How to Speak When You Can’t

January, 2021

One of the tricks you learn when living with ALS is communicating when you can’t talk or move. Although there are tools now available that are both lifesavers and lifelines, there’s no way you can have the intellectual discourse over the socio-economics of wood fired pizza that you had when you could speak.

I’ve blogged previously about the wonders and frustrations of eye tracking technology. I understand that humans can speak at a rate of 180 words per minute, more after a commuter cup of french roast. I’m lucky if I can get 20 words out the door in an average minute. In addition, humans have a tendency to change the subject of their conversations with frequent regularity. So, even when on my eye tracker device, I’ve had to develop some techniques to engage in conversations. The techniques are all based on the fact that well timed responses to conversation topics are just impossible.

My primary strategy is the butt-in approach, a strategy I perfected in my pre-ALS days. The thing about this approach is that it takes advantage of the slack you’re given because you can’t talk. If you want to say something you just eye track it in and hit the speak button and out comes your comment. If anybody calls you out for being rude, you can butt-in later to apologize for your slow eye tracking abilities and they will feel really bad.

The comment you choose depends on whether you want to join the conversation or start a new subject. If the former, you’ve got to recognize that the subject matter of the conversation will have changed at least twice since you thought of your witty rejoinder. Which means your rejoinder better have some context if you want to rejoin the discussion. Which means that your message will take even longer to eye track. Which means that the subject matter of the conversation will have changed yet again. So when the conversation is around one of your pre-ALS culinary creations, butting in with “it was really tasty” when the conversation has shifted to housebreaking a puppy juust won’t cut it. Instead of “it”, try “the chocolate pasta” and everyone will understand you are referring to your cooking and not the puppy. Really. Trust me on this.

If instead you just want to hijack the conversation, such as when they start discussing your latest gastrointestinal accident, just butt-in with a new subject, such as your communication partner’s wanton consumption of cheap gossip magazines. Because you have the advantage of sounding like a stoned robot, and because people just love to change the subject, the conversation will invariably shift to the budding romance between Hollywood’s “It girl” and a dashing space alien.

Sometimes you want to show some respect for your caregiver by using a simple phrase in their native language. Because your machine is set to speak english, phonetic spelling is necessary. So, instead of saying “Thank you very much my friend,” you would eye track “Moo chus gra see us me a me go.” Your caregiver will love you.

Last, these machines suggest phrases based on past use. This allows me to easily automate common requests. For example, when Door Number One starts knocking, I select the letter “n” on my eye tracker, and up jumps the desired text which I duly select. When I hit the speak button the stoned robot butts-in with: “Need to drain Mr. Happy.”

When I get around to the next segment, I’ll discuss the more challenging approaches required when answering the dreaded “or” question, dealing with gun jumpers, and communicating without an eye tracker. To prepare for this next class, please tie yourself to a chair, put on a gag, and communicate, using only barely audible grunts, that your nose really itches.