Limited sight, full life: Visual impairment fails to stop CMU student from accomplishing her goals
While most children are still struggling through potty training at 3 years old, Plymouth junior Casey Boyle faced a bigger obstacle — chemotherapy.
Problems for Boyle began when her fontanelle — the area of cartilage which hardens to join bones in the skull, also known as an an infant’s ’soft spot’ on the top of the head – failed to properly close. An MRI showed why, part of her skull failed to close because of a tumor on her optic nerve. This was present due to a hereditary disorder called neurofibromatosis, a trait passed down from her mother, Megan Skiba.
“I never knew I had it until she was diagnosed with it,” Skiba said. “There’s different ways of telling someone has it, some people never develop severe symptoms like Casey did. (Casey’s diagnosis) was a surprise because I never even heard of it before.”
Boyle developed NF1, a smaller severity of neurofibromatosis. Doctors attempted to shrink the tumor with low doses of chemotherapy when Boyle was just 3 years old.
Chemotherapy sessions were once a week for about a year and a half. Boyle lost her hair, became more prone to infections and illness and couldn’t attend school when her blood counts were too low.
Boyle’s blood sugar was checked before every session. If her level was too low she could not receive treatment for the week, which happened only once.
She remembers ‘bits and pieces’ of her weekly chemotherapy treatments.
“I would sit in the hospital, watch “Blues Clues” or “Barney,” some kids show at the time and get medicine pumped into me for an hour or two, then I’d be free to go home,” Boyle said. “I’m sure it was hard on my family to see me go through (chemotherapy) at such a young age.”
Seeing her daughter go through chemotherapy as a toddler was a challenge for Skiba.
“It was pretty difficult,” Skiba said. “We kept her in pre-school one more year so we could get her up to date with kids her age.”
Doctors couldn’t fully shrink the tumor due to its location, leaving a quarter-size chunk of the tumor on Boyle’s optic nerve. Although the tumor has made Boyle visually impaired, surgically removing the entire tumor would leave her completely blind, Skiba said.
Perfect vision for a person is 20/20. Boyle sees 20/400 in her right eye and 20/500 in her left.
“I have to be 20 feet away to see the same thing that someone can see 400 feet away, so a lot of things are very difficult,” Boyle said.
Post-chemotherapy life consisted of Boyle undergoing several MRIs in three to six month intervals for the first few years, followed by yearly check-ups on the tumor. Doctors determined Boyle’s tumor wouldn’t grow more once she was a teenager, ending her long cycle of appointments.
Skiba described her daughter as quiet and friendly, but very independent growing up despite her health.
“She always wanted to learn new things,” Skiba said. “She’s never let anything stop her with the disability. She’s willing to do and try anything anyone else could do.”
A major obstacle Boyle faced growing up was school.
Boyle was bullied at school for being different. On top of impairing her vision, Boyle said her tumor pushed on other parts of her brain, causing her to be heavier than other kids.
Her peers still poked fun at her vision, but not to her face.
“Kids would whisper behind my back and think just because I couldn’t see them, I couldn’t hear them,” Boyle said. “Because my eyes are bad they didn’t realize I have better hearing.”
Skiba knew her daughter was being bullied and not sharing everything that was happening.
“It was obvious there were some issues with it, but she always kept a positive attitude about things,” Skiba said. “It didn’t seem like she really let too much get to her, but I know it was difficult.”
The worse case came from her father’s girlfriend one evening while cleaning the kitchen.
“I was trying to find something and she said ’stop pretending, I know you can see that’,” Boyle said. “All I said to her was ‘I’m glad you can tell me what I can and can’t see.’ My dad told me ‘you need to apologize to her or you’re not allowed to come back (here),’ so I basically didn’t come back. I still talk to him, but our relationship is not the best.”
Despite negativity in her life, Boyle found positives at Winston Churchill High School in Livonia. She was part of her school’s Gay Alliance Club and participated in choir and drama club. She also appeared in six musicals.
Boyle was part of her school’s productions of “Grease,” “Seussical,” “Rent” and “Little Shop of Horrors.”
“(Music is) something she’s been interested in since she was as young as I can remember,” Skiba said.
“It always seemed logical to me that she would be interested in some sort of music, chorus, musicals or plays in high school.”
Although she struggled at times to find her place on stage, Boyle said the biggest challenge was learning the large arsenal of dance moves for each show.
Her vision became an obstacle when learning new moves which were added during rehearsals leading up to the performance.
“I would stay after and work one on one with someone who helped me get the dance moves down,” Boyle said. “When it came to performances the hardest part was always making sure I was in the right spot at the right time. I just went to my place behind stage a song before I knew I needed to be (on stage).”
After graduating in 2014, Boyle chose to attend Central Michigan University to be far enough away from home to be on her own, but close enough to be home when she needed to be.
Skiba said she values the importance of a college education, but knew it would be difficult having her daughter two hours away.
“Even now it’s nerve-wrecking knowing she’s away and it is harder for her to get around,” Skiba said. “I think she’s acclimated pretty well (at CMU).”
Adjusting to CMU was a new challenge for Boyle. She spent her freshman year mainly in her room in Barnes Hall. She said she told herself ‘this sucks, I don’t have any friends and I’m not involved. I can’t do this anymore.’
Boyle has since come out of her shell, making friends who she said can deal with her sense of humor.
“I’m a very sarcastic person, so we joke around a lot,” Boyle said. “I don’t think they realize how much I appreciate them, but I do.”
Boyle is majoring in recreation with a double minor in hospitality and leadership. She hopes to graduate sometime in 2020 and plans to work as either a concert promoter or an event planner for a resort.
She said she feels her school load is larger than the typical CMU student, spending eight-to-10 hours a week studying, normally taking her longer to read textbooks, — all electronic — compared to the typical student.
“I rely all on what the professor says when I’m taking notes in class,” Boyle said. “No matter how close I sit to the board it doesn’t matter, I can’t read the notes.”
Boyle became involved on campus by becoming a member of the David Garcia Project, a group of students promoting empathy instead of sympathy for people with disabilities through different simulations.
Simulations depend on the disability. A simulation for schizophrenia would have participants listen to audio from YouTube created in collaboration with people who have schizophrenia to include voices and noises they have heard during an episode while taking a quiz. This simulates what it’s like for people with the disorder to concentrate.
The group also conducts simulations for vision impairment and physical disabilities.
Boyle discovered the group during Be my Neighbor day, an event put on by the Mary Ellen Brandell Volunteer Center on campus, and fell in love with the group after a simulation.
There, she is a facilitator for simulations to help show people what living with a disability is like.
Although she hasn’t spent much time one-on-one with Boyle, first year student coordinator Kelsey Bogrow has heard nothing but positive things about Boyle.
“I know she’s always willing to sign up for sessions and has really good communication,” Bogrow said. “I hear a lot of people (say) she does really good during the sessions. She’s been nominated for the star facilitator award a few times, it seems like other people tend to enjoy her.”
Having someone with Boyle’s impairment brings a new perspective to simulations, Bogrow said.
“If you have a disability it makes (facilitating) a lot easier because you have personal experience to give,” Bogrow said. “I know when we have participants with disabilities it turns out nicely because they get to give firsthand experience and input that someone, like me, who’s able-bodied, can’t give even though I’ve been through the simulations myself.”
Boyle’s journey has been anything but easy, but no matter what her next challenge will be she will have the support of a very proud mother.
“She sets out to do something and she accomplishes it,” Skiba said. “I’m excited to see where her life goes even after she graduates because I know she can do anything she sets her mind to.”
