By Mona Lisa Tucker/south news editor
Doctors said if she lived to be 33, she wouldn’t be walking, talking, doing things for herself or having children, South student Suzette Tiggs-Simms said.
She has a missing link between the bottom portion of her cerebellum and upper spine, which has drastically affected her equilibrium since she was a child. The formal diagnosis is spinocerebellar ataxia disorder.
Although she is now 47, many obstacles confront her daily.
“The number one thing is the balance,” she said. “Walking is truly a chore for me. The main difficulty is trying to walk a straight path. It may appear that I can walk straight for a minute. Then, all of a sudden, I’m swinging off to the left or the right.
“I stumble more than actually fall. I usually catch myself or someone catches me, but there have been times I had to go into emergency because I twisted an arm or ankle or something like that.”
Simms also has problems with her sight.
“It wasn’t until actually this year that I really, truly understand what it is,” she said. “My eyes do not work together with my brain. My eyes do what they want to do, and they don’t do it together.”
Her current therapist and eye specialist are working together trying to improve the quality of her sight.
At the college, she doesn’t need glasses to write because she is near-sighted but uses special visionary tools to see the board, she said. Also, she has a note taker.
“Then when it comes to studying, I record the lessons because I cannot remember everything that’s been told to me,” she said.
Simms forgets things quickly because her brain is deteriorating more rapidly than a normal person’s. Therefore, she retains only certain types of information.
“I always tell people if you got a secret, I can keep that secret for you because by the time you tell me and we depart five minutes from each other, I pretty much forget what you said,” she said.
Her husband Mark Simms said when they first met, Suzette told him about her condition, but he didn’t think much about it because she seemed to be functioning like an average person.
“I didn’t realize until later when I began to see how she was walking and see how she interacted with darkness,” he said. “The darkness completely and totally disorients her. She can’t get her bearings, at will, in the dark.”
When he noticed those challenges, he became more supportive, he said.
“Also for her, every day is a day of pain, back pains, different pains like that,” he said. “A lot of symptoms, if she really didn’t tell you that she was having painful days, you really wouldn’t know.
“Some people use it as a means of getting sympathy and pity. She never uses it like that.”
There is no cure for this disorder, but Mark is thankful that Suzette doesn’t let the prognosis stop her from going to school and completing other daily tasks.
Their eldest daughter Byanca Tiggs said she became frightened when her mother turned 33 because most people with the disorder die around that age. Byanca was only 14.
“I freaked out a little bit around that time. I think that was an emotional time because the fear of losing your mother at a young age,” she said.
“But I remember her just saying, ‘I’ll be all right. Don’t worry about me, God got more for me.”’
Tiggs’ fear has subsided, and she is proud of her mother and her accomplishments, she said.
