The below essay was written by Peter Kougasian using only his eyes. Peter was diagnosed with ALS in 2016, and resided in a care facility when he wrote this piece over the summer of 2021. Peter’s words express not only his love and sense of humor, but also provide insight into the challenges of living with ALS, especially in a care facility. Our hope is that Peter’s insights can help others understand the importance of eye gaze technology and the training that caretakers and clinicians need to ensure ALS patients can stay connected. Peter inspired and made laugh everyone he communicated with until his last day. Peter passed away on Sept 6, 2021, but it is our hope that his words will help others for years to come.
Every day of my life, once an hour, from eleven in the morning until after midnight, I get a text. The message is from a friend who is a clinical psychologist in British Columbia, and it always asks the same thing: are you okay? My friend knows if she doesn’t get an answer that I am somehow separated from my eye gaze recognition computer, or that it has crashed.
And that in turn means that I am likely alone in my room in the nursing facility, unable, due to ALS, to communicate with anyone or summon help. And so, if her text goes unanswered for too long, my Canadian friend calls my wife Beth, and Beth calls the nursing station and asks them to send someone to my room.
Because separated from my tobii eye gaze computer, I am largely helpless. I use the machine as a nurse call bell. I use it to speak. I use it to text and email. I use it to access the internet. I use it to operate the television in my room. Without it, I speak only to God.
Recently, a nurse said something that startled me. She had just finished caring for me, and before she left, she asked, would you like me to adjust your screen?
And why did this startle me?
Like any very advanced technology, the tobii can be intimidating.
For most people, the conventional wisdom is, don’t touch it so you don’t make it worse. This is human nature and completely understandable. But it also means most people never acquire the skills for even the simplest of interventions.
And so, we have given some thought to how to guide people how to help me if they happen upon me in a mute condition. We taped detailed instructions to the back of the screen, but no one ever thinks of looking there. So a therapist put a sign on the wall saying, there are instructions taped to the screen – but no one read the sign.
When my device is not working, I have no alternative but to wait, sometimes for hours, for someone to enter my room for an unrelated reason, and try to summon their attention. This I do by trying to make eye contact, and then darting my eyes to the screen repeatedly.
But sometimes the caregiver does not make eye contact. They enter, take my blood pressure, and leave. And I am resigned to wait some more.
The problems generally fall into two categories. Either the device is out of alignment with my eyes, or it has crashed.
The eye gaze technology is truly amazing, but it depends on a very delicate connection between my eyes and the screen. If they are even slightly out of alignment, communication is difficult or impossible.
It is very hard, just by looking at my face and the screen, for the inexperienced to align them successfully.
So there is displayed on the screen a small Track Status gauge, a dark square that represents the screen, and two white dots showing where my eyes align within it.
But there is a knack even to using the Track Status gauge, and often the caregiver will ask me, What do you want me to do, when it is precisely my difficulty communicating that we are trying to address.
If, on the other hand, the problem is that the machine has crashed, the only solution is to reboot. Step one, taped to the back of my machine, is to turn it off by holding down the power button for ten seconds.
And here I have learned something about human nature. Tell someone to hold a button down for ten seconds, and odds are they will hold it down for maybe four. The machine does not reboot, and the caregiver is perplexed.
I even composed my own instructions that read, “ten full seconds. Nine seconds is not long enough,” but it made little difference.
If everything is working, though, the magic can begin. I have resolved to make at least one person laugh hard every day. And believe it or not, that’s easier to do using the machine, because it is so unexpected.
The unsuspecting visitor to my room finds an essentially paralyzed man with a fixed expression.
The visitor murmurs something innocuous like, his hair is shorter. Suddenly, a disembodied voice replies, I’m gorgeous! And in that instant, it seems like Voltaire never died.
Peter Kougasian was Assistant District Attorney in New York. He was also a professional Comedian and Close-up Magician, who performed regularly in the New York City magic scene as “Uncle Pete. He was beloved by everyone that met him, including the entire Bridging Voice team.