My Low Vision Journey

An Unidentified Eye Condition Caused by Genetic Mutation

Scientists do not yet fully understand the eye condition that I have, but it is currently under research.  When I find out more about it, I will let you know. Meanwhile, I would love to share with you my journey with low vision. Maybe you know someone who has low vision or maybe you have low vision? Either way, I hope this information is helpful to you in some way.

What we do know about my eye condition is that it is caused by a genetic mutation.  The major symptom of the condition is an elongated eye which causes extreme near-sightedness.  This in turn leads to an increased chance of retinal detachments and cataracts.

The Symptoms of the Eye Condition

The severity of nearsightedness is often categorized like this:

Mild myopia: -0.25 to -3.00 D
Moderate myopia: -3.25 to -6.00 D
High myopia: greater than -6.00 D

Myopia is measured in diopters (D), which are the same units used to measure the optical power of eyeglasses and contact lenses. Lens powers that correct myopia are preceded by a minus sign (–), and are usually measured in 0.25 D increments. Since contact lens are worn directly on the cornea of the eye, the prescription will require less power.

My myopia was measured at -19.00 D.  My children’s myopia ranges from -13.00 to -18.00.  So, as you can see, our level of nearsightedness is very high, so much so that when we visit a doctor’s office for a checkup, they usually bring in everyone they can to have a chance to look at someone with such extreme nearsightedness. We usually also hear comments about the incredible length of our eyes.

If you have high myopia, there is a greater chance of developing a retinal detachment. This is when a hole or tear develops in your retina where it has been stretched by the eye’s elongation. The fluid in your eye can leak through this gap and pool behind your retina. The fluid buildup can cause the retina to detach from the back of your eye. Since my family has such a degree of high myopia, our chances of a retinal detachment are greatly increased.

The stretching of your retina also causes it to become thinner. Because of that, a common occurrence in cases of extremely high myopia is areas of retinal atrophy. These are areas where your retina has become very thin and can affect how your retinal cells work. When an optometrist or ophthalmologist looks into your eye the areas of atrophy look very pale and blood vessels that are behind the retina can be seen through them. Your vision at these areas may be reduced or even blanked out, causing blind patches in your sight. Retinal atrophy can occur anywhere on the retina and if it happens in the macula (the central area of the retina), it can affect your central vision.

Another visual annoyance that I have to deal with on a daily basis is floaters. Floaters are little spots, specks or thread-like strands that float about in your field of vision. They move as your eyes move and seem to dart away when you try to look at them directly. They do not follow your eye movements precisely, and usually drift when your eyes stop moving. For most people, floaters are part of the natural aging process and simply an annoyance. However, floaters are much more common in people who are very nearsighted or have had eye operations. I have had to deal with floaters my entire life and the amount and frequency fluctuates on a daily basis.

Levels of Visual Impairment

Here is an example of the variations in the use of the term “visual impairment” from the World Health Organization Levels of Visual Impairment:

Moderate Visual Impairment:

  • Snellen visual acuity = 20/70 to 20/160

Severe Visual Impairment:

  • Snellen visual acuity = 20/200 to 20/400
  • OR visual field of 20 degrees or less

Profound Visual Impairment:

  • Snellen visual acuity = 20/500 to 20/1000
  • OR visual field of 10 degrees or less

A Snellen chart is the eye chart that you use at the doctor’s office to measure visual acuity. This chart is referring to the vision in your better eye with your glasses/contacts on. Low vision is technically used to describe someone who has a reduced level of vision that cannot be corrected even with the aid of glasses or contact lenses, and it interferes with the performance of daily activities such as reading or driving. So, if you can see 20/20 with your glasses or contact lenses, you do not have low vision.

I have personally faced a lack of empathy for low vision issues throughout my lifetime.  When I was a child, I wore glasses and had a corrected vision of 20/80.  That means that, at that time, I had moderate visual impairment.  However, I was not given any assistance in school. In fact, many times I had to fight for the right to sit at the front of the classroom so that I could see the board.

When I was 15, I got a job and purchased my first pair of contact lenses, which improved my vision to 20/50.  I would classify that as “low visual impairment.”  Although my vision loss affected me in that I could not read certain signs or participate in certain sports or vision related activities, I was able to drive and manipulate my environment effectively. At that time, I still had my peripheral and night vision.

In college, I received no assistance because of my vision even though I requested it several times. Because of this, I often missed assignments or information that was written on the board.  I was told that if my vision had been worse, they would help me, but at the level that I was at, I was expected to help myself. I was told that it would be my responsibility to ask my classmates for any notes and information I may have missed. Only once during graduate school, when I was having trouble driving to class in the dark, did I meet any professors who empathized with my plight and offered helpful suggestions.

Since my teens, my vision has fluctuated between low to moderate visual impairment due to changing conditions such as cataracts, lens replacements, retinal surgeries, etc.  Currently I have low visual impairment, but visual impairment is not only determined by the reading on the Snellen chart, but also by other factors that affect the usability of your vision. I recently tested at 20/30 for the central vision of my better eye, but I have very little peripheral vision, missing areas of vision due to retinal atrophy, wavy distorted vision from scar tissue on the retina, and no night vision. So, I have usable vision with which I can read and write, use my computer, and take care of myself and others, but my vision loss does affect my daily activities.

