“I had to get her ready for bed and pick her up if she had go to the bathroom. When she fell asleep, I got to do my homework.”
MONROE COUNTY, Pa. — In the mornings, Olivia Jackson goes to Pocono Mountain West High School, where she is a senior. In the afternoons, the 17-year-old Tobyhanna student packs her books and rides a bus to Monroe Career and Technical Institute in Bartonsville, where she studies business administration with a marketing track.
That’s the easiest part of her journey.
In 2012, Jackson’s mom, Denise, was diagnosed with ALS — amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. It involves the nerve cells responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking and talking. The disease is progressive, meaning the symptoms get worse over time.
And it did.
Jackson’s mom died in 2015 when Jackson was 15.
“It’s not like if she died in a car crash where we were not expecting it,” she said. “I knew what the effects of ALS were, so I knew it would happen. I was already in the process of adjusting when her decline happened.”
Jackson’s mother was born in Jamaica and came to the United States in the 1990s. In 2012, at the age of 39, Denise was diagnosed with ALS. Jackson described her as smart, beautiful, kind and caring.
After a few months, she was unable to use her hands and couldn’t walk without a walker, and ultimately, she couldn’t walk at all anymore.
“After a year, her speech began declining so she couldn’t speak anymore,” Jackson said. “Sometimes I would be her translator. Because I was around her all the time, I could understand from the sound she made what she meant.”
There was a chart with the ABC’s and numbers for those times when communicating became impossible.
Jackson became one of her mother’s primary caretakers, at the age of 14.
“When I would come home from school, I would have to feed her through her feeding tube,” she said. “I had to get her ready for bed and pick her up if she had go to the bathroom. When she fell asleep, I got to do my homework.”
Sometimes that didn’t happen until midnight.
“I had to pick her up and put her into the shower and bathe her,” Jackson said. “When it got bad, I had to put her on the commode and give her a sponge bath.”
Still, Jackson found a way to cope.
“It was my mom, so I tried to be positive about it and tried not to complain about it,” she said. “But it was stressful because I had to get work done in school. I knew once I was done with school, I knew I would have to go home and do more work.”
Jackson has a 9-year-old brother. Both live with their dad. He works constantly in New York City and wasn’t able to provide the same support his wife needed when she was sick.
Through it all, Jackson maintained her honor roll and national technical honor society status.
MCTI Academic Integration Specialist Maria Hafler said Jackson excels academically in all her classes.
“She balanced her life doing activities at Pocono Mountain West and her activities here, and maintained national honor roll status when her mom was sick by balancing life,” Hafler said. “She’s going to excel now because she knows how to do that.”
Jackson is a regional DECA champion. DECA is an organization that prepares emerging leaders and entrepreneurs for careers in marketing, finance and management.
She hopes to go to the DECA State Development Conference in Hershey in February and the International Career and Development Conference in Atlanta in April. To get there, she’ll need to raise funds; $325 for the state conference and $1,400 for the national conference. Anyone wishing to donate to her trip can contact Pattie LeCompte at 570-629-2001, extension 2522.
Howard Frank is a reporter for the Stroudsburg (Pa.) Pocono Record.