From Devastation to Joy


“Driving on a winding road in Virginia, I ran off the road and almost hit a woman walking with her toddler. My brain had not registered that they were there.” This is how Maile A. describes the incident that sent her to the doctor. The diagnosis — retinitis pigmentosa (RP). Already in shock, Maile remembers the doctor saying, as he guided her out the door, “You are going blind. We close at 5. Have a good night.”

Despite her gradually deteriorating vision, Maile’s life progressed fairly normally until, after a very difficult pregnancy, her son was born with several severe medical problems and sadly passed away. To add to her grief, Maile learned that there are many diseases that stem from mothers with RP, and her son had one of them. She remembers lamenting that, “I had always been a good person to everyone I met and could not understand why this was happening.”

Eventually, Maile moved to Santa Barbara, California to help care for her dad who was in poor health. Once there, she discovered Braille Institute’s regional center and learned that they could help her adapt to life with her limited vision. In the beginning, it was awkward. But after the first week or two she realized, “I can either choose to be miserable, or I can learn how to be the best me I can be.

I learned I can do anything I need to do — maybe a little slower or differently than someone, but I can do it nonetheless. I now prepare my dad’s meals confidently. I know how to defend myself after taking the self-defense class, and I realize that I am not useless.

This is why Braille Institute will be in my will. They have allowed me to have quality of life again. For that, I am forever grateful,” says a smiling Maile.