Listen to the Quiet

It’s a Friday afternoon in late summer. I’ve opened the windows and doors, because finally, the air conditioning is not running. To be more accurate, it is not roaring. I’m the biggest fan of air conditioning there is, but I cant stand the noise mine makes. Whenever it shuts off for a while, it’s like a relief from a headache.

I have to turn the sound up on the TV or the radio or my talking book player. I have to shut the door to the family room in order to hear the TV at all, because the AC motor is right outside the family room door. As I age, I find that noise bothers me more and more. I sometimes walk right back out of a restaurant if the noise level is so high that I can tell its going to be impossible to have a conversation with my companion. I hate yelling across the dinner table, and I can’t read lips. High ceilings and bare floors are trendy for some reason, giving the illusion that the place is very popular, but give me low ceilings, carpet on the floor, and cozy booths any day. My world is so filled with sounds that sometimes, I need a little vacation from it all, and I’ve found the perfect place, right in my own back yard.

On this rare summer afternoon, when there is not a single air conditioning running in the neighborhood, I sit out on the patio and drink in the quiet. Today, there are no lawn mowers roaring either. The cloud cover or the smog or whatever is such that the traffic from the freeway is masked as well. Occasionally, a crow’s call splits the air. Once in a while, a cardinal announces his presence. A neighborhood dog barks, but only briefly, as if he knows that nobody cares, so he might as well go back to sleep. Two Canadian geese interrupt my reverie with their unlovely honks, as they wing their way across my back yard, but I find myself smiling at their amusing conversations with each other. Look down there! We saw that dog on the way to the pond, and he’s still in the same place. Should we stop and harass him? How much longer til lunch?

All the while I’m drinking in what at first I thought was silence, I begin to notice subtle sounds that are the backdrop to a quiet summer day. Millions of insects, cicadas or locusts are doing their mating thing. The crickets are doing the old-fashioned kind of tweeting. Later in the day, the Katie-dids will come out to serenade the world. It’s a pleasing sound to me, sitting here in my well-protective screened in porch. It’s so relaxing that I find myself dozing. I think maybe I should do some reading out here, or listen to the newspaper, or do some writing, or make some phone calls. Maybe I should think about what I need at the grocery. Then I remember that I am retired, and I have plenty of time to do all that. It’s high time I take the advice of mental health experts . Sit there. Be in the moment. Just be.

A Disturbing Perception

I was curled up with a pretty good book, when I came to a chapter that made me sit up and yell, “What? I can’t believe I’m reading these words!” The book was “Please Look After Mom “ Translation Copyright 2011 by Kyung-Sook Shin.

The story takes place in Korea, and in this particular passage, the young woman, who is a writer, is telling her mother about a very weird experience she had. She talked about her visit to someplace called the Braille Library, somewhere in Korea. They had contacted her and told her they were planning to publish her latest book in Braille. She knew nothing about Braille, “except that it was the language of the blind.”Please note the quotation marks because these are the author’s words, not mine. If you want to push one of my hot buttons, then call Braille a language. It is not a language. Read on.

They were asking for her permission to recreate her book “in a language only they could communicate through. She really said that. It sounded like she was talking about aliens, not people who were blind. Read on. They invited her to come to the library on something called “Braille Day,” and speak at an event about her book. They presented her with a copy of her book in Braille. The description of how she felt when she opened the book and saw an “infinite number of dots on white paper” was a bit melodramatic, but it illustrated the complete and utter amazement people experience when they encounter Braille, especially when it is something they themselves have created.

When she stood at the lectern, she felt her back stiffen. She was terrified. She didn’t know what to focus on, speaking to 400 people who could not see her. She didn’t know who to look at or how to start talking. Some people had their eyes closed. Some wore dark glasses. Some looked straight at her, but since she knew they couldn’t really see her, she felt they were looking straight through her. She wondered, “What would be the point of talking in front of these unseeing eyes.” Then when they began to ask her questions about herself, she understood that they could think, have opinions, and have life experiences. They asked about a book she had written on travel. One man said traveling was his hobby. She was stunned. She thought, “Where would a blind person travel?”

I could almost forgive her for calling Braille a language, because it is a common misconception, but the thought of a writer, who was so freaked out about an audience made up mostly of blind people was dismaying to say the least. Does this mean that when we have conventions of ACB, the American Council of the Blind, our speakers are terrified of us? Do they think of us as freaks, with our half closed eyes, fully closed eyes, eyes that don’t focus, and dark glasses? Is this why some people who meet a blind person for the first time are struck speechless? Suddenly, I felt diminished to a non person’s status, that of being part of a population of weird beings that have their own language that only we can understand.

If you read this book, and you don’t have this same reaction, or if you do, I’d love for you to leave a comment. I may be over-reacting, but then again, I might have just had my own eyes opened to a harsh reality.

Hearty Flowers

Are you “keeping up with the Joneses?” I haven’t heard that expression for a long time, but it occurred to me recently that is exactly what I had been doing, without realizing it.
When I became a single, divorced, home-owner in 1991, I was suddenly saddled with not only the upkeep of the house, but also of the yard. I am not a gardener, by any stretch of the imagination, but for some mysterious reason, I thought I needed to make a great effort to maintain the appearance of the back yard as well as the front. I bought hanging Impatience plants for the patio and dutifully watered them every day, that is until I put my hand up there one day and discovered a baby bