Insights into Independence: Meet Desirae

Desirae always knew Leber’s Hereditary Optic Neuropathy, also known as LHON, ran in her family. She had multiple family members diagnosed in their 20s as they began to lose their eyesight, including her mother. When Desirae reached age 30, she celebrated her milestone birthday with a camping trip, thinking she had been spared the hereditary condition.

Weeks later, the mom of three started noticing her vision rapidly decline. Her glasses no longer corrected her vision, and she found herself at her optometrist’s office being referred to an ophthalmologist.

“I knew things were going south pretty quickly, and that day, I knew immediately what this was,” Desirae said. “It was overwhelming and stressful, but they put me in touch with the Department of Rehabilitation, which referred me to Society for the Blind, and I’ve been there ever since.”

Employed by the State of California, Desirae tried to keep working and was grateful for her manager who made accommodations and helped her find resources. She was able to work from home, and her supervisor bought a screen reader for her – but there was no one to train her on how to use it.

“My boss was amazing, but it was taking me three or four hours to do tasks that used to take me five minutes,” she said. “It was overwhelming and just felt impossible.”

She also continued driving as long as she could, eventually only for the four-minute commute to and from work when she was alone in the car.

“I went from shuttling around my whole family on weekends to no longer being able to drive, and it felt like some freedom was taken away,” Desirae said. “I could no longer say, ‘Mom wants a Starbucks, I’ll be right back.’ I had to have my husband drive me or take a ride share.”

By fall 2024, Desirae decided to leave her job to focus exclusively on her Core classes at Society for the Blind.

“I needed to take a pause to figure things out,” she said. “My plan had always been to take the classes and keep working, but once I left my job, I realized that just wouldn’t have been manageable for me. With class time and transportation wait times, it can take three hours just to attend one class.”

Now age 32, Desirae has completed her Core independent living skills class and is now working on orientation and mobility, as well as assistive technology.

“The skills I’ve learned at Society have all been so insightful,” she said. “Before coming to Society, I couldn’t use my phone except for receiving and making calls. Now I can function my whole phone, as well as my iPad that I thought was useless after I lost my vision.”

Desirae said she can cook and do laundry by herself, too, thanks to the skills she learned in her Core classes. But she said one of the biggest insights into living independently with blindness is the instructors themselves.

“They have firsthand personal experience and can share tips and tricks they’ve learned along their journey,” Desirae said. They’re amazing resources without even realizing it. They’re just living their lives learning things along the way.”

Desirae said her family has adjusted well to her vision loss. Her children are now ages 10, 8 and 6, and she said her youngest tends to be the most mindful about her vision.

“She will bring a gadget or toy to me and put it in my hands so I can feel it, or she will bring something home from school and hold it close to my face,” she said.

Her husband has been very helpful throughout the journey, sometimes being “almost overly helpful,” she said, now that she has learned so many skills at Society for the Blind. Other times, she is so independent her family forgets she can no longer see.

“We’ll be in a parking lot, and I’ll be like, ‘Hello? Can someone say Marco Polo’,” she said laughing. “Everything has really mellowed out and we’re back to some sort of normalcy.”

She said eventually she wants to go back to work but first wants to finish as many classes as possible at Society for the Blind.

“I want to max out all the knowledge from my classes and pick everyone’s brains until there’s nothing left,” she said. “When I go for an interview, I want to go in confident, so I want to acquire as many skills as possible before even looking for employment.”

In the meantime, Desirae is happy that she now sees outings by herself as adventures and feels more confident.

“I just want to live in the world with sighted people and be comfortable in my skill set and my skin so I can do things by myself,” she said. “I hope people who have lost or are losing their vision will contact Society for help. They’ve been helpful and wonderful and do so much over there.”