Finding My People
Foundation Arizona chapter president Fai Mo is sharing, in his own words, his experiences with being diagnosed with retinitis pigmentosa and how he found comfort in the Foundation Fighting Blindness community.
By Fai Mo
When I was finally diagnosed with retinitis pigmentosa (RP) in 2009, I had been experiencing vision loss symptoms for almost a decade. Attempts to understand what was going on left me feeling frustrated because a definitive diagnosis could not be made. Driving at night scared me because I would lose visibility of the lines dividing the road, and at some point, I stopped driving at night. There was certainly a sense of relief after my suspicions were confirmed, and I knew why I was slowly losing my vision.
My life changed as I met others with vision loss like me, as we shared our experiences and laughed over stories of running into things or kicking things over.
For years after my diagnosis, I knew no one else with RP. I felt alone, and although I could explain what was happening to my vision, no one truly understood. One time, I met a neighbor’s mother who had RP, and I felt an instant connection. She even went to the same doctor that I had in Boston for my diagnosis. Interestingly, it was her husband who suspected something because he led his wife the way my husband led me in dark and crowded spaces. There was comfort in this shared experience.
I attended my first Foundation Visions conference in 2016, and the experience moved me deeply. My life changed as I met others with vision loss like me, as we shared our experiences and laughed over stories of running into things or kicking things over. I also learned that white canes were not just used by those completely blind. Having feared the stigma of letting others see my disability, I wanted to avoid any sessions about using a white cane. But a voice inside said to let go of my pride and go to the session. It ended up changing my perception of using a white cane, and today, I proudly use my cane as it gives me confidence to travel independently.
At that conference, I met Jacque Olsen, Arizona chapter president, and we talked about the chapter, one she had been leading for over 20 years with her husband. I had been searching for an organization to volunteer with where I could use the gifts and talents I have to make a difference. I told Jacque I wanted to be her apprentice and learn from her. I became our chapter vice president and learned about the Foundation and the mission to find cures for retinal diseases. I also learned about services provided to me in Arizona, ones that would allow me to continue to work and live independently. I learned how to use a white cane, assistive technology, and read Braille. This probably would not have resulted without my involvement with the Foundation.
I have been the Arizona chapter president since 2018, and I am grateful for the ability to carry forward the mission and purpose of the Foundation. The ability to fundraise for research and to share my story with others is a blessing. I am most thankful for connecting with others going through vision loss and sharing this journey together. They understand what it is like – they are my people.