Chapter 9: Time is Telling
Cane travel is a demanding skill to learn. It can take up to a year to get comfortable stepping into a new environment, walking down bustling streets, and even casually taking a stroll on a pretty day. Mastering Braille is even harder. Even with the right mindset, both these skills can fall apart like chipped nail polish if you don’t reapply what you learn through practice, practice, and more practice. Determination is key, both in thought and in action.
Time is telling. It has a way of creating friction by rubbing against your weaknesses until after awhile you become transparent and seen for what you are. Pearl was scared, and everyone saw her fear progress as her confidence lessened with each passing month. Regardless, Pearl ultimately knew it was up to her to win her independence while losing her sight. Yet, it was a struggle that no one could fight for her, and often Pearl felt very isolated.
After the night of the spaghetti dinner with Dr. Holt, everything kicked into a different gear for Pearl. She fervently worked for the next twenty-three months like an athlete preparing for a marathon. She went on two mini-semester sessions and four one-week youth transition camps at the School for the Blind and Visually Impaired in Houston. While at home Pearl worked with Meredith, her orientation and mobility instructor, twice a week. And Grandma was assiduously homeschooling Pearl to keep her above the curve in her studies. During her free time, Pearl practiced her mobility skills, relying heavily on the campsite walking stick to lead the way.
As Pearl’s sight dissolved so did her openness. She retreated into her darkness. Comments that once she would have routinely mentioned aloud were now repressed. She rarely commented on the day, its beauty or its frustrations. Her mom, grandma, and Dr. Holt found it more and more difficult to help Pearl. She would often make quick and harsh comments to them when they offered their assistance. When Pearl became discouraged with not being able to do something, she would lose her temper and withdraw.
To Pearl, the only thing that had remained untouched were her memories. Everything else, her present and future, were marred by her failing sight. Even still, Pearl went through the motions and learned what was to be expected of someone in her condition: Braille, traveling with a cane (her walking stick), how to dress without looking like a clown, and how to determine how much money she had in her purse, etc. Pearl was uncommonly good at each of the skills and was physically very independent, very independent for someone that had now lost 85% of her vision. Only a small hole of her central vision remained, and what was left was not very clear. Pearl felt as if she were looking through a peephole wearing swimming goggles.
At this point, Pearl is seventeen years old. It is a hot June day, and she is thinking about how her senior year is about to start in August and that her 18th birthday would be celebrated that same month. Two exciting reasons to be happy; yet, both were blaring reminders that her teenage clock was ticking and she would soon be expected to transform into a self-sufficient college student. Being alone scared Pearl more than the thought of her college studies. Even when Pearl pushed her family away, she still knew they were within ear’s shot if she needed them. At college, her family would not be within running distance, within saving distance. Pearl thought for sure she would suffocate in her darkness once she moved out of the house to attend college. She had yet to discuss her plans for college with anyone, even though her mom and Grandma asked at least once each month. That was a conversation she was avoiding. Pearl had gone through enough adjustments in the last several years, and she was not ready to think of preparing for another.
Thanks to Dr. Holt and Meredith, for almost two years now Pearl has collected some very helpful low-vision devices. Her favorite is her “talking computer.” This computer scans text and converts it to voice. Pearl has become very proficient at navigating her computer. She no longer uses a mouse since moving a cursor became too difficult; rather, she uses keyboard commands. Also, Pearl has a ‘talking’ alarm clock and wristwatch, jumbo number playing cards, Braille clothing dividers for her closet, felt pens especially made for black bold-lined notebook paper, and numerous hand-held magnifiers in all shapes and sizes.
Using a special computer magnification software that enlarges the words on Pearl’s computer screen by 3x, Pearl has been journaling her thoughts through each of the stages of her vision loss. Some stories are sad, some are funny, and some Pearl found the humor in only months after they were written. “I can be so dramatic,” Pearl thought to herself as she looked through past entries.
One of the entries describes a night that her mom and Dr. Holt took her to dinner at a fancy Mediterranean restaurant. Her mom and Dr. Holt were celebrating their one-year dating anniversary. The restaurant was dimly lit, and the tables were tightly packed. It was the first night Pearl accidentally spilled her water glass onto the restaurant floor. The glass shattered and everyone within reach got their legs wet. At that time Pearl’s peripheral vision was almost completely gone and she, consequently, did not see the waitress place her water glass to her right side on the table. Lost in conversation, Pearl swept her hand sideways and toppled the filled glass to the floor. She was so embarrassed that she barely touched her food and didn’t order dessert. Since then, she counted three other times in her journal that she spilled her drink at a restaurant. Through trial and error, Pearl learned how to scan her table to minimize the possibility of further accidents and embarrassments.
