To my surprise and delight, I believe I may have developed a following of regular readers. A tiny, loyal readership. You know who you are. You are the kind souls who ask about the next post, adding that you have missed hearing from me. “No pressure,” you say, “we know you all have plenty on your plate.”
Indeed, living with ALS is a recipe for a full plate: A smorgasbord of high dollar, unsavory options that are hard to swallow.
I lost the ability to use my fingers on a keyboard many months ago. So, I switched to dictating texts, emails, and correspondence. The last two blog posts were dictated using voice-to-text in Word.
When my voice started to go, Siri and every one her compadres, across every last app and device, abandoned me.
Frankly I felt the breakup coming with one particularly noteworthy text to a former colleague. Siri was in a mood, let’s just say it.
Here is how it went down.
I dictated, “Congratulations on your Grand Rounds, I’m sure it was a great success”
Siri comes back with, “I’m sure it was a sexy ass.”
“Really Siri?”, I say out loud.
It needs to be made clear here that the limited, remaining dexterity of my right pinky and ring finger makes sending a text far more likely than deleting a text.
With great care I prevail, and try again, going for BBC clarity.
Once again Siri delivers her cheeky retort. (Like I said, about the mood.)
Avoiding a second near-miss, I persist, this time with gusto and added volume.
The result, finally, “…success.”
Ah, but for a fleeting moment. Wait for it. Yes, autocorrect conspires against me. No doubt in collusion with Siri.
Sexy Ass never gets sent, but it heralds an epic breakup, and a pause for all my writing.
EyeGaze technology has its roots in the early work of the American psychologist Edmunds Huey. In 1908 Huey used rudimentary contact lens with a hole over the pupil and a stylus affixed to the lens to record eye movements. Experiments continued with increasing sophistication throughout the century. In the 1990’s engineers initiated work on computer applications, and by the 2000’s we had the first, rudimentary augmented and alternative communication (AAC) using EyeGaze. Today there are more than a dozen EyeGaze platforms for AAC.
Current EyeGaze platforms utilize tiny cameras and beams of infrared light to track eye movements across a screen. After calibrating one’s eye movements to the platform (a simple process), the user controls the cursor with their eyes. Resting the cursor over a letter on the keyboard types the letter. Similarly, holding the cursor over an app opens the app. Many of the systems come with AAC programs to generate speech, word by word or using prepared phrases. As you might imagine there is a steep learning curve.
EyeGaze technology is inevitable for a majority of people living with ALS. I continue to be amazed and inspired by friends who are lightning quick in the Zoom chat using only their eyes to type. Others work with spreadsheets, write novels, or create art.
Now it is my turn.
Like every major loss that comes with ALS, I experience grief as sadness and disappointment. The loss of intelligible speech creeping ever closer shines new light on the opportunities afforded by this miraculous technology. And my grief is buoyed by the hope that comes with writing again.