Eat More Carrots!

Own The Equinox Day 4 | Journey Through Hearing and Vision Loss: Living with Usher Syndrome

By Martha Steele

My junior and senior high school years were in a memorable decade,
the 1960s. The decade was tumultuous, with shocking assassinations robbing the country of two Kennedy brothers and Martin Luther King, Jr.; the escalation of the Vietnam War; the stirring civil rights movement; the national phenomenon of Beatlemania; a chaotic Democratic convention in Chicago; and the Kent State killings, to name but a few notable events.

This decade also had its share of family upheavals. My parents divorced early in the decade, leaving my mother to raise two sons and a daughter as a single, working mother. My older brother, Tim, left in 1966 to attend Standford University in California. In 1969, over the course of a few short weeks, my mother married Erland Gjessing and made plans to move to Colombia, South America. My brother, Tim, returned from a junior year abroad in London and announced his engagement with a Stanford student he met while abroad. Brad would head off to Harvard University that fall to begin his freshman year, and I would learn that I would be leaving in August for a year abroad in France under the auspices of the American Field Service
program. By the end of September 1969, our family of four, now six, was spread out in France, Colombia, Massachusetts, and California.

This was also the time that signs of vision issues with me began cropping up, although no one, least of all me, thought much of the early signs. Most noticeably, I clearly did not have the night vision that everyone else had. For example, my mother remembers that as a young child, I was the only one of the three of us that asked for a night light in my room. Still, lack of night vision did not greatly hamper me, as I was usually able to take advantage of city street lights or other lights to see well enough between sunset and sunrise. But in situations with little artificial light, the world was black and I was amazed at how well others could see when all I saw was total blackness.

Of course, the solution to night blindness was to eat more carrots, and believe it or not, this is exactly what my doctor ordered me to do. Not liking carrots, I did not oblige. I would do just fine, thank you, as long as there were some artificial lights available.

Not liking, and therefore not eating, carrots gave me a convenient explanation for not seeing well at night. So, I really was not that concerned, nor apparently were my doctors.

Like most kids, I got my driver’s license at age 16 and was totally comfortable driving at night primarily because of the fact that the headlights provided plenty of light for me to see the road well.

But another issue could have, but did not at the time, raise another red flag. My mother noticed that I had the tendency to step on or in things on the floor, such as the dog food bowls. It appeared that I was not seeing peripherally below me as well as others. In another unconscious adjustment
that she later would finally understand, she would see me coming and move
things on the floor out of the way.

We were still 10 years away from the diagnosis of retinitis pigmentosa, or RP, which is characterized by loss of night vision followed by loss of peripheral vision and finally loss of central vision. These early signs in junior and high schools were symptoms of RP but we did not know that at the time.

Fortunately for me, life was hardly affected by what I thought were minor vision issues. I played girls’s basketball in high school, and as anyone who plays the game knows, you have to have decent peripheral vision in order to play at a high level. A lot of people in a small space constantly moving to be in the best position to defend or make baskets requires good peripheral vision to avoid smashing into each other.

Driving a car also requires excellent peripheral vision, and I have no memory of any concerns driving a car after I got my license in 1968. I loved to drive, and I loved the freedom it offered. In short, I was like any other teenage kid, going to school and worrying about grades, playing sports, participating in a myriad of extracurricular activities, paying attention to current events, thinking about colleges, fighting insecurities, and contending with peer pressures.

By now, I had adapted well to hearing aids and I had no worries or even thought about any vision issues. As far as I was concerned my vision was excellent (20/20 in fact), I just had this little nuisance of poor night vision. I thought I knew the hand that I had been dealt and I was pretty satisfied with how I was coping with it. I had my life ahead of me and I fully expected it to be normal and without major surprises. It would be several more years before I would learn otherwise.

Tomorrow: Learning a New Language

Alvin relaxing on our Vermont property after today’s walk.

August 26, 2016: 23 days until Usher Syndrome Awareness Day
Miles Walked Today: 5 miles in Westmore, Vermont
Miles Walked To Date: 22.5 miles

Martha Steele is a member of the Board of Directors of the Usher Syndrome Coalition, as well as the Board of Directors of the Carroll Center for the Blind in Newton, MA. She also serves as a National Trustee and Boston Chapter president of the Foundation Fighting Blindness.