A Bookwoman’s Vision: Myopia, Cataracts, Glaucoma and Ocular Histoplasmosis Syndrome

Journal and Eyeglasses

Are you familiar with Ocular Histoplasmosis Syndrome? Read on to learn about this rare but sometimes devastating visual condition can affect those who have lived in Missouri, Arkansas, parts of Oklahoma, as well as other states.

I have attempted to write this post twice before and I hope the saying about the third time being charmed is true. I am in a state of uncertainty about how to talk about my own issues, especially about my health,  in light of my blog’s focus on books and reading. I don’t want to make this about me — but don’t know a better way to illustrate how vision can shape the worlds of us all, particularly those who love and promote reading. So, I will share my vision story while I prepare for my cataract surgery tomorrow morning.

My vision problems became apparent when I was eleven years old. I remember that my dad noticed that I was squinting and pointed it out to me, suggesting that I try to break what could become a bad habit.  He also decided to have my eyes examined and I was diagnosed with myopia and fitted for glasses. I was also subjected to weekly sessions in a darkened room at the optometrist’s office with exercises that were designed to improve my vision. I don’t remember any positive results from the exercises, but have memories of how tedious and boring they were.

The good news was that I could see beauty in new detail with my new glasses.  The shimmering leaves became visible individually and the fluffy white clouds appeared to take on lives of their own.

The bad news was that I could also see (what I perceived as) ugliness in detail. The only positive effect of my glasses was that they partly camouflaged my pimples and the red birthmark on my cheek. I could also see much better, so I wore them.

Julia Reagan -- Age 14 -- High School Freshman

I had heard the Dorothy Parker trope which was popular at that time: “Men seldom make passes at girls who wear glasses.” At age eleven, I had no experience with men (or boys) making passes, but I had hopes for the future.  My glasses didn’t reassure me, and as I entered high school, I became even more dissatisfied with my appearance. I was given permission to experiment with makeup (with strict admonishments when my experiments went too far) and I looked for ways to “accentuate the positive”, as the teen magazines advised.

Very fortunately for me, contact lenses became available and I was fitted for mine in 1963, when I was a junior. Some of my friends tried to wear them without success, but I was determined and fought through the days of getting accustomed to the hard lenses. I had chosen vivid blue lenses, which made them easier to see if dropped and which made my eyes a rather startling color, which I loved.

With my new contacts, new skills in makeup, and the new popularity of hair teased and sprayed into unconquerable heights, I finished high school and entered college with new-found self-confidence.  I thought that my vision problems were over.  They weren’t.

It is true that I had years of uncompromised vision — time enough to complete college, marry and have children, and enter a career as a librarian. I am grateful that my contacts gave me few problems, other than an occasional broken or lost lens and discomfort from wearing them too long or (horrors!) while sleeping.

Then I noticed an oddity in my vision, a certain waviness in the outside line marking the lanes of the highway where I was driving. By this time I was in my early forties and so accustomed to seeing without difficulty that I convinced myself that the problem would disappear.  It didn’t.

I made an appointment with my optometrist and he sent me to the Dean McGee Eye Institute in Oklahoma City. Their tests concluded that the wavy line was a result of Ocular Histoplasmosis Syndrome, a rare bi-product of a fungal infection that I had as a child.

I learned that as many as 90% of the population in the states where it is endemic (including all of Missouri and Arkansas and part of Oklahoma) have had the infection, which is spread by breathing the spores released by bird and bat droppings in those areas.  (It turns out that people in the construction trades are especially vulnerable, since their work often includes the disturbance of the soil where the bird droppings fall.  My dad was a building contractor and we usually lived near or in subdivisions he was developing.)

Most of those infected by histoplasmosis are not aware of it, because the symptoms are similar to a cold or mild flu.  Occasionally it can spread to other parts of the body and cause serious illness. Rarely, the spores can travel from the lungs to the eye(s), eventually causing vision problems or loss.

What I was seeing was the result of the growth of abnormal blood vessels.  I was told that surgery was an option and that waiting could sooner or later result in the movement of the affected area to the center of my vision.

I decided to wait (for just a while).  Within a couple of weeks, the movement had occurred, and my vision was gone in the center of my right eye.  It was and is as if someone placed a gray splotch in front of whatever I focus on (including any sentence or paragraph I’m reading or any person’s face I’m trying to recognize).  It was final and irreversible.

My eyes adapted and my left eye took over the tasks my right eye could no longer perform. I continued my life as usual until middle (and beyond middle) age took their toll.  Isn’t it amazing how many conditions can affect something as small as your eyes?  I now have four: myopia, glaucoma, cataracts and OHS.

It is time to deal with the cataracts so that I can feel comfortable driving (and reading road signs) when it’s raining, at night, and when I’m out-of-town. I would be dishonest if I told you that this surgery on my left eye doesn’t cause me a little anxiety. I’ve been protective of the full (if flawed) vision it provides me.

