Like the funky music videos he produces through the movements of his eyes, Kip Jackson’s sense of humor is outrageous — in a good way.
It always was, says his sister Julie Nichols, recalling times when she lived away from Arkansas, their home state. Kip, 11 years younger, came to visit. He kept her up half the night, she said, with his funny stories, and quip after quip. “I would laugh until I cried. I hurt I laughed so hard.” Life is different now for Kip and Robin, his wife of seven years. The laughter continues — but with a new purpose: to help and heal in ways they may not have imagined before.
“We try to keep it light,” Robin said. That they do, though Kip, 43, has been living with amyotrophic lateral sclerosis (ALS) for four years. Signs of ALS, the fatal illness commonly known as Lou Gehrig’s disease, surfaced in November 2011 when Kip experienced weakness in the legs and multiple falls. The formal diagnosis came nearly a year later, while Kip was still working as a data engineer at a telecommunications company.
Now he needs a wheelchair to get around, a ventilator, trach and feeding tube. He can no longer speak or use his hands. His facial expressions are declining.
Fortunately, Kip has powerful tools for bringing out his equally sharp spirit and wit. He uses an eye-controlled Tobii Dynavox I-15 device to communicate, choosing the man’s voice with the southern accent for his delivery. A separate device, the PCEye Go, provides the easy computer accessibility Kip needs for his creative pursuits. The technology lets him get things done, have fun and be who he is. “Kip and the device are one,” Robin said.
Kip and Robin have developed their own silent language and read each other well. But the device is a necessity, filling in many blanks that crop up in everyday communication.
“Without it, I would drive her absolutely crazy,” Kip said through the I-15 when he addressed the Arkansas Society for Respiratory Care convention.
Kip wanted his audience to understand that ALS is a journey he and his wife are traveling together. “I have the diagnosis, but we both have it.”
The presence of others means a lot, Robin told us. “We’re surrounded by friends and family who provide a great deal of support.”
The Jacksons feel blessed to have Amy Wilson, Kip’s weekday caregiver who indulges his keen interest in football and his sarcasm. “She tolerates me and puts up with my smart-aleck antics,” he said.
“We still have date night... We just have it at home.”
Robin, a behavioral health specialist for high school students, says she tries not to blur the lines between being a spouse and a caregiver when it’s just her and Kip at home. “We still have date night,” she said. “We just have it at home.” It’s nice that with the I-15 he can take the lead in the conversation, queue up a movie or change TV channels.
Julie, meanwhile, has always felt like a second mom to her brother. She juggles her schedule so she can get Kip ready for bed Friday and Saturday nights to give Robin a break. While working two jobs, Julie also looks after Kip on Wednesday evenings and Sunday afternoons. She loves that his high school buddies still visit. It cracks her up that they watch football reruns—yes, reruns. Kip’s I-15 helps preserve their camaraderie. “I don’t know how they could communicate when they come and sit with him in the living room,” she said, or get the full effect of his frequent quips. “Some are funny. Some are funnier.”
The device is practical for everyone, Julie said. She appreciated its built-in alarm when Kip needed extra care through the night. “When you’re tired, you fall into a hard sleep. Kip would hit that alarm and wake us up.”
Kip took his time when shopping for his device, noting that the visual content on many similar devices was too animated for his tastes.
“The I-15 has the best specs out there,” he said. “I liked the professional design.” The Communicator pageset he uses is super adaptable, he said. Kip streamlined its onscreen keyboard to meet his needs by enlarging the space bar and other frequently used buttons to improve accuracy while his eyes do the typing.
music project. Kip makes song videos using the PCEye Go* in combination with a digital music workstation and various types of music software. He uses the I-15 for the narration. The message tells you that he approaches his situation from a peaceful place.
In his optimistic style, Kip likes to say he “lives with” ALS instead of that he “has” ALS. His sometimes zany Kip's Krusader's Facebook page has a feel-good effect. There are photos of Kip and Robin having fun together and Kip doing magic tricks with a boy from the neighborhood. Kip’s posts on pop culture are short, sweet and sassy. He also promotes ALS awareness activities and offers encouragement in facing adversity, as he does in this post:
“Chances are that this disease will take my smile. If that does happen, know that on the inside I am full of life - always will be.”