should look like. If the tracking is not perfect or my eyes are tired or watering, my eyes won’t be synchronized, and I will have trouble typing or doing anything with the machine. This usually means starting over again from the top with tracking and calibration.

This is the keyboard (see below) I  use to type what I want to say and I often type other things and cut and paste into other documents, because it’s faster than the windows keyboard. I wanted to type “…I make mistakes all the time.”, but this is what I actually typed.  That’s why I don’t like people reading what I’m typing over my shoulder. I make a lot of mistakes. 

Notice that the question mark and other punctuation marks or numerals are not on this screen. For them, I have to switch to other screens.  However, my biggest complaint about this keyboard is that there is no caps lock anywhere. The only way to capitalize every letter in a word or acronym is to do it one letter at a time and hope that I don’t select the wrong letter on my way. Imagine selecting whatever you look at. That’s my world. 

It’s maddening when there is a video or animation on part of a website I’m looking at, because it is impossible for me to look away. You know the advertisements on YouTube that you can skip after four seconds? It takes me much longer than four seconds to skip the ads, because I can’t stop watching them. It’s like telling myself not to look at a car accident on the freeway; I can’t help but look anyway.

One more major complaint about eye gaze technology. No one has figured out how to get it to work with sunlight, so I can’t use it outside or in the car. That is the reason I don’t like to spend a lot of time outside, which is unfortunate, because I love nature. I need someone to create a collapsible awning, like the ones on baby strollers, to extend over my head and the device, shielding us from the sun.

I used to think that eye gaze technology had existed since the 1960s, because Stephen Hawking used it, but no. He used a muscle in his cheek to do all of his communication, including writing books! I don’t have any muscles in my face that I can control to communicate. I recently found out from Jason Becker, who has been living with ALS for 30 years, that 20 years ago, eye gaze technology was terrible. For all the complaining I do about my device, I am lucky to have access to the assistive technology available today. If I had been diagnosed even just 5 or 10 years earlier, I would be silent by comparison and certainly wouldn’t be able to write.