The Moment I Discovered I May Be Losing My Eyesight

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I have learned this about the golden years: They always tarnish; it is just a matter of when and how badly.

For me, the tarnish crept on slowly, and then all at once. It began shortly after my 65th birthday, when I noticed something wonky with my eyesight. One morning, driving on the highway at sunrise, I was so blinded by the glare in the rearview mirror, I couldn’t see to change lanes.

I slowly inched across two lanes of horn-bleating, morning traffic until I made my way to an off ramp. It was terrifying, but I didn’t think anything was wrong. I simply vowed to no longer drive in the early morning hours.

I didn’t give it much thought until a few months later, when I had trouble seeing while driving home one evening. Since I had already had cataract surgery, I knew something else was going on, but figured it could be remedied.

I eventually found my way to a retina specialist and learned the mind-blowing truth. I was losing my eyesight. Sort of.

Let me explain. I suffer from an incredibly rare genetic disorder called choroideremia — a mouthful, I know. It is a defect in the CHM gene that causes deterioration of the retina, the light-sensitive tissue at the back of the eye. Too little or too much light makes it hard to see.

As rare as it is, the disease is almost unheard of in women. And while its origins are genetic, no one in my family, male or otherwise, had suffered from it.

Men typically first notice symptoms like mine in their late teens and become totally blind by middle age. There are so few women who suffer from choroideremia that the doctor I saw at the Dallas-based Retina Foundation of the Southwest was practically giddy when we met.

“This is so exciting,” he exclaimed as I stepped into his office after finishing a three-hour battery of tests to confirm the suspected diagnosis.

“Exciting for whom exactly?” I replied churlishly.

“Well, I have never seen this before,” said the doctor, an elderly gentleman who was at the end of a long career, which gives you some indication of just how much of a unicorn I am.

The excited doctor was blithely unaware of my terror, my fear of what my future would hold, how long I had before the beautiful faces of my grandsons would disappear before my eyes.

The doctor had little to offer. The disease is progressive, but blessedly slow in women, he said. There is no cure, though scientists around the world are working feverishly to find a cure for choroideremia and a host of other eye-related genetic illnesses.

It is unlikely I will go blind, the doctor assured me, but he could not tell me how handicapped I might become. There was nothing more he could do, so he wished me well and told me to come back in two years.

In what felt like an eye blink, my life — or what I thought my life would be — changed.

Instead of cures, I had to look for ways to adapt. I realized that despite the rarity of the disease, I am in good company with legions of people who suffer from a hidden handicap — something that makes life more difficult, but is not readily apparent to most people.

I am forced to live more mindfully in each moment, walking down a sidewalk or a parking lot with my head down, making sure I do not trip over uneven pavement or a curb. No more rushing to my car while talking on the phone and rifling through my purse, which has led several of my able-bodied aging friends and relatives to sustain bad bone breaks in a fall.

Loving friends offer to drive me places at night, and I negotiate my way through the dark with a flashlight I carry everywhere, much to the delight of my young grandsons, who fight over it every time I see them.

It has been two years since I was diagnosed and I have noticed deterioration. It is often hard for me to recognize people in low light, which can make socializing in big groups challenging and awkward, when I misidentify the person I am talking to. I refer to these as my Mrs. Magoo moments.

Dining in restaurants became almost impossible until I found an elegant portable lamp to take with me, much to the curiosity of restaurant managers, waitstaff and patrons. Some managers have asked where they can be purchased, and I happily share the information. But what I really want to say is, “Why don’t you just turn up the lights?”

When people ask me how I am doing, I tell them everything is harder, but nothing is too hard. Not yet, at least.

Maybe I am just a silver-linings girl, but there have been some upsides. My halting gait and other struggles have forced my husband to become more patient and my children more empathetic.

It has also made me lead with more grace, especially extending it to people who don’t seem to deserve it on the surface. Take, for example, a recent trip I made to the supermarket. The fluorescent lighting made me feel like I was looking through plastic wrap, and I could not tell if there was an open self-checkout at the end of the long row.

Acutely aware of the viciousness of impatient shoppers, I didn’t want to slow the line, so I asked the man next to me if he could see an open checkout. He immediately thought I was cutting in line and told me so with a snarl.

Confused and rattled, I mumbled an apology. I was also miffed and wanted to snap back. Instead, I waited my turn and then headed out, noticing he was still at his checkout fumbling with his single item, obviously suffering from his own demons.

I walked by and, under my breath, uttered the words “stupid ass!” It felt good to say it. It felt better that he didn’t hear it, as I was reminded of the grace I want to be given as I stumble through my darkening world. And it reminded me of a saying that a friend has affixed under her email signature: “Be Kind. Someone may be fighting a battle you cannot see.”


Do any of you suffer from anything like the above? Let us know in the comments below.