Man who lives with Congenital Nystagmus

So, here I am in front of my computer for 8 hours each day, give or take, still wondering after these 53 years, if there have been any advancements in treatment. It’s been a long struggle, the worst of times was during my high school years, when I was teased about my crooked stare.

Congenital Nystagmus is a condition in which the eyes “dance”, failing in the ability to focus due to the “crumbled” retina. It was explained to my mother – when I was three years old, that my shaking eyes were due to Nystagmus. Back then it was speculated that the condition was most likely genetic in nature, since my parents were first cousins, and my oldest sister also had the eye condition.

Eyeglasses and contact lenses don’t actually correct the nystagmus itself, but the proper contacts and eyeglasses can sometimes improve vision. 

Later on in life, when I was able to understand, it was explained to me that my retinas were like wrinkled film in a camera, similar to what happens when you wrinkle aluminum foil. The retina is unable to fixate, and the eye takes on a shaking motion as a result of trying to focus on something.

Most people with CN have a favored part of the retina that has a better focal point, called the “null” point. Since this focal point is the better of the worst part of the “wrinkled film”, a person with Congenital Nystagmus will tilt his or her head in order to compensate, hence the “crooked stare”. 

I was not able to get a driver’s license until the age of 22, where in the State of Florida, here in Fort Lauderdale area, I met the standards of 20/70 acuity in one eye. Of course I had to be retested visually each and every year in order to maintain my driving privilege. I’ve been a “Safe Driver” ever since, getting only one ticket for making an unlawful U-turn.

I was involved in two accidents, none of which I was faulted for nor ticketed. Fortunately, there were no injuries. In both cases, the other party ran a red light. One was drunk, and ironically, the other was on his way to a car accident that his mother was involved in.

Since I am guilty of being a “back seat” driver, my attention to cautious driving has allowed me to react quickly to adverse conditions, as well as avoiding several would-be accidents. In my case, my better than average peripheral vision was a life-saver.

Since I had to sit as close to the chalkboard as possible, Congenital Nystagmus did affect my grades in school. I still had trouble seeing the teacher’s writing on the board, and had to often ask other students to help with notes. Some did, some were cruel and laughed at my affliction.

I did not date during my high school years, but I had a good social life hanging with peers that understood.

The job market was tough. I dropped out of college after my first six months because I couldn’t cope with the fact my eyes affected my desire to be in the broadcasting industry. I tried to get a job at the campus radio station (Southern Illinois University, Carbondale), but couldn’t work fast enough reading the small print on the labels of thousands of 45 rpm records.

After dropping out, I was declared legally blind by an ophthalmologist in Florida simply because he wanted me to get state aid in order to pursue my broadcast career. I took a city bus 4 hours each day to downtown Miami, where I studied Industrial Electronics in order to get a First Class FCC Radiotelephone license. A Third Class License was required to be a disc jockey at the time, but a First Class would give me the ability to work on Radio Transmitters ….a much higher paying job, which I had no interest in.

I had lost my interest, and confidence, and ended up in sales in retail for several years, then found a job as a copier service technician for the following seven years. After meeting my wife, we went into the musical instrument retail business, which folded ten years later due to fierce competition.

I also spent several months during the next few years performing music on cruise ships working out of the Port Everglades in Fort Lauderdale and working for the competition that ultimately put us out of business in the retail music industry.

I refused to let my eye condition take the best of me, but from time to time the frustration of knowing there was no chance for cure or further treatment irritated me.

Today, I mostly work from home, managing the marketing efforts of a few dozen internet clients. I no longer drive at night since I live in Nevada now and Nevada has higher vision restrictions than Florida.

As for my sister, she has struggled with Congenital Nystagmus also. Her experiences made it easier on me as she prepared me as to what to expect from others.

The bottom line is that CN is an obstacle, one of which there are many in life. As I got older, people have been more understanding of my eye condition.

For more information on Congenital Nystagmus, visit the American Nystagmus Network.

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