On Dec. 12, 2013, Christine Malley received some of the best and worst news of her life. Around noon she got word that she became an aunt to a beautiful little niece. Malley was elated and planned to go meet the baby girl right after a quick doctor’s appointment that afternoon.
But the doctors had other plans for her.
A few months earlier, Malley woke up with a random pain in her neck. Ah, she probably just slept on it funny. It would be gone in a few days, she figured. However, an Advil-filled week later it wasn’t any better and her vision sporadically went blurry.
“I’d have to close my eyes and shake my head and that would clear it up,” Malley recalls. “But then it would happen again.”
Doctors tested her for this, prescribed something for that. It wasn’t clear what she was dealing with, but it kept getting worse. Blurry spells turned into temporary blackouts, sometimes while driving. She battled chronic headaches and eventually the left side of her mouth went numb. By Thanksgiving, Malley had lost her senses of taste and smell. Despite the unknowns, months of pain, and “all sorts of weirdness,” Malley stayed positive. She never gets sick. This would pass.
In early December her left eye turned inward, so she finally booked an appointment with an eye doc.
“I showed that to her and she freaked out,” says Malley, now 29.
Right away the doctor told her she had pseudotumor cerebri — a rare neurological disorder Malley says affects one in every 100,000 people. The doctor sent her to Regions Hospital where a spinal tap and MRI confirmed the diagnosis. By this point, she only had about 30 percent of her vision left.
“They told me pretty much my vision would not be getting any better,” Malley recalls. “That’s the first time I heard, ‘You’re not OK.’”
Even with the life-changing news, the bubbly Minneapolis woman cracked jokes with the doctors and her parents who were at her side. “I am very good at hiding my feelings from family,” she says. “I felt like I needed to be strong.”
The gravity of her situation didn’t really hit until her parents went home for the night. Alone in the hospital, she started playing with her phone using voice commands. Malley tried repeatedly to update her Facebook status, but Siri couldn’t quite get it right.
“Any time I would say the words, ‘I’m probably going to be blind’ or ‘this is going to be my new reality’ I would start crying. I couldn’t do it,” she recalls.
Last Saturday was the second anniversary of the day Malley learned she was going blind. And her niece’s second birthday. It wasn’t a tear-free day she admits, giggling as she does when the conversation turns solemn. But she’s come a long way since her world went dark.
She pushed herself through a nine-month blindness training program, where she learned to live independently enough to move out of her parents’ place in Blaine. Since graduating in February, Malley moved to the Loring Park area and enrolled at Minneapolis Community and Technical College. She’s chasing a forensic science degree.
“When I lost my sight I didn’t think I could do anything,” she says. “I thought I’d be living with my parents for the rest of my life.”
Just months after learning to use her cane, Malley challenged herself to take a solo trip to Phoenix to visit friends. She’s always been a homebody, but since losing her sight she gets anxious about getting around in unfamiliar places.
“I did it,” she says proudly. “It was not my favorite thing, because I don’t like asking people for help to begin with. That’s been a struggle with this whole thing, I have to constantly ask people for help.”
She already has another trip booked in January when she flies to Florida on health insurer Cigna’s dime for a 5K at Walt Disney World. By admission, Malley has never been a marathon runner. She’s not worried about walking the distance, but sees the trip and the ribbon at the end as one more achievement since losing her sight.
“It’s going to feel so awesome once I cross that finish line, knowing that I completed something that I wouldn’t have done a year ago,” Malley says.