Misfortune usually gives little warning. Jane Shober, for better or worse, has been warned. The first indication came while at summer camp about a year and a half ago. Running through a dark forest toward a lake for a late-night swim, Shober realized she couldn't see the trees.
"I know there are trees," she remembers saying to herself, "but I don't know where they are. And where did everyone go?"
- Photo by Cathrine L. Walters
- Doctors diagnosed Hellgate senior Jane Shober with a rare genetic, degenerative and so far incurable eye disease that can leave its victims completely blind. The condition inspired her to organize this Saturday’s “Dining in Darkness” event to raise funds and awareness about the disease.
Soon after, Shober visited an optometrist for a new pair of glasses, but was told her vision couldn't be corrected. Within two weeks she found herself visiting a specialist in California who diagnosed her with retinitis pigmentosa, commonly known as RP, a rare genetic, degenerative and so far incurable eye disease that can leave its victims completely blind. Night vision tends to go first.
"Each case of RP progresses differently," Shober explains, "so there's no way for the doctor to say, 'At this point in your life, you'll probably be able to see this much.' In some cases, it will progress for two years and then stop, and then maybe not progress for 10 years. It's different in each individual case."
When you meet Shober, a senior at Hellgate High School, you can't tell that the ebullient and eloquent 18-year-old is gradually going blind. But she tells of her frustrations, especially in low light.
"I run into walls. I trip over park benches," she says. "Basically there's no definition."
And she describes her deteriorating sight even in full light.
"When I'm staring at someone's face," she explains, "the right half of their face is kind of blurred out...If I were looking at a plain blue piece of paper, it would just be fuzz. And when I'm looking at a word, part of the word disappears. Like 'there.' If I'm looking at the word 'there,' I might think it just says 'the,' because I can't see the 'r' and the 'e.' I'm not aware of them being there. They would look just like the background of it."
Shober may be losing her sight, but not necessarily her vision. As the centerpiece of her senior project at Hellgate, Shober has organized a "Dining in Darkness" event for Saturday, March 20, at Missoula's DoubleTree Hotel. As many as 400 people will spend the evening blindfolded. Attendees will eat, drink, listen to live music, and participate in a blind auction. The proceeds from the $30/plate dinner will be donated to the Foundation Fighting Blindness for research to prevent, treat and cure retinal degenerative diseases, and to Missoula County Public Schools to buy classroom technology for low-vision or blind students. Shober says 250 people have already purchased tickets, available at Rockin Rudy's.
Shober designed the event to raise money for and awareness about blindness, but also to raise sensory awareness.
"It's quite an experience [losing a sense]," Shober says. "It really enhances all of the other senses. We thought the dinner might be a cool fundraising idea, so we put it into motion. It's gotten a lot bigger than we thought it would be."
The DoubleTree agreed to donate the food, staff and ballroom space for the event. General Manager Dan Carlino says he was receptive to the idea in part because his own daughter sustained a serious eye injury a couple years ago, making him sensitive to vision troubles.
The other component of Shober's senior project is learning Braille, a task her instructor, Kathy Sehorn, says Shober has embraced.
"Most kids take between three and four years to get through the Braille program," Sehorn says, "but she has just hit it head-on and she's almost through the entire program. She doesn't know it perfectly, but she's probably been the most enthusiastic. She's really worked hard to learn Braille even though she doesn't need it at this time."
Shober's other teachers offer equally effusive descriptions of Shober's maturity and courage in confronting RP. Her English teacher, Shaun Gant, describes her as "unflappable."
"She's got this big smile for the whole world," Gant says, "and she's so beautiful and so confident that you never guess that she has this condition."
One sign, however, may be the technology Shober must now use in the classroom. In her math class, for example, a camera sends video of the classroom's whiteboard to a computer screen on her desk. In her science class, another device magnifies papers and displays them on a monitor.
"I was really grateful to be involved with the meetings that have gone on about how to address her classroom needs," Gant says, "because it gave me a lot of insight into knowing that there are kids all the time that I'm teaching that have things going on that I can't see. And so Jane taught me that."
Shober admits preparing for blindness has been trying, but she also says it has fostered personal growth.
"Before I never really had anything in my life that was really big, or something that I worked so hard for," she says. "It's definitely changed my perspective on a lot of things in life."
She adds: "It's really opened my eyes."