If it wasn’t beverage glasses, then it was flower vases, salad bowls, silverware, or someone else’s elbow; whatever was lurking in her side vision, Pearl collided with on a regular basis. This adjustment period was torturous for Pearl. She seldom wanted to leave the house for fear of embarrassing herself and her family. When Pearl slipped, fell, or scrambled to regain her balance, she questioned whether it was her eyes that caused her misstep or her clumsiness. After a point, there was no question. Her eyes were failing her.
This failing was never more apparent than when Pearl went to the movie theatre with Grandma. Tired of the study routine, Grandma wanted to break up the day with a little fun. The Texas heat proved too much to do anything outside, so Grandma recommended they go to the show. There was a new movie Pearl wanted to see, so they both agreed to put the books down and trade them in for a matinee movie ticket. With one hand full of popcorn and the other wrapped around a large soda, Pearl cautiously made her way behind Grandma up the steps in the darkened theater. Grandma offered to carry Pearl’s snacks; however, Pearl thought she could manage if she simply focused intently on each step, one by one.
Due to Pearl’s poor depth perception, she misjudged the distance between the fourth step and the fifth step. Pearl tripped, and her shin hit hard on the fifth step. Her wrist slammed into the outside chair, and her soda went flying onto Grandma’s foot. Popcorn filled the stairwell like party confetti. Mortified, Pearl heard kids laugh and parents quickly shushing them up. Grandma helped Pearl to her seat. An attendant got Pearl another soda and popcorn. While Pearl sat, her skinned burned from humiliation and bruising. As the movie started, she was thankful for the veil darkness provides. In silence, Pearl cried slow, heavy tears.
But the worst experience was the time her mom took her shopping at Brighton Mall to buy Christmas gifts for Grandma and Dr. Holt. This event occurred within the timeframe of Pearl’s struggle from knowing she needed her walking stick in public to not taking it because she did not want the attention it brought. She had gotten into the habit of taking her stick for walks around the block and even to the grocery store at off times with her mom. However, she had never taken her walking stick to a traditionally overcrowded place. Pearl was too self-conscious to attempt to maneuver within the Christmas crowd with an oddly painted stick leading the way.
Pearl, instead, decided she would lightly hold on to her mom’s elbow. Upon entering the mall, she heard the booming sounds of familiar Christmas carols. Knowing from past years that a gigantic Christmas tree adorned the center of the mall floor, she yearned to see the glistening golden lights and red and green decorations. Pearl asked her mom to take her to the tree she so vividly remembered signifying the start of the Christmas season. The walk to the tree was ghastly. Pearl was bumped more times than she could count. She felt the wind slap her face as fast-moving men and women grazed past her. Bystanders’ cologne and body odor agitated her nostrils without warning, and voices of distracted children frightened her. Pearl thought for certain she would stumble, fall, or slam into a child. Her fear dulled her sense of direction, and she felt helplessly lost in a sea of indifference.
Finally at the tree, Pearl could make out a few ornaments but nothing more. Her hand felt the plastic branches. Christmas never seemed so artificial to Pearl as it did that year. It was hard for her to imagine Christmas without seeing it as she once did. It was like looking at a painting too close. You just see paint daubs, small details of a single sector of imagery. But you never fully appreciate the view unless you step back and take in the entire painting from top to bottom, side to side. When Pearl approached the gigantic tree, all she was able to take in were the distorted details within a snippet of its entirety. She experienced Christmas in crumbs, like a beggar scouring the bottom of an empty brown bag trying to satisfy a full appetite.
These journal entries and much more chronicled Pearl’s metamorphosis from sighted to nearly blind. From complimenting her mom’s new dress to barely recognizing her mom’s slender face; and from wearing make-up with confidence to not even wanting to attempt to put on the palest pink blush - these were Pearl’s daily stories. Trying to be a teenager had turned into a sidebar event. That was until her walking stick decided to lead Pearl in another direction.