Cause of blindness - Retinitis Pigmentosa

Sarah is 65 years old and she lives with Retinitis Pigmentosa (RP). She is a counselor and is no stranger to loss.

Sarah was diagnosed with RP in 7th grade, and all she really understood then was that she had night blindness.

“Back then it didn’t impact my life very much, I had no idea what an eye disorder was like. I had no vision at night, that was the biggest thing.”

“I didn’t know it was going to get worse, and as I became older, it really started impacting my life.”

Movies, nights out and dates all became difficult to navigate, not only because of her night blindness, but also because Sarah had trouble accepting help and sharing her condition.

“I think my biggest mistake has been not being able to ask for help. I wish I embraced help much earlier, instead of now when I have to.”

I’ve learned that it’s okay to be helpless, it’s okay to be needy.

Sarah runs her own counseling business and is discrete with her RP. Without her employees and clients knowing, Sarah can focus on work and leadership. None of her employees know that she has a problem with her vision, though they do know Sarah doesn’t drive.

“I’ve learned that it’s okay to be helpless, it’s okay to be needy. It’s things that I say to my clients all the time, but it’s really hard for me. It’s hard in our society, we’re supposed to get out there and make things happen.”

Sarah plans to start her own support group for people to share their experience with vision loss and connect with others who are going through the same.

“Support groups are really important. They’re so critical, but I don’t know of any. That’s why I want to start one.”

Helping those in need is at Sarah’s core, even before she became a counselor. Sarah and her husband adopted many foster children, including two sisters. It was something they did together, and they inspired two of their friends to do the same.

“When we got these girls, we joked we couldn’t get sick or pass away.”

For some time they lived together as a family. Then by an awful twist of fate, Sarah’s husband fell ill. He passed not long after. At the young age of 43, Sarah began raising these girls alone.

Her husband’s death did not keep her from doing what she and her husband loved. So Sarah continued their passion for helping children, adopting two more into her family.

The void left from her husband’s passing made things infinitely more difficult. Not only was Sarah’s vision loss progressing, but she was also dealing with children that had attachment disorders and problems with stealing.

“These children had issues I didn’t even know people had, sometimes I didn’t know what I was doing.”

“That was all harder with RP and without my husband.”

For Sarah to go through so much with minimal help is remarkable. Though it’s been hard for her, so many have benefitted from her work and her passion. Sarah has built her life around giving much more than she takes.

“Nothing has gotten better, but I have become more perceptive to loss.”

“I used to walk down to the lake and swim, and my dog would run around. Now when light is too soft or too bright, I can’t see. My dog passed away in March, and I can’t get out when it’s sunny anymore.”

Though Sarah loved her dog, she gave up owning because she knew she wouldn’t be able to provide the walks and outings a dog should have to thrive.

Sarah still finds ways to stay active. She swims to stay fit and walks on the greenbelt by her house. She reads and shops. But Sarah knows she’ll have to give up these activities someday.

“It’s terrifying going through progressive vision loss. However, a little bit is so much better than none.”

With that little bit Sarah can still do a great amount.

“Like babysitting my granddaughter, she’s the joy of my life. I’ve gotten to babysit and take care of her, which I didn’t think I would be able to do.” 

“And I didn’t think I’d be able to work at 65. I’m so blessed I love what I do.”

In the areas Sarah has lost her independence, her roommate Kyle has stepped in to support. Kyle is also her best friend, and they live in a beautiful home next to a nature preserve.

“My friends, family, and my sense of humor, in spite of it all I feel blessed beyond belief.”


To learn more about Lynn's condition, continue here.