Friends
As we begin this new year, here is another installment in my “Living With Blindness” series.
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How has my vision loss progressed?
I am asked this question often. It is difficult for people to understand the vision loss associated with my retinal degenerative disease, retinitis pigmentosa (RP). Often, people think of blindness as “lights-out” darkness, assuming that the person cannot see anything. However, quite to the contrary, persons with RP and similar retinal diseases typically retain some level of useable vision. It is just not the kind of vision that is easily understood.
What was my vision like in childhood?
Since RP is a progressive disease, vision loss may be virtually unnoticeable in the childhood and young adult years, but becomes more obvious as the person ages. My experience certainly followed that type of pattern.
There were no clear signs of the disease during my childhood. I was never skilled at games involving catching balls. Perhaps the presence of small visual field losses might explain that, or more likely, I can chalk it up to being a natural klutz! I do recall a strong attachment to my night-light at bedtime, but I credited that to being a bit of a night-time “nervous Nellie!” By age 10, I required glasses for reading and seeing the chalk board, but there was nothing particularly unusual about that.
Were there changes during adolescence?
Yes, but the warning signs were not obvious. In my teenage years, I noticed more difficulty seeing in the dark. From the outset, I never felt truly comfortable driving at night. I functioned well driving in familiar areas, but night driving in less familiar places gradually became more uncomfortable. I readily relinquished my car keys to my then-boyfriend and later-husband Eric in order to avoid driving in the dark. I never thought much about this, but considered it simply a matter of preference.
I loved going to the movies as a teenager, but I recall straining to see when I first entered a movie theater. My husband recalls that I consistently grabbed his arm for support when we entered the theater, but usually did not require any assistance when exiting the movie. Clearly, my night vision was declining over these adolescent years, but I brushed off these signs as benign personal quirks.
How was my vision in my 20s?
My visual field losses were virtually unnoticed as I entered my 20s. The disease had progressed at such a slow pace over the course of my lifetime that I did not even realize there were any issues. In those early years of my nursing career, I worked night shift and functioned without noticeable difficulty. I always required a flashlight to enter patient rooms and perform nursing tasks, but that was by no means unusual. I had no difficulty with fine motor tasks, although I gradually noticed some trouble seeing the heart monitors from what I thought was a reasonable distance. At age 25, I had a regular eye exam and received my first set of contacts to improve my mid to far distance vision. No abnormalities were noted at that point, but I don’t recall having my eyes dilated during that exam.
What changed in my 30s?
Looking back, I am quite certain that my vision declined rapidly during my pregnancy at age 30. By age 33, I began to notice odd discrepancies that I could not explain. I found myself bumping into obstacles that should have been apparent, particularly things positioned low to the ground like my son’s little red rocking chair. I had difficulty locating paper clips or pens I dropped on the floor. Some fine motor tasks became challenging at work, such as untangling IV lines or passing medications. I had several fender bender car accidents that seemed odd since I was adamant that I wasn’t following the other vehicles too closely. Night vision became increasingly difficult, and night driving made me very uncomfortable, particularly in unfamiliar places or on rainy nights.
At the time of my diagnosis of RP, it was explained that my vision loss followed the pattern of a “mid-peripheral scotoma.” Essentially, I had lost significant vision in the middle part of my peripheral visual field, the losses forming a ring of missing vision similar to that of a donut. My central vision, the area described as the donut hole, remained quite good, and was easily corrected to 20/20 with glasses or contacts. My far peripheral vision,the area outside the donut-shaped ring of missing vision, was also healthy and functioned normally.
It still amazes me that I didn’t realize that I had a problem sooner. Since I had good vision in both my central and far peripheral areas,my brain simply filled in the missing portions of the picture without alerting me to the problem. Without being aware of it, I was constantly moving my eyes up and down, and side-to-side,to pick up the missing sections of the scene in front of me. In other words, my eyes and my brain were compensating well for the problem.
As I lost more and more vision in the mid-peripheral area, the compensation strategies began to fail, and I started displaying symptoms of the disease. My ophthalmologist explained that objects or persons inside that donut-shaped ring of missing vision would not be seen. Driving was especially hazardous. A child on a bicycle or another car could appear inside that circle of missing vision, and I would not notice them until it was too late. Hence, I had to stop driving immediately after my 33rd birthday.
