Cause of Blindness - Retinitis Pigmentosa

Patrice is a 63 year old woman with a young soul and a warm disposition. She has lived through retinitis pigmentosa (RP) and lung cancer with a sense of humor, a strong spirit, and a supportive, loving family.

On the day Patrice first noticed her vision blurring, she figured it was temporary. Instead it worsened to the point where she felt unsafe to drive.

Patrice called her doctor to explain the problem and was immediately admitted to Stanford’s medical hospital.

They ran all the diagnostics they could, but after two weeks of testing Patrice was released without a diagnosis. Patrice returned home with many questions:

“How am I going to cook? How am I going to function? And the big underlying one: how am I going to go on living my life?”

These were questions that had little to do with her diagnosis, but they had everything to do with how Patrice was going to live with her condition.

“I didn’t know what I was going to do, how I would navigate and commute, or if I could work.”

The number of unanswered questions was overwhelming.

Though Patrice didn’t get the answers she needed, she stayed optimistic. Patrice joked all the time, making light of everything, even her own troubles.

“I thought maybe they could connect my brain to my eye. Or maybe they could take apart my brain and figure out what’s wrong with it.”

There was a period of uncertainty when Patrice didn’t know if she was fit to work. But Patrice’s boss turned the issue on its head; he was confident Patrice would be more than capable, and they couldn’t make do without her.

He pushed because he needed Patrice, but he also was supportive and encouraging when Patrice needed it most. In addition to believing in her, Patrice’s boss helped her find the resources she that would help her continue working with her vision loss.

Of course I wasn’t okay, but I’m always going to get on with my life. I’m going to keep moving forward past whatever tries to stop me.”

The best resource Patrice received was a job coach at work. By showing Patrice how to utilize new technology, her job coach helped retrain Patrice so she could continue doing her job well with her vision loss.

Patrice’s swift return to work left no time for worry.  Though things were moving along quickly, Patrice believes the pace was a blessing since it left no time for wallowing in self-pity.

After having settled in to work, a social worker asked if Patrice was okay.  

“I’m probably as good as I’m going to be.”

At that time Patrice had much more to say, but she knew sharing it all with that social worker was not going to change anything.

“Of course I wasn’t okay, but I’m always going to get on with my life. I’m going to keep moving forward past whatever tries to stop me.” 

“Things can be overwhelming emotionally. I think it’s best to just start with what you need. Then you’ll be happy.”

Patrice adjusted, things settled, and everything seemed as normal as it could be. But the speed and confusion left Patrice with little bearing on what vision loss was and what it was going to be like.

Often people had no idea that Patrice was working with vision loss, so they were surprised to find out she was. To Patrice it seemed as though they expected her and anyone with vision loss to give up and mope around, as if sight was essential to happiness and a good life.

When Patrice explained to others that she was visually impaired and that she did work, they would respond in ways they wouldn’t to sighted people. “Oh, you do work! That must be very gratifying.”

But Patrice believes if we can work, we should. Though it is impressive she does work, Patrice doesn’t think of it as any special feat. She enjoys working with her coworkers, and like everyone she needs to earn a living.

“Things can be overwhelming emotionally. I think it’s best to just start with what you need. Then you’ll be happy.”

In the past, Patrice and her husband wanted a child. But the RP Patrice lives with is hereditary. She now believes God made the right decision for her not to conceive.

Patrice ended up having complications with her health that went beyond her vision loss. In addition to her RP, Patrice developed lung cancer. 

Despite the gravity of her situation Patrice made light of her condition.

“I’m on a five year cleaning hiatus. Doctor’s orders…. That’s a joke, you’re supposed to laugh!”

Patrice told us that because of her RP and cancer, she learned that there is no rush to life. From this patience Patrice found she could truly listen. She noticed herself connecting more deeply to those close to her, and for that Patrice considers herself blessed. Blessed for her family and friends, and for all the relationships Patrice has built despite her imperfect health.

She attributes her perseverance to these strong bonds.

“I think family and friends can get you through just about anything.”  

