Marissa Miara, who is the Experiential Coordinator in the Office of Experiential Education at MBKU’s College of Pharmacy, had a somewhat unusual path to employment at the University, in the sense that it went through Southern California College of Optometry – not as a staff member, but as a patient.
For more than a few years, she had been struggling with inexplicable vision loss, bewildered by both the physical ailment itself and the inability to understand the source of it. The impact it was having on her life was made worse by the emotional toll of searching for a diagnosis but always coming up short.
A LIFE-ALTERING DIAGNOSIS
This changed soon after she was referred to the Low Vision clinic at Ketchum Health for the first time. During one of Marissa’s visits, her optometrist mentioned that there was an organization providing free genetic testing for low vision patients, and within months she received a phone call from a genetic counselor who was able to confirm for her the exact, extremely rare genetic mutation which was causing her vision loss. While the condition is not curable, having the information changed her life. “When you finally have a name for it, it brings so much relief,” says Marissa. “I had a starting point to move forward. It was a huge gift to have an understanding of what was going on, and an opportunity to start my journey from there.”
The journey was daunting. Putting herself back into the workplace after having suffered from significant vision loss required Marissa to figure out how to reinvent the skills she knew she had in a different and challenging context. That’s when she came across a job posting for a position at MBKU’s College of Pharmacy. “I thought, ‘I have to have this job,’” says Marissa. “I had been given such a gift going through Ketchum Health in the form of that starting point for my diagnosis that I really felt like it would be a full-circle moment for me to work at MBKU and give back.” Marissa went through the hiring process with no small amount of trepidation, but it shouldn’t be a surprise that MBKU had everything she needed to accommodate her low vision while interviewing her.
A GIFT THAT KEEPS GIVING
And when she got the job, they had everything she needed to help her do it well. “The process was so easy,” says Marissa. “I was in a place where they had a program that understood the kind of needs that a person with visual impairments has, and because of the Low Vision clinic, I always had people to talk to and ask questions. And then getting set up in the workplace and in my life with assistive and adaptive technology was very smooth, again, because of the people there to help me determine what was necessary given my limitations and different needs.”
What is perhaps most important to Marissa, in addition to the fact that she’s been able to thrive in her role as the Experiential Coordinator in the College of Pharmacy, is that she has also been given a very sincere opportunity to give back to the University, just as she had originally hoped. She’s been invited to classes in SCCO to speak from the heart about the patient experience, to give future optometrists a living example of how low vision affects people.
“They may never experience a patient with a rare genetic disease,” says Marissa. “But the process of finding mine was through a routine optometric examination at LensCrafters. So they may very well be instrumental in helping someone come to a diagnosis who doesn’t even at that present time know they have a problem. But after that little starting point, I eventually got a diagnosis because that first person began investigating. Sharing my patient perspective has been a very therapeutic part of my personal journey, because I’m able to illustrate the impact that optometry and ophthalmology had in helping me, after getting news that was very devastating, regain my voice and my life.”