Medical Complications

Due to my genetic eye condition, I have had a retinal detachment in each eye, first at the age of 15 and then again at the age of 47.  Both times, I had a vitrectomy, which is the removal of the vitreous gel, and a gas bubble was inserted. I had a silicone band placed around my right eye to hold the retina in place and I had laser surgery to reattach the retina in the left eye.  In my thirties I had a surgery to cut out part of the right eye’s silicone band which was deteriorating and causing pain. I had cataract surgeries in both eyes while I was in my mid-thirties, in which the lenses in my eyes were replaced with artificial lenses. I have since had YAG laser surgeries in both eyes to clear scar tissue from those same artificial lenses.  Ultimately, I know that the eye condition that I have is degenerative and can eventually lead to blindness.

Challenges I Face

Some of the low vision challenges that I face are:

  • No transportation (as I cannot see well enough to drive), so I can only attend things that my husband can drive me to.
  • Feeling isolated, because most people want to socialize with people who are independent and able to go out and meet them; they don’t want to have to come pick you up.
  • Feeling isolated, because of the challenges of interacting socially when you cannot pick up on all of the visual conversational cues to laugh or make eye contact at the right time.
  • Frustration, at the lack of empathy that you face because people often expect that if you are not totally blind, then you should be able to function the same as a normally-sighted person.
  • Frustration, at the lack of understanding from people who do not understand that my vision fluctuates from time to time, and while I may be able to see something on one day, the next day I might not, depending upon my eyes and the environment.
  • Frustration, at not being able to make people understand that lighting affects my vision in various ways. A bright lamp in a room or an open window can cause temporary loss of vision due to glare, contrast, inability of my eyes to dilate, constrict and adjust quickly to changes.
  • No night vision, so that unless someone guides me I have difficulty getting around after dark or in dark buildings such as theaters or churches that are not well-lit.
  • Struggles with cleaning, because I cannot see dirt and cobwebs very well.
  • Struggles with crafts, or anything that requires fine detail work.
  • Problems with dropping things, bumping things, and locating things I’ve dropped.
  • Struggles, with the inability to read for very long at a time, because only one of my eyes is clear enough to read. This means my eyes tire quickly and I get headaches after reading or looking at my computer for very long.
  • Having a floater appear in my vision while I am trying to work or do something, or seeing one suddenly and thinking that it is a bug or some object I must avoid.
  • I cannot see, or recognize who people are when I meet them, if they are not standing close or in a well-lit area. Some people seem to take offense if you don’t recognize them right away or from a distance, or they are insecure and impatient and think that you do not wish to interact with them and they will walk away.
  • When crossing a busy street, I do not feel confident that I can see all of the oncoming danger and protect myself.
  • When walking through a mall or crowded area, I often bump into people or things because I cannot see everything that is going on around me.
  • There is no easy way to identify yourself as a person with low vision. With each new person that you meet, you have to explain everything all over again.

In Conclusion

One of my biggest frustrations is dealing with people who believe that you are just whining and complaining when you try to explain to them about your low vision and the challenges that you face, hoping that they will want to understand, but realizing that most of the world doesn’t really care unless it affects them personally and that it is easier for them to just walk away from someone with low vision and find someone with normal sight to be around.

Some days I feel like celebrating my low vision because it is a unique part of who I am.  Other days, I am angry at having what feels like a more difficult life circumstance than others.  It all comes down to the fact that you can’t change some things, and it is best if you simply remember to be thankful for what you have and make the most of it. Talent and luck precipitate success far less often than motivation. If you have read all the way to the end of this, you are an exceptionally caring and curious person. I hope that you know a little bit more about low vision now than before you began, and if you have low vision, I hope you know that you are not alone in this journey.

6 comments

  • Shai

    Thank you so much for putting this post together! It really helps me understand the breadth of the challenge of low vision and makes me all the more impressed with your passion to write! I especially appreciated the list of specific challenges. Those concrete examples in so many areas were a vivid reminder that someone else’s world can’t be explained in a diagnostic word or two. The experience plays out in so many ways. Great and generous post.

  • shelia shackelford

    Donna this was very informative. Praying

  • Thank you, Donna, for this information. It is very enlightening and helps me understand you and others with low vision, and I really do want to understand. While there are those who really don’t care, many do care if only they understood. It’s hard sometimes to put oneself in another’s shoes, and so often we are too busy and too selfish to take the time to try to understand. Thank you again for helping me understand. Hugs.

  • I do not have low vision but I have always struggled with nearsightedness. Knowing that other people can be so callous toward anyone who is suffering from something that they personally do not understand has to be difficult to deal with. This is especially true when the problem being dealt with is not so obvious for people to see. Counting our blessings from God is much better than giving up–and you do this so admirably. Thanks for the excellent discussion and always know that we love and appreciate you very much!

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