NEVER GIVE UP
It's the motto that many patients with NF2 live life by. This certainly holds true for the Viitanen family. Twenty-four year old Jessica and 20 year old Elissa of Delta, B.C., both have NF2 which they inherited from their mother Kaarina.
Since they had a known family history, the doctors knew to check the girls with MRIs, and sadly they were both diagnosed as children. “Some people have assumed my sister having NF2 made it easier to deal with because we could relate to each other’s experiences and we wouldn’t have to deal with it alone,” tells Jessica. Jessica explains that it is very difficult knowing her baby sister has tumours and will end up deaf one day. “I’d do anything to bear that burden for her.”
Jessica and Elissa’s mother, Kaarina, also lived with NF2. She passed away when Jessica and Elissa were small children, ten days after celebrating her thirtieth birthday. “She had dozens of tumours all over her spine and a big one in her brain that eventually killed her,” tells Jessica. She didn’t let that stop her from living her life though. Despite being fully deaf, Kaarina still played the organ at church. She had a friend type the sermons on a laptop so she could follow along with the church service. The same person still types for Jessica and Elissa at church. Kaarina exchanged long letters with a close friend from the United States for many years. After she passed away, the letters were published into a short book which the girls can now look back on in memory of their mother. “One thing I noticed in the book was that she never mentioned NF2 and didn’t worry or complain about her situation,” tells Jessica. “Instead she wrote about all the good things in her life and the things that brought her joy, like Elissa and I.” She lived her life as a person who had NF2 but did not let the condition define how she lived her life.
Jessica, who recently finished schooling for applied business technology, explains the challenges of living with a hearing impairment. “It’s put up a barrier between me and the rest of the world,” tells Jessica. “The last job interview I had lasted less than two minutes. After the employer learned that I couldn’t hear, he refused to write down what he wanted to say and wasn’t willing to speak a little louder,” tells Jessica. She explains how difficult it is to have self-confidence in moving ahead in life and gaining employment when so many people are not willing to put in the effort or be accepting of differences. Since NF2 patients tend to lose their hearing gradually, the change from the hearing world to the deaf world happens slowly. “For me, this means I still think like a hearing person, when in most situations I might as well be deaf because I can never understand anything,” tells Jessica. Jessica, who is severely hard-of-hearing, explains that it would almost be easier to be completely deaf. “Of course I’d miss the sounds of rain falling on the roof, snow crunching under my feet, and birds tweeting in the spring.”
Jessica loves to renovate and build things. “I’d love to go to Mexico with a group one day to help build small houses or classrooms for less fortunate communities,” says Jessica. Elissa recently finished culinary school and is working as a baker in Vancouver. Jessica and Elissa are carrying on their mother’s legacy and will never give up! •