As I moved through my 30s, my night vision worsened significantly over a relatively short timeframe. Things I could do easily in the daytime or in well lit situations became very difficult in dark environments. I also had to watch out for obstacles that might cause me to trip and fall, particularly small hazards positioned low to the ground.
For many years, my driving restriction and poor night vision were the only outward signs of my vision loss. I could read, write, and use the computer with only minor adjustments. I moved about with ease, although curbs, steps and low obstacles could pose a hazard, particularly in unfamiliar areas. I had normal color vision and could see faces, hair color, and photos. I had no trouble watching TV or movies, and could easily view landscapes or see the detail of a flower bloom.
I was able to function normally at work, although I no longer provided direct patient care as a nurse. In the months prior to my diagnosis, I became increasingly perplexed by my difficulty performing basic nursing tasks. Once the diagnosis was made, the thought of potentially making a mistake and hurting a patient unnerved me, and I decided to pursue another nursing position that did not require direct bedside care. .
How did the disease progress in my 40s?
As the years progressed, my night vision continued to decline requiring assistance in dark environments. Trip hazards became more of a problem. Finding the cursor on the computer screen became challenging, and I employed special vision software. Thankfully, I found ways to compensate for the gradual changes, and life went on fairly normally for 15 years. With the exception of driving, I was able to do almost everything I chose to do.
My left eye has always displayed more vision loss than the right. By age 48, the double vision associated with this discrepancy became disabling. My low vision specialist was able to insert a prism into my glasses correcting most of the double vision.
How did my vision change in my 50s and early 60s?
By 2011, I began using a white cane to assist me with mobility. The cane allows me to pick up obstacles in my path or navigate steps safely. It also helps with night navigation. By 2014, the double vision became so severe that I could no longer read printed material. Writing and other fine motor tasks became challenging. Previously unaffected activities like watching TV became difficult. While I could still see the computer, I struggled to navigate the screens even with adaptive vision software. The challenges in the work environment necessitated my early and unplanned retirement at the age of 54.
I lost the central vision in my left eye in 2016, and in my right eye in 2021. I can no longer use a standard computer, and instead employ the accessibility features on my Apple iPhone and iPad. Photos, graphics, signs, and any type of text material are lost to me now.
To my eternal amazement, my far-peripheral vision remains healthy. I am able to pick up objects and images using this outer ring of vision. It is not clear, focused vision, but it is quite useable and helps me navigate my surroundings. Faces are challenging now, but at just the right distance, I can still recognize facial features and hair color, and sometimes even expressions. My color vision is not as good as it once was, but I can still match up my clothes or decorate my house, although I often seek visual confirmation from friends just to be sure. I see best outdoors where the lighting is brighter, and I can still appreciate landscapes, flowers, and trees. Again, it is not clear focused vision, but it is vision nonetheless.
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Over the 31 years since my diagnosis, the disease has progressed slowly. For this, I am eternally grateful. The brain is an amazing organ and the gradual deterioration of my vision has allowed me to form effective compensatory strategies that have offered me a full and rewarding life. I have to do things differently from normally sighted people, but, for the most part, I can still do the things I enjoy. Certainly there have been losses, but God has supplied my every need, and I am forever thankful.
Want more information?
For more detailed technical information on the disease process as well as updates on the clinical research regarding treatment options, check out The FoundationFighting Blindness at www.blindness.org
For excellent video and podcast offerings on coping with progressive vision loss, explore the resources at hadley.edu: https://hadleyhelps.org/
For real-life insights into the journey through progressive vision loss, check out my inspirational memoir, “Rough Places Smooth: Moments In A Journey Through Blindness” by Anita Peden Sherer. Now available on Amazon in paperback or Kindle ebook.
-APS 6/14/2024
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NOTE: these posts and references are intended to share helpful information and personal insights about coping with progressive vision loss. This content is not intended to replace appropriate medical advice. For specific concerns related to your personal vision, please consult your doctor.
-APS
Want to read more of Anita’s story?
GRAB A COPY OF
Rough Places Smooth:
Moments in a Journey Through Blindness
by Anita Peden Sherer
NOW AVAILABLE ON AMAZON
AS PAPERBACK AND KINDLE EBOOK!
Faith Beyond Sight 