A new vision: Despite health diagnosis, Altoona student charts path forward

ALTOONA, Pa. — Her personal and professional horizons are expanding, but her ability to see is literally shrinking.

Jen Parrish is going blind.

Parrish first came to Penn State Altoona right out of high school in 1994. At first, she planned to become a teacher, then quickly shifted into criminal justice, harboring ambitions of someday working for the FBI.

But in 1996, at just 19, Parrish was diagnosed with retinitis pigmentosa, a rare genetic and progressive disorder that causes cells in the retina to break down. She was told she would be blind by age 60.

At the time, nothing in her day-to-day life would change, but the diagnosis effectively ended Parrish's dream of a career in law enforcement.

“I felt so rudderless,” she said. “Going to classes didn't seem to matter anymore. The profession I was invested in and had such a clear picture of just vanished. There was nothing left to fill that void.”

Parrish became depressed. When her grades dropped, she dropped out — and she packed away any emotion she had about her diagnosis and broken career goals.

Among the symptoms Parrish was told to expect in the coming years were loss of peripheral vision, loss of color and central vision, and night blindness, which she was already slightly experiencing. But with no legal restrictions on her, she could still drive and work, so she found a job as a teller at a local bank. She worked there for about eight years, then at a credit union for another six.  

Parrish said at first, it was just something that would pay the bills, but she unexpectedly found it fulfilling. “I had the personality to work with people, and I loved working with money. I was good at it, and I was actually very happy doing that job,” she said.

Parrish got married in 2000. She had a daughter in 2005. She lived her life.

Then, in her mid-30s, night blindness began to affect her ability to drive. Although there were still no legal constraints, Parrish made the decision to stop driving, instead relying on her parents and then-husband for rides to and from work, appointments, and for errands.  

That box she’d stuffed her emotions into about her disease began to crumble. Because now, symptoms were impacting her way of life. Having to rely on others, needing accommodations — all of it made her diagnosis real. And she had to start dealing with the things she had pushed down for such a long time.

But it was a painful and overwhelming struggle. Parrish was trying to accept her disease, accept and manage her current situation, and accept and prepare for what was to come.

“I was a bitter, angry person for quite some time,” Parrish said. “I became someone I didn't want my daughter to have as a role model. She needed a strong person to look up to, and I realized I was the only one I could count on to be that for her.”

Parrish said that realization was a turning point.

She started therapy. She started the hard work, a process she said lasted several years.

“Acceptance came in waves,” Parrish said. “I went through the stages of grief because it really was a death. It was the death of a part of myself.”

And there were more parts to be lost. In 2013, due to a drop in peripheral vision, Parrish’s driver's license was legally taken. In 2014, no longer confident in her ability to work with large sums of money, coupled with painful eye strain, she felt it best to leave the job she had come to love. 

It was a hard, dark time for her filled with depression and loneliness. It was an adjustment she could never quite make.  

Then, in 2021, Parrish decided to leave her marriage of 21 years.

“There was no other way around it,” she said. “Even visually impaired, unemployed, and unable to drive, it was just something I had to do.”

So, she found a small house for her and her daughter in Altoona with a little yard and no stairs.

She connected with the Bureau of Blindness and Visual Services (BBVS). Organization employees helped her get safely set up in her new home and made sure she knew all of the services and agencies available to her. They gave her trainings on how to navigate sideways with her cane and how to travel safely and efficiently on the bus.

Which was perfect, because her new home was close to public transportation and just half a mile from Penn State Altoona. Parrish could ride the bus or walk to campus for her classes.

Yes, that’s correct. Parrish returned to Penn State Altoona in the fall of 2023, this time as a human development and family studies (HDFS) major.

The BBVS offers a career assessment as part of its programming. Based on her results, Parrish’s case workers suggested she consider their profession. Parrish reflected on the things they had done to help her acclimate to her new way of life. The more she thought about it, the more she could see herself being the one to help others in similar situations.  

“I've always trusted my gut, and it was telling me to go,” she said. “The decision felt so right, and I had this settled feeling, like I was right where I was supposed to be.”

Of course, returning to college, now as an adult learner and a blind person, was frightening. She worried about navigating the campus and the buildings. She worried about how she would be perceived and about being accepted by other students and faculty. She worried about needing and receiving accommodations.

But Parrish said she has yet to come across anyone in her program or on the campus who hasn’t been kind and welcoming. Student Disability Resources staff made sure any literal obstacles were removed and every technology available was put to use for her class and course work. Parrish said her professors have always been helpful and willing to ease any burden or barrier.

“It's just been the greatest experience,” Parrish said. “The HDFS program has been challenging but in the best way. It really has been the most natural fit for me.”

Lauren Jacobson is a professor in the HDFS program. Among her favorite parts of teaching is meeting students like Parrish who have had unique trajectories in achieving their goals.

“She is a real force of nature,” Jacobson said. “Her open-mindedness about what's possible for her and her willingness to pursue difficult opportunities serve as inspiration to the HDFS faculty and her fellow students.”

Jacobson has observed the ways Parrish allows her challenges to teach her about herself and bring unique perspectives to others facing difficulties. She’s seen the way Parrish combines compassion with expectation and motivation to help those who are struggling see a path forward and feel supported. 

“We never forget but are also never reminded of her disability,” Jacobson said. “We have all come to see it not as an obstacle but as one component of who she and something that contributes to her gifts as a student of human services.”

Parrish is on track to graduate in May. She plans to pursue a master’s degree in disability services and ultimately hopes to work in higher education supporting students with disabilities or in an administrative capacity bringing inclusion and equity to people from marginalized communities. 

But the brightness ahead of Parrish does not change the darkness of her ocular reality.  

A normal visual field is 120 degrees, meaning one can see objects within a 120-degree arc from the center of his or her focus. Currently, Parrish has less than five degrees — comparable to looking through a straw.

“If I line up what I want to look at, I can see it perfectly. But I also walk into walls sometimes, so there’s that,” Parrish joked.

As we all do, she has shed parts and versions of herself throughout her life and the stages of losing her sight. She’s been many variations of Jen Parrish. She is not who she once was, but she feels confident that she is now, finally, who she was meant to be.

“Sometimes we have to go through an incredible amount of hardship to really get to the heart of who we are. I’ve found that person, and she’s amazing,” Parrish said. “I’m so proud of her.”