At the same time I am a realist — my husband says that I focus too much on the negative. I don’t consider it negative to practice walking with my eyes closed (to see what it would be like to lose my vision completely) or to think about how I could still read if I couldn’t see. (I would use audiobooks or press family members into service to read to me.)  I call it preparing for the worst and hoping for the best.

I am also full of gratitude for the corrected vision I’ve enjoyed and the members of science and medical community who have guided me through my problems.

I am also aware of the many, many people who have dealt with more tragic and heart-breaking health issues than my own and admire the grace and grit that most of them display.  Several of them are in my own family and I imagine that some are in yours.

As for myself, as always, I look forward to seeing more clearly.

 

 

 

 

The Magic and Power of Story in Our Lives

It's All About the Story

My bucket list goal of writing a novel has led me to a study of story and a new understanding and appreciation of its place in our lives. I am now convinced that it is as important as our DNA and the blood that flows through our veins, to our survival as individuals, nations, cultures and even our own species.

For me, it has been a recognition of sorts – an “I knew that but never thought about it” moment, which deserves a reminder for those who might think, “So what? I’m never going to write a novel and I know a good story when I read it or hear it.”

It is true that most of us know a good story when we read it (and we put the book down if it’s not good).  Story is even more fundamental than that when we examine how we learn and live our lives – story is one way our brains function, as explained by Lisa Cron in her book, Wired for Story. She tells us that recent breakthroughs in neuroscience reveal that our pleasure in a good story leads us to pay attention – it’s nature’s way of making sure we learn about our world.

Our Brain Prepares Us for Story

My father told me that I was a good baby.  I could be placed on a quilt on the floor and be told to stay there and I would. I’m not sure that I was that “good”, but I heard also that I was observant.  I was happy to watch what was going on around me, whether I was on the floor or watching the curtains flutter above my crib. Since I was also obedient, my curiosity didn’t take me beyond my boundaries. Perhaps my brain was preparing me for the next phase of its development.

Parents are often driven to distraction by one question they hear from their small children – “Why?” I believe that this is one avenue to our brain’s function of constructing and receiving story. When a child asks “why?”, he is learning to interpret information so that his world makes sense.

Some children are fortunate enough to have parents who tell and/or read stories to them, so that they begin to feel and understand the pleasure that a successful story brings – another function of the brain.

Story Prepares Us for Reading

I remember Dick, Jane, Sally, and Spot.  They held my interest through the first grade, as I learned to decipher the meaning of the words beneath the illustrations. I stayed with them as they spoke to each other in their stilted phrases: “See Dick throw the ball.  See Spot run.” It didn’t take me long to figure out that nothing much was happening; there really wasn’t a story.  I’m sure that Miss Carroll was as happy as I was when we could move on to stories. I knew instinctively that a story required conflict and change. If Dick threw the ball to Jane and accidently broke her nose, that would have been the basis for a story.

Story Enables Us to Retain What We Learn

What do you remember from your history classes? I suppose that I figured out what I was expected to remember and retained just enough to make a passing grade. There was no curiosity to my learning, which was likely because I didn’t recognize the context.  Context is necessary for story and if it’s absent, we just have a lot of facts or dates that don’t teach us very much.

Today, as an adult, I have become accustomed to following up on historical events by reading about them as presented in context – in other words, in story form.  I have found that I better understand the meaning of what happened, what other events were going on at the same time and how it all affected those who lived through it. For example, John M. Barry’s The Great Influenza: The Story of the Deadliest Pandemic in History taught me about the Spanish Flu, and I also learned about its effect on World War I, possibly contributing to the circumstances that led to World War II.

Story Helps Us to Learn About Ourselves

Fiction can also help us to understand context and lead us to better awareness and understanding of ourselves and those around us. We develop empathy when we read of the lives of those in the story and can transfer it to those we meet in the real world.  It can also let us see that we are, in a sense, writing our own story and as humans, must deal with internal and external conflict.

We have learned most of what we know about ourselves collectively through story. Christians celebrate and share The Greatest Story Ever Told, and other religious traditions also use story as Jesus did, to instruct and inspire.

Nations also depend upon story to construct a testament for shared beliefs and values.  If “Those who do not learn from history are doomed to repeat it”, then it is important for citizens to understand the context for their laws. Open societies like our own provide a continuous flow of conflict beyond the basic “good and evil” to those of two values like freedom versus security and diversity versus similarity, making our story more complex and dynamic.

Story Helps Us Connect with Others

This leads me to a one commitment I made when I retired – to encourage others to reach out to others through their own memories and stories.  We are in a period of history with access to more ways than ever to “write our story”, but many of us are choosing the easiest and most temporary way to connect.  It’s as if we want to be remembered by a selfie and what can be written in a tweet. Our stories are precious and fragile and we shouldn’t be satisfied with what will be written (by others) in an obituary or left on a grave marker.

I am working on another website and blog devoted to ways we can write our own stories so that our children and grandchildren can know more about our lives than what our genealogy and DNA can report. I hope that you will join me there, and return here also, as we explore the magic and power of story.