Monday Motivation: How?

Friends

Over the past few weeks, I have shared some behind the scenes information on the writing and publishing of my new book, “Rough Places Smooth: Moments In A Journey Through Blindness.” I have shared my reasons for writing the book, but it occurs to me today that you may have another question that needs answering, and that question begins with ”How?”

 

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All the days ordained for me were written in your book before one of them came to be.

Psalm 139:16b – NIV

 

I imagine that you may have a few questions circling around in your brain as you read these Monday messages. For those of you who don’t know me personally, and even some who do,you may be asking, ’If Anita is legally blind, how did she write the book?” It’s a great question. If I cannot see, then how did I physically manage to put the book together? That’s a question that begs yet another question, “how much can I see?” Well, the answer is, of course, another story!

 

The term ”legally blind” is a confusing descriptor because it refers to a whole continuum of visual impairments resulting from a host of eye-related diseases. Although quite rare, there is a multitude of retinal degenerative diseases with symptoms manifesting anywhere from infancy through middle adulthood. Other diseases affect older adults. Each disease has its own pattern and rate of progression, and each impact visual function in different ways.

 

The vast majority of people assume that the term “blindness” refers to “lights-out darkeness,” but that is not the case. Some diseases impact central vision, while others result in peripheral visual field loss. Some diseases progress rapidly, while many spread more slowly.

 

Retinitis pigmentosa (RP) is a genetic retinal disease that causes the death of light receptors in the peripheral visual field in a typically slow, progressive manner. It does cause damage to central vision, but this is often a later result. The challenge with degenerative retinal diseases like RP is that the disease both presents and progresses differently in each individual. It seems that no one’s journey is exactly the same.

 

When I was first diagnosed with RP, my central vision was quite normal and correctable to 20/20 with glasses. I also retained healthy far peripheral vision. The problem was in the in-between. There was a large ring of mid-peripheral vision that was damaged, or in some places, completely absent. My good central vision allowed me to read, write or even thread a needle without a problem. Yet, I could miss a step, bump into a table, or miss a child riding a bicycle on the side of the road while driving. It was easy for me to trip and fall, and unfortunately, hazardous for me to drive.

 

Thankfully, the disease has progressed quite slowly. My eyesight remained fairly stable with only small changes for more than 15 years, before the visual discrepancy between my right and left eye caused significant double vision. Even then, my “miracle-worker” physician was able to maximize my visual function with a prism in my glasses, extending my work life for six more years. The damaging effects of the disease has now turned inward, gradually claiming my central vision. Faces, photos, and reading are all but lost to me now. However, in an unusual pattern of RP progression, I still maintain a large, quite healthy, ring of far peripheral vision. This allows me to see the majesty of a sunrise or the bright bloom of a flower out of the corner of my eye. It is not normal vision, but it is indeed a gracious blessing to be able to identify objects or people as well as appreciate my surroundings. Most with RP lose this part of their visual field early, so it is quite a gift that I can still see blue sky, green grass, and the outline of my loved ones.

 

So, back to your original question, if that is what I can see now, How did I write the book? In the beginning of this writing journey, I could still see my iPad screen with a few modifications to improve contrast and readability. I used a larger bold font and a black screen background with white letters. These enhancements made the text stand out on the screen and reduced my eye strain. I began using the “speak screen” option that is standard on Apple devices. I typed my documents normally, and then let the automated voice read my work back to me. I quickly realized the benefit of this “read-back” feature. Soon, I was playing around with different voices to find one that suited me best. I settled on a South Austrailian voice named “Karen.” Before long, Karen and I became best buddies.

 

From the moment of my retirement, I had set a goal of learning the ”Voiceover” application on my iPad. This feature allows visually impaired people to listen to the letters and words they are typing as opposed to seeing them. Voiceover is one of the standard accessibility features on Apple devices. It’s an amazing tool, but it isn’t easy to learn.

 

Voiceover utilizes three different voices to guide the visually impaired in typing a document. One voice reads each letter as it is typed, while a second voice reads the completed word once the space bar is tapped. Voice #3 is used to indicate the delete option, the voice reading each letter as it is deleted. By using the left or right arrow keys, Voice #1 will read individual letters to assist with editing. Voice #2 will read entire lines of text when the up and down arrow keys are accessed.

 

Sounds complicated, doesn’t it? It is complicated, and it took a lot of practice to become proficient at using this tool. I dabbled with it for a long time before I finally mastered it. As long as I could still see the iPad screen, I used my eyes to type, but that grew harder with time. Parts 1 through 4 were written while I could still see what I was typing. Yet, by the time I reached Part 5, that strategy wasn’t working well. I didn’t have the option of navigating the screen visually. I was forced to make a change in the way I used my devices. Thankfully, I had been taking baby steps before the move was essential, and that helped with the transition.

 

I began teaching myself how to use Voiceover. It was slow-going, and I cheated a lot by straining to see the screen. As with anything, practice makes perfect. It is a good thing that I committed to learning when I did, because I am completely dependent on Voiceover now. At this point, I can still make out the landmarks on the screen, but I can no longer read anything. ”Karen” has become my constant companion, and her guiding voice helps me navigate wherever I want to go. By necessity, I have become a ”pro” at this! 

 

I am so exceedingly grateful for these accessibility features that open up this window on the world for me. I often think that just a few years ago such tools were not available to the visually impaired. Certainly, I am limited on navigating some websites and applications. Editing is done one letter at a time which requires a lot of patience, and sometimes leads to some punctuation or capitalization errors. I abhor the periodic updates that often change the way applications function. My vision issues make it more of a challenge to figure those new features out, but it helps immensely that I live with an IT expert! He does a valiant job helping me sort through my struggles. I am incredibly thankful for Siri as she helps me text, call, and even add items to my calendar.

 

I function differently now in so many ways, but I still function. I can still appreciate the beauty of the visual world even if my view is limited. This handy tool at my fingertips allows me to send this note to you. Isn’t our God good? He continually makes a way where there would seem to be no way.  

 

PRAYER

O Gracious Lord, thank You for leading us through the hard things of this life. Some days are easy, others are not. Yet, one thing is certain, we never walk alone. You are with us and for us. You always make a way even when there seems to be no way. All our thanks and praise to You, O Lord!

In the Loving Name of Jesus, we pray,

Amen

 

Blessings,

Anita

 

-APS 9/19/2022