Cause of blindness - Retinitis Pigmentosa

Grace is a wife, mother, and grandmother living with Retinitis Pigmentosa (RP). She worked teaching the visually impaired community most of her career.

At eight years old Grace had night blindness, but she didn’t understand this was the earliest stages of her RP. Other than not playing outside on summer nights, Grace's childhood was by all accounts normal.  

While Grace could have been placed in a class for the visually impaired, Grace stayed in the standard class because she wanted to be treated like everyone else. She wanted to remain in the same class with her friends and not feel different because of her vision loss.  

In high school her night blindness became more apparent, as teenagers are expected more and more to hang out at night. Grace didn’t want to be embarrassed or hurt so she became very vocal about her night blindness to avoid any accidents.

In high school Grace also began losing her peripheral vision. Unlike her night blindness, Grace hid her peripheral vision loss from her peers. Grace did not want to admit it to others since she had not yet accepted it herself. And so when Grace knocked things over because of her peripheral vision loss, she rationalized these accidents with white-lies and half-truths.

The peripheral vision loss didn’t keep Grace from staying active. She was a swimmer and a swim instructor. Grace won blue ribbons in swim meets and was even entertaining the thought of training to compete at a national and international level. But because of her progressive vision loss, Grace decided to stop swimming. This was not the only opportunity Grace lost because of her RP. In Grace’s own words:

“RP undermined my confidence.”

Despite her condition, Grace stayed positive. Through her faith in God and her own will to live, Grace made things work. And through her trials, Grace came out stronger.

Grace worked for a nonprofit as a teacher and a life coach, helping the visually impaired maintain and cultivate careers, receive education, and navigate life. She found her purpose in teaching others how to live with vision loss. Grace loved teaching, she did it effortlessly and passionately.

“I think if you’re laughing when you’re learning, learning slips in without you really feeling it.”  

Towards the end of her career Grace’s field of vision was so reduced it was like looking through two keyholes. Grace understood that she soon may lose her vision entirely. The next time she was with her son, she knew that this would be the last time she would see his face. So she touched his cheek.

“What’re you doing that for?” he asked.

“Just ‘cause.” Grace said, and sure enough it was the last time Grace saw her son’s face.

Then, in 2001, while giving a lecture on strategies of living with visual impairment, Grace’s sight vanished entirely. Grace finished the lecture without saying a word about her final vision loss. None of her students knew that Grace had entirely lost her vision.

After the lecture was over, Grace called her ophthalmologist to schedule an appointment.  Grace went home to her husband and they cried together.

During her appointment, Grace’s ophthalmologist confirmed what she already knew: Grace was completely blind. Then Grace and her ophthalmologist cried too.

Grace was devastated, but was also grateful for all that she saw.

“I am blessed to have seen my daughter-in-law, too. She’s gorgeous inside and out.”

Grace didn’t see her son’s wedding but with both their families, they all witnessed it together.

Grace kept faith despite her vision going dark. She understood she was blessed in more ways than one. Grace had the support and love she received from her family, especially from her husband John.

For thirty years Grace had cooked for herself, John, and their family. But as her vision loss progressed, cooking became more difficult. Eventually it became so difficult that Grace had to ask John to check if the meat was cooked through. Finally Grace exclaimed:

“This is ridiculous, if I need you to check the meat you may as well cook it on your own.”

And to his loving credit, John did. He learned how to make the dishes Grace had cooked for so long.

“I told John: I did the first thirty, so you do the next thirty. And he started! No complaining or nothing.”

Although Grace stopped cooking, she started doing all the cleaning. She didn’t want to be coddled. Cleaning took longer for Grace than it did for John, but Grace was okay with that.

This is just one example of Grace and John navigating their marriage with a patience and unbreakable love. John had been there through seminars, eye exams, and clinical treatments with a love that asked for nothing in return.  

Grace was also blessed to share countless positive experiences with complete strangers.

On her old commute on BART, the Bay Area rail system, Grace used to rely on the conductors announcing stops to get to work. Their duty was to announce it twice: once while embarking from the prior station and again while arriving. But sometimes conductors mumbled the stops, only announced a single time, or never announced stops at all.

This became a big issue in Grace’s daily commute until Grace started asking people for help. To Grace’s surprise, everyone seemed glad to help. On one occasion Grace nearly missed her connecting train. One gentleman recognized this and began helping her without Grace even asking. “You need to transfer, right? The train’s boarding, take my arm let’s go!” In a rush they hurried to the other train, around a wall between the two tracks. “The train’s boarding, I’m going to hand you off!” the gentleman insisted, as he passed Grace by arm to another good samaritan waiting at the door of the connecting train.

From these experiences Grace learned to have faith in others.

Everyone has something wrong with them. Somewhere along the line, something goes wrong. We aren’t perfect.

“I don’t have names. I don’t have dates. I just have experiences, I had adventures. They were fabulous.”

Now Grace is much more comfortable with her vision loss. She could laugh about it with ease.

“People ask ‘you’re blind? You don’t look blind.’ and I go, ‘well, what does blind look like?’"

Though Grace was comfortable with her vision loss, she still followed the developing treatments for RP through a magazine subscription. Eventually, Grace canceled her subscription and accepted that there probably won’t be a major breakthrough anytime soon. But like most people with RP, Grace never let go of hope.

I don’t have names. I don’t have dates. I just have experiences, I had adventures. They were fabulous.

More than anything, Grace hopes to have her sight restored to see her grandsons. Grace has two grandsons and the love between them cannot be expressed in print. The older grandson has prayed since he was three years old:

“God please let my nana become unblind.”

He and Grace went on a walk, just the two of them. He was ecstatic, taking exaggerated steps, stomping down with gleeful energy, infinitely happy to walk with his grandma.

Though they walked alone, John had driven behind them at a distance. This bothered Grace a little, but of course she forgave John. She knew he did it out of love.

Like the clinic appointments, and through everything else, John was always there.

When her other grandson was a year old, he started walking. The family sat down for dinner, and her grandson stood up. As everyone watched, he walked over to Grace’s cane. The family thought he was going to play with it, but to everyone’s surprise, he walked it straight over to Grace.

Even if I haven’t seen my grandsons, I have seen them. And the Lord willing I will experience healing, and I will see them.

“Nana,” he spoke, looking up at her, offering Grace her cane. And for a long while after, Grace could not leave her cane anywhere without him fetching it for her. This is one small glimpse into the bond they share.

“Even if I haven’t seen my grandsons, I have seen them. And the Lord willing I will experience healing, and I will see them.”

Grace has the strength of her family, but her own will has also played an enormous role in her well-being. Once Grace asked John, “Am I goal-oriented?” and John looked at her in disbelief.

“Are you kidding me? You’re like a pitbull, when you get something in your teeth you won’t let go.”

Grace openly admits that vision loss is not easy, but it is an adventure. Her trust in God and the love of her family has built a wonderful life for Grace.  Occasionally Grace would break down at times when she felt like surrendering. But when she did, Grace surrendered to reality and to what God had in store for her. When she cried, it wasn’t to give up, it validated the pain and helped Grace get beyond it.

“Everyone has something wrong with them. Somewhere along the line, something goes wrong. We aren’t perfect."

Grace emphasized that there is always a future and that there is hope and life after blindness. Grace worked despite her blindness, for as long as she could. Grace taught by example to show that someone completely blind is fully capable despite visual impairment.

“If I can do it, they can do it. I worked to show them that.”


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