Why I No Longer ‘Hide’ My Vision Loss


It was May of 2008 and the sun was blazing as my dilated eyes flooded uncontrollably with tears while I walked home from the optometrist’s office. His words rang through my head. “I’m 99 percent certain you have retinitis pigmentosa (RP). I’m very sorry.” I had never heard of this disorder until a few months earlier, but by Googling my symptoms, I was sure I had it — but also sure he was going to tell me I was wrong.

I went through all the emotions. I didn’t know if I’d be blind next month or when I’m 90. Neither did the specialist. “I’ll never go blind. I will never forfeit my car. I will never…”

My daughter told me things she looked up online, like advice to “eat more carrots” and certain vitamins. My family back home pretty much did not acknowledge it. No one seemed to understand but me. I was on my own.

I tried therapists who asked about my mother or gave me the definition of RP, which I knew already. The specialists would measure the stability or decline, which I could do myself for free. I was done with any healthcare whatsoever. The National Federation of the Blind sent me a cane, which collected dust in a corner.

I tried Chinese medicine and went to a shaman and a lot of bars. I spent a fortune on any herb I read about for eye health. At one point, I was choking down 10 supplements every morning.

About four years into it, driving became a paranoia trip. I was face-planting into strangers and not recognizing friends. I decided to look into the Braille Institute, which was suggested to me back in 2008. Maybe they could help me with driving? I signed up for some music classes, but soon dropped out, since I was not like “them.” I stuck with my regular activities such as improv, which resulted in disaster. I was noticing major errors in my proofreading job, which slowed down my production, as I was proofreading my own proofreading and editing. I then found out I was developing cataracts, which come early with RP.

Without notice, the five-year contract for my job was not renewed. Knowing that my driving days were numbered, I took my car on a foggy road trip along the cliffs to Big Sur, California. I had two accidents the following week. I thought the cars were moving, but they were not. I painfully sold my car, which was a step toward acceptance. I failed every test I took for a new proofreading job. I realized it was no longer an option, and neither were simpler jobs, like a barista, that I had applied for.

After a year of struggling, I decided to move out of the hills, closer to transportation. I could go back to school and possibly find a therapist.

Steps one and two were under way. Then by a miracle, I found a therapist who lost her sight in adulthood! In our first meeting, I saw a beautiful, stylish, confident, independent woman with a fancy office in Beverly Hills. “Hey, this doesn’t look so bad,” I thought. After learning that I refused to carry a cane, she brought me a folding cane that I could “hide” in my purse. It took a couple weeks before I put it in my bag. I would occasionally use it if I were in unfamiliar territory after dark, then in the busy train station where I was most clumsy. Suddenly, people on the sidewalks were moving out of my path. People were asking if I needed help. The cane had perks!

I was in the train station once and two tough-looking guys were rushing past. One told his buddy, “Wait, I gotta do something.” He came over to me and asked if he could help me. I told him I was going to the escalator. He took my arm and said, “I’ll take you there.” I could see it, but I let him do his deed. That moment showed me the true beauty of compassion. That day still brings tears to my eyes.

On the flip side, the cane makes everyone believe I see nothing. There are adults who jump in my path and wave their arms or just see if I will walk into them. This happens daily from well-dressed 20 to 50-year-olds. There are head-turning stares. Conversations stop. Some people tell me I’m beautiful, with a lot of emotion. I like to think I’m like a celebrity, minus the paparazzi. I also keep a sense of humor about it, like when strangers say, “I’m sorry.” I reply, “Oh, so you’re the one who did this?” I try and focus more on people like the man in the train station.

Today I am in TV writing and journalism classes. I live in the awesome city of Los Angeles where I have transportation and everything I need at my fingertips, plus a great community. I will never give up hope that there will be a natural cure for this, although my vision has diminished greatly. My cataracts are worse. I can’t see people further than an arm’s length away and I see six to eight moons. My periphery tunnel has shrunk to a mere 7 percent. With lighting, sunshine and weather, my vision can differ.

A bicyclist recently broke my folding cane. But instead of getting a new one, I decided it was time to swallow my pride and dust off the first one — the one that doesn’t fold. No more hiding out.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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