As a child, Jessica Szulerowski knew she had something, but it was never at the forefront of her mind, nor did it seem to really bother her. She knew she had inherited it from her Mum and that it involved yearly visits to see Dr. Korf in Boston, which always resulted in a new toy from the big toy store.
As Jessica grew older, she began to have a better understanding of her condition, and wanted others to know about it too. She started by talking about NF to her classmates so they could also learn and ask questions.
Jessica was diagnosed with a brain stem tumour when she was just 16, resulting in surgery which removed 80% of the tumour. After the surgery, Jessica wanted to be able to go back to school and not let the fact that she would be going through radiation treatment get in her way.
Missing just two days of schools during the entire treatment process, her classmates clapped and cheered when she was called up to the office to be taken to her final radiation appointment.
Drama has been a lifelong passion for Jessica. It was her motivation for not letting her treatment get in the way of her school life. Her drama teacher’s motto was "no excuses", although she said if anyone had an excuse, it would be Jessica.
After one of Jessica’s appointments, she handed her hospital bracelet to her teacher and said, "here’s my excuse note". Her teacher laughed and told the class that they would only be excused from being late if they too had a hospital bracelet.
As a result of her NF, Jessica has learning disabilities and is also on the spectrum for Asperger's. This has always made it difficult for her to fit in as she was growing up and continues to be challenging as an adult.
It has also made it hard for her to find work even though she has a BA in English Literature. Jessica feels that because of her learning disabilities, a lot of workplaces don’t want to give her the time and support when it comes to training.
Jessica has found a sense of purpose volunteering at Camp Quality, as she can empathise with a lot of the kids there, and also volunteers at one of the local primary schools. Her love of Disney movies has served her well in occupying her mind during her frequent MRIs.
She will often run through the entire Lion King movie in her head, from the sun rising to Simba roaring at the end while laying still during the test. She calls the part where they give her contrast, her “intermission”, but then she picks right back up where she left off when she goes back in.
Jessica has a love for writing and hopes that one day she can become a published children’s book author.
My NF journey might have a lot of ups and downs, but I keep marching on"