Through a Facebook reader of this column, I learned about 62-year-old Susan Addison of Chattanooga, Tennessee. Now retired, she was a special education teacher for more than 30 years of children with disabilities and later a training program developer for a State of Tennessee early intervention program that served children with disabilities under age 3.
“It was hard for me to go from being the person helping people with disabilities find help to being the disabled person in need of that help,” said Addison.
Her personal story of disability began in her 20s while earning a masters degree in special education at the University of Georgia. She had then an occasional “itchy nerve pain” in her legs and awkwardness in walking, including one foot that would kick the ankle of her other foot to the point of cuts developing.
“I wasn’t diagnosed with (a form of) multiple sclerosis until my mid-50s, even though I’d had difficulties from my 20s on,” she said. According to the National Institutes of Health, multiple sclerosis (MS) is a central nervous system disease ranging in severity from benign to devastating when “communication between the brain and other parts of the body is disrupted.”
By the time of her diagnosis in 2005, Addison was experiencing extreme fatigue, a loss of control of bodily movements, thinking difficulties, balance issues when walking, short-term memory problems, nerve pain and limb weakness, double vision, and intolerance toward exercise. Back then, she walked with a cane. She had been able to keep working because of co-workers who helped with paperwork and drove her to meetings. Doctor-ordered MRIs eventually confirmed the presence of hundreds of MS-caused brain lesions that had been affecting her cognitive abilities.
“It was very, very difficult for me to resign from my job,” she said. “And it still is difficult. That work was my passion in life.” Today, Addison doesn’t drive a car, and outside the home uses a wheelchair to get around.
She advised people recently diagnosed: “If you are young, your disability should be much easier (to cope with) than someone like me diagnosed late in life. When I was young, I didn’t participate in any treatment. If you are young and think you have MS, aggressively pursue a diagnose and participate in treatment. There are many treatment options. Hopefully, you will never acquire the level of disability I have.”