On Wednesday, April 21, the Human Journey Colloquia Series featured Robert and Maureen Paulson to speak on Robert’s memoir, “Not in Kansas Anymore.”
The memoir documents his life journey and determination through Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease.
“ALS is a neurological disease that controls the body’s nervous system, which in turn activates the muscles, both voluntary and involuntary,” said Robert Paulson.
The colloquium began with Associate Professor of English Cara Kilgallen introducing the guests and acknowledging Robert’s New York Daily News publication and memoir.
The book is structured around his journey from Kansas to New York, which led to him becoming a patent lawyer.
In attendance at the colloquium included Sacred Heart University’s President John Petillo, students, faculty and the Paulson’s friends and family.
During the colloquium, Robert shared his article in the Daily News.
“Unlike the COVID-19 virus, which gives warning signals, rise in temperature, chest tightness, coughing, ALS gives no signal of impending death,” he said. “There is, however, a silver lining for those afflicted with ALS: it has no effect on the brain or vision. And that brings the ALS patient full circle back to the world with the aid of an eye-responsive computer.”
Due to ALS, he has lost his ability to verbally communicate, but technology has given him a way to communicate. “With the computer, there is no limit on what I can do with my eyes and my brain. And that is true for everyone with ALS,” said Robert.
Similar to the COVID-19 feeling of being isolated, ALS patients are socially isolated every day.
“For the ALS sufferers, that loss is replaced by a computer screen. For the socially isolated due to the viral pandemic, it is eerily similar, as they too must communicate on disembodied computer screens,” said Robert.
The colloquium informed the listeners on how COVID-19 gave society a chance to learn how to connect with Robert and other ALS patients.
“Robert related the isolation and loneliness ALS brings to the current pandemic, which helped put into perspective what many with ALS suffer,” said senior Morgan Buzga. “ALS has limited Robert physically but not mentally. With a computer system, Robert was able to communicate to us by using his eyes, showing how the power of technology is life changing for people with disabilities.”
Maureen Paulson, Robert’s wife, expressed the lessons she has learned living with Robert. She spoke about how she gets through her day-to-day and also stays inspired.
“I’ve learned to leave the past behind and keep moving forward. It sounds hard to do, but we have done it and worked very hard at it. I’ve learned that love is enduring. Bob’s kindness, generosity, honesty and integrity are so stunning that I am humbled,” said Maureen.
Some say Robert and Maureen’s life journey left the audience with a new perspective on everyday life.
“I felt honored, as a professor of English and writing, to share the Paulsons and their story with our SHU community. If anyone embodies courage and living a life of meaning and purpose, Robert and Maureen sure do,” said Kilgallen. “In spite of ALS, which confines Bob physically and Maureen emotionally, the two use their voices to inspire and empower others within the world, whether through their disability activism, social justice work, legal expertise or the simple sharing of their most profound story.”
