When Pauline Proulx was in her late thirties, she realized she had eye issues. She was missing things that other people seemed to be able to see. Nothing a pair of glasses could not solve, she thought.
But after ten hours of testing 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 peering through a paper towel tube, seeing what is right in front of you but nothing on the periphery. Over time, that field of view gets smaller.
With her diminished vision, Pauline had decided on her own to stop driving at night. Then her local ophthalmologist told her that driving during the day was no longer safe.
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 and routine shopping and other travel needs, she worried about how her family would manage with only her husband available to drive.
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 teacher who taught her the proper techniques for moving about, using the white cane to provide information that would keep her safe. “Initially, I was embarrassed to use a long white 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 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 various 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 transportation and airports independently. She spends a lot of time doing things with friends and living the life 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 is to “realize that you are not alone, take advantage of the resources available to you, and most importantly, don’t worry about what other people think.”
If you find yourself in a place similar to Pauline, call us. We can help you connect with programs and services to increase your independence.
Contact our Client Services team at (401) 941-3322, ext. 121, for an initial conversation or to attend an upcoming VISION Group.
