When Pauline was in her late thirties, she realized she was having eye issues. There were things that she was missing that other people seemed to be able to see, nothing a pair of glasses could not solve, she thought.
But after ten hours of tests at a specialist’s office in Boston, it became clear that glasses would not be able to correct the issues she was confronting. Pauline was diagnosed with retinitis pigmentosa, a genetic degenerative eye disease. Over time, cells in the retina break down, causing vision loss. For many, the condition makes it look like you are looking through a paper towel tube, seeing what is right in front of you, but nothing on the periphery. Over time, that field of view continues to get smaller.
With her diminished vision, Pauline had decided on her own to stop driving at night. Then her local ophthalmologist told her that it was no longer safe to even drive during the day.
Pauline says that at that point, she went into shock. There was a numbness that overtook her. She was unable to think or feel anything.
She took a leave of absence from her job.
Having two young children with school and other activities to get to, routine shopping, and other travel needs, she worried about how her family would manage with only her husband available to drive.
Ultimately, Pauline says, “I just tried to pretend that my vision was fine.”
While social workers from IN-SIGHT and Rhode Island State Services for the Blind reached out to her to offer solutions, she was just not ready. “I was not fully comprehending what was happening. I just kept telling myself to act normal.”
During those times when she could not do things because of her diminished vision, she would make excuses or blame it on clumsiness.
After spending three years trying to figure things out, she eventually returned to work part-time doing medical transcription.
As years went by and her vision continued to diminish, she knew she needed to do something more. “I wanted to be independent. I wanted to do things. I was tired of missing out,” she said.
Twenty years after first connecting with IN-SIGHT, she reached out again, looking for help with mobility. Given her lack of peripheral vision, she was concerned about safely getting from place to place.
Pauline connected with a mobility instructor who taught her the proper techniques for moving about, using the white cane as a tool to provide information that would keep her safe. “Initially, I was embarrassed to use a cane in public. Ultimately, I realized that it was a necessary tool if I wanted to remain independent.”
She also began attending IN-SIGHT’s support group meetings, Yoga classes, and the monthly Book Club, where she met others who were in a similar situation. Knowing she was not alone and being able to share what she had learned with others was a big help. Through a variety of free workshops, she learned new skills that helped build her confidence and independence.
Today, Pauline travels between family homes in Rhode Island and Florida, confidently navigating public transportation and airports on her own. She spends a lot of time doing things with friends and living the life that she wants.
This summer, she received a dog guide to further assist with her mobility needs. “Having a dog guide is a whole new experience for me, but it has led to even greater independence,” she says.
Pauline’s advice to those in the same place she was those years ago is to realize that you are not alone, take advantage of the help that is available, and most importantly, don’t worry about what other people think.
