Jay: A heart set on living
From the minute you meet Jay Smith, it’s like being with an old friend. We recently reached out to ask the 39-year-old Austin, TX man to share his experiences as an avid Tobii Dynavox PCEye Mini user. Within just a few hours, he emailed us a reply with a friendly “Howdy!” on the subject line.
A master of many things, Jay is a family man first. His choices when asked to describe himself in three words are: happy, loving and determined. You get the feeling Jay is determined to stay that way, no matter what. He makes it look easy though life has tossed some serious challenges his way in the more than three years he has lived with ALS, the progressively debilitating condition also known as Lou Gehrig’s disease.
“Despite my disabilities, or maybe because of them, I enjoy life to the fullest,” he says.
With the PCEye Mini, an eye-tracking device slightly bigger than a pen, Jay has the power to drive his wheelchair, as well as to control the TV, lights, thermostat and music in his house. Most important, the technology lets him enjoy those things that make life complete, like having conversations with his wife Melissa Mekosh, and helping daughters Loghan, 9, and Peyton, 7, with their homework. Jay has text-to-speech software on the device for communication.
Team Gleason, the charitable foundation former NFL star Steve Gleason established during his own fight with ALS, purchased the devices for Jay. When connected to a standard Windows computer with the separate EyeMobile Mini bracket, the PCEye Mini emulates a keyboard and mouse through its Windows Control software. Jay made our day when he shared this video showing how he uses our products to control his wheelchair through a method he devised using the PCEye Mini, custom software and a prototyping platform that allows electronic devices to interact. He created a similar setup to control his bed.
"I am literally on my device every waking hour," Jay said. “It is important to not limit yourself to what you can do with it. “
He especially likes that the technology gives him the power to reach and touch the world with his ideas. His website, www.every90minutes.org, brings ALS awareness to a new level while his 90 Foundation focuses on ALS research and a cure for the illness. The names represent the unsettling statistic that someone is diagnosed with or dies from ALS every 90 minutes. Jay’s columns for the Huffington Post, meanwhile, shed welcome light on the new day-to-day realities that ALS creates including the fact that life remains good, anyway. He takes a lot of inspiration from those with disabilities who, like him, are determined to lead an active life and from Melissa, his high school sweetheart. They’ve been married for 14 years.
The roots of Jay’s creative professional life were established years before that. He earned a fine arts degree from the University of the Arts in Philadelphia, where he studied multimedia. His somewhat offbeat musical career began with his invention of the Viditar during his senior year. The guitar-shaped instrument had buttons and sensors he controlled to perform audio and video samples in real time. After graduation, Jay played with the rock band Sinch across the United States for a few years. He also had a teaching job at the university that he found extremely fulfilling.
Seeing a future of uncertainty for working musicians, Jay embraced a new path and founded Livid Instruments, a company that develops innovative musical instruments and equipment. He worked there for more than ten years before his ALS diagnosis and now keeps a hand in the business as an advisor and board member. Pleased to count some top names in the music industry among their customers, Jay was thrilled to be the 2014 Popular Science Award recipient for inventing the Guitar Wing, a wireless controller for the electric guitar or bass.
While technology has been a guiding force in his life, he finds his soul and spirit in people and places. “Traveling is my absolute favorite thing to do,” he said, “especially with my family.” They’ve ventured from coast to coast and beyond. Still, Jay says, there is no place like home. A New York City native, Jay fell in love with Austin while on tour with the band in 2002. Within two years, he established his home and business there. “Texas is where my heart is.”
You can see by the photos on the Every 90 Minutes Facebook page that the Smiths are a festive bunch wherever life takes them. It is likewise obvious how well they take care of each other, whether Jay is looking after his daughters at the beach, laughing with his wife or accepting their help with daily activities. The four of them sit down to dinner as a family each day, though Jay no longer eats through his mouth. Jay and Melissa spend some time hanging out together and reflecting on the day’s happenings when the girls go to bed.
“I am in awe of her selflessness and strive to be more like her,” Jay says of his wife. Acknowledging that being a father is his most important role, Jay say he’s excited for his daughters to grow up and start families of their own. “I am really looking forward to being a grandfather someday.”