Patrice’s husband especially has been an amazing source of support.

“He’s a wonderful, kind-hearted man who has been at my side through all my pain.”

As a couple they cherish their time together, and Patrice told us despite all her suffering, she really hasn’t had to give up all that much.

“I still like to cook. I walk and exercise, sometimes… I’m needing to do that!”

Patrice reads as well. She doesn’t use small print anymore, but she has a kindle that she uses to magnify the text, and has many books on tape.

By using a cane Patrice retains her independence, something that she does proudly.  

There are times when others believe Patrice has no problem seeing, and Patrice often finds it funny. Sometimes when Patrice is shopping other customers will approach her and ask:

“Can you read this?”

“Yea, let me just get my magnifying glass out.” 

And if they don’t get the hint or notice the cane she’ll let them off easy. “Yea you’re asking the wrong person.”

Other times it becomes a problem.  

“Sometimes people take my cane. Like, take it. I try not to get frustrated, but it’s like ‘wait a minute, where are you going with that?’”

Of course Patrice has her own fun with the cane too.

“When I carry a cane I can clear a path like that.” 

“People try to be respectful. But let’s be real… they also don’t want to get hit by a cane.”

Patrice navigates on her own, and she works, cooks and cleans.  In most every respect Patrice is independent. The only time Patrice will ask for help is when she feels she may be in harm’s way.  

Once Patrice was getting off a train carrying too much. One gentleman offered help but Patrice refused. Then as she stepped off the train, Patrice tripped. She hit the ground and her things fell everywhere.

Fortunately Patrice was not seriously hurt, but that was a wake up call for her. Since then, Patrice asks for help whenever there is risk of injury.

Yet this cautious mentality does not stop Patrice from trying exciting new things. For instance, Patrice went ziplining with her friends and she loved it.

“Keep going, keep doing. Life is too short to stop.”

“And my nephews take good care of me too! They give me such a ration of business, I am an easy target. But that’s okay, I like it.”

Patrice loves both her nephews. They make her feel young.  

Once Patrice’s nephews took her duck hunting in Yuba City:

Nephews: “Want to come to the duck blind with us?”

Patrice: “Duck blind… What is that supposed to mean?”

N: “No, no! You sit in a duck blind!”

They explained the duck blind: a place for hiding amidst the ducks so they would be situated for better shots.

Patrice: “Wow! I don’t know if I want to do that!”

But of course Patrice was joking, she was happy to come along.

Patrice did not have a hunting license, so her nephews weren’t going to let her shoot at any ducks. But that did not mean they could not have a little fun.

N: “Do you want to shoot the gun?”

P: “Sure! What am I going to shoot at?”

N: “Nothing.”

Patrice thought that was fair enough, and one of her nephews handed her the gun.

N: “Don’t squeeze the trigger yet, tell us when you’re going to shoot it!”

Without warning, Patrice shouted “I’m ready!”, and she fired the gun.

Her nephews lost it, they weren’t prepared for the blast.

N: “You were supposed to tell us!” 

It gave them a scare, but they all got a good laugh from it.

Patrice adventures with her husband too. There is a hike that they love to do, and it’s not an easy one. It takes scaling rocks and navigating an unbeaten path. Sometimes Patrice finds herself second guessing her decision.

“But then we get there, a great spot right over the ocean. Sometimes I complain a bit on the way up, but it’s always worth it.”

Here Patrice embraces the roar of the waves crashing against the shore, and the salt water whipped up into the wind. It’s an experience that doesn’t need sight to be savored.

Patrice lives a fulfilling life with her RP as an afterthought. Though some things are different for her, Patrice’s life still has both love and adventure. She is always finding reasons to laugh and smile. And when those reasons disappear, Patrice makes them for herself.

We asked Patrice: “Despite your circumstances, how do you stay happy?”

There was no secret ingredient in her answer.

“I do the things I need to do.”

Patrice could have let her circumstances ruin her, but despite RP and cancer, Patrice chose to keep living, and to live well.

“Keep going, keep doing. Life is too short to stop.”


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