A Teen Becomes a Teacher, Replacing Ignorance of Pediatric MS with the Facts
At 14 Contessa Torin wasn’t sure about her first choice of career, but she already had a Plan B: if MS isn’t cured by the time she’s ready to get a job, she’ll become a neuroscientist. (She used to say neurosurgeon, but she has a seizure disorder in addition to MS and wouldn’t want to seize in the OR.)
Contessa, of Hilton Head, S.C., had her first exacerbation at three, temporarily losing her vision and mobility, and was officially diagnosed at 10. Fate made her as much of a teacher as a student: science and society know even less about pediatric MS than about “regular” MS, so she and her family are helping fill the information void. They went with two staff members of the Mid Atlantic Chapter to Contessa’s school, and as a team worked out accommodations such as keeping a second set of books in class so Contessa doesn’t get fatigued carrying a backpack around.
“It was amazing, just having those two representatives there, how much more wiling the school was to accommodate her. They’ve never had any other children in her situation,” Contessa’s mother Deiha said.
Contessa often gets one of two equally unpleasant reactions when people learn she has MS: teasing or pity. Both improve when she can get people to listen to the facts she has absorbed from her doctors at the National Pediatric MS Center in Stony Brook, N.Y., one of the six Pediatric MS Centers of Excellence the Society supports.
“It’s not that bad,” she tells classmates. “I know it’s not contagious like kids at school think it is. It’s not a deadly disease. All I have to do is take a shot every day and take 8-10 pills a day. But that’s mostly it.”
The pills are for depression, which often accompanies MS. “We were very shocked” by the latest addition to Contessa’s collection of diagnoses, Deiha Torin said. “We didn’t realize that all this anger and everything was actually depression. That was really hard to swallow. But the more I talked to adults who had depression, I started to understand.”
While a disease-modifying drug keeps Contessa’s lesion activity down, connecting with other families living with MS keeps her spirits up. Deiha, Contessa, her father Marc and younger brother Winston have twice attended a family summer camp run by the Greater Delaware Valley Chapter, and she also has gone to other camps for children with disabilities that allowed her to get seriously into horseback riding. She loves Stephenie Meyer books and her dogs Ellie and Tippy, insists she’s serious about getting her grades up, and goes to Girl Scouts once a week.
Contessa captures the reality that the normal and the unusual will have to coexist in her life for some time to come when she says: “I can go on with my life perfectly. I haven’t lost my eyesight for a while but I do have seizures now and then — but everything’s fine now.”