By Burke M.A. CCC SLP
Introduction
In the heart of the 1980s, a unique case crossed my desk at Christ Hospital in Jersey City. It was July 1984, a time when the digital world was just budding. This story unfolds my decade-long relationship with Mary, a resilient woman from Kearny, whose condition led me to blend my expertise in speech therapy with emerging computer technology.
Meeting Mary: Understanding the Challenge
Mary, a former nurse and a mother of five, was living with multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). When I first visited her, she was confined to a wheelchair, with minimal control over her limbs and unable to speak, communicating only through groans. However, her keen awareness and cognitive responses were unmistakable, conveyed through facial expressions and head movements.
Identifying a Solution: The Advent of Augmentative Communication
It was evident that Mary was an ideal candidate for augmentative communication. The challenge, however, was the nascent stage of assistive technology during that era. The first augmentative devices were emerging but were prohibitively expensive, and Mary’s insurance wouldn’t cover the costs.
A Novel Approach: Harnessing the Power of Home Computers
July 1984 was not just another month; it was a period where personal computers were becoming accessible. My father, a system analyst and computer programmer, and I were keenly following the evolution of home computers. Brands like IBM were making waves, and assembling a PC from scratch was a viable option.
We attended a computer show, acquiring essential components—a case, motherboard, monitor, speech synthesizer, and a small printer—all under $300. Combining my knowledge with my father’s computer skills, we embarked on building a bespoke communication device for Mary.
Crafting the Communication Device
The device we created featured a simple yet effective design. It had four rows of letters. Mary would select a row and then a specific letter as it was highlighted. A speech synthesizer articulated the chosen rows and letters. Mary interacted with the system using a chin-operated switch.
The Moment of Truth
After about a month of diligent work, the system was ready. Amidst a personal hectic period, with the recent birth of my son, I managed to set up the device at Mary’s home. I provided a brief explanation of its operation, promising to return for more detailed training.
So about I week later, I went to my mailbox and was a little surprised to see a letter addressed to me with a return address of Kearny – upon opening I saw it was a letter from that Mary had typed.
I almost could not believe what I was reading, Mary the person I met with prior, who had no way of communicating beyond responding to basic yes/no questions was now speaking to me fluently. I shaking as I read Mary’s words, thinking of amazing resilience.
Below is the text
DEAR JOHN AND MARY
FIRST OF ALL I WANT TO CONGRATULATE YOU ON THE BIRTH OF YOUR SON JOSHUA,
MARY IF YOU COULD HAVE SEEN THE LOOK ON YOUR HUSBAND’S FACE, WHEN HE CAME TO THE HOUSE THAT DAY, I BELIEVE YOU WERE STILL IN THE HOSPITAL. I’VE SEEN THAT LOOK ON MY OWN HUSBANDS FACE.
I WANT TO TAKE THIS OPPORTUNITY TO TELL YOU HOW MCUH I REALLY APPREICATED ALL YOUR LONG HOURS OF HARD WORK AND DEDICATED DEVOTION TOGETHER WITH YOUR FATHER. I DON’T THINK YOU REALIZE HOW THANKFUL I AM, AS THIS I MAIN COMMUNICATION.
I KNOW YOU TOLD ME NOT TO DEPEND ON IT, BUT IT IS AHD FOR MY FAMILY, ALSO WITHOUT IT , I EVEN WRITE A RADIO BROADCASTTE ABOUT YOU. I FEL YOU SHOULD BE ACCREDITED SOEHOW FOR ALL YOUR DEDICATION OF WHICH YOUVE HELPED SO MANY PEOPLE.
I CAN WRITE SO MANY LETTERS NOW, THANKS TO YOU.
I WISH YOU AND YOUR FAMILY MUCH HEALTH AND HAPPINESS . GOD BLEES….
P.S. JOSHUA IS A VERY SPECIAL BABY BECAUE HE WAS BORN ON MY BIRTHDAY, SEPTEMBER 17 TH.”
I was amazed at how quickly Mary learned to use the augmentative communication program.
For the next ten years until her passing, she used it as her primary method of communication. Mary wrote heartfelt letters to friends and family, helped her own children their homework, and even gave radio interviews about her experience. The simple assistive technology program gave Mary her voice back and allowed her to connect meaningfully with family and friends.
This Experience not only marked the start of a significant chapter in Mary’s life but also a milestone in my career as a speech therapist. It highlighted the incredible potential of technology in augmentative communication, especially during a time when such innovations were just at their dawn. Over the next couple of years, this time with my programming expertise Mary’s program was updated to include word prediction and environmental control (for her lighting and TV) – generally the device ran pretty much non-stop for close to 10 years. With the help of the device Mary simply went about the business of raising her children.
I remember one visit when Mary related by pointing to the corner ceiling that she left her body – and was able to view herself from above the room. She said it was not yet time for her to leave – and that she returned back. I remember Mary conveying the thought that this was a beautiful religious experience which only deepend her faith.
A number of years years later I received a call from Mary’s family that Mary had taken a turn for the worse and had been hospitalized. They wanted me to set her device up in her Hospital Room.
Upon entering her room, Mary was in a deep sleep as I began setting up her device next to her bed. The room was quiet except for a radio that was playing music. Nearing the end of device setup a song by the Commodores started playing and I was struck by the opening lyrics;
“Thanks for the times that you’ve given me
The memories are all in mind “
I remember thinking as I neared finishing setup, that given the present circumstance, Mary might not be able to again use her device. And in essence, somehow, Mary found a way to thank me for my time and service.
Mary passed that evening – but her memory as a person and therapist will stay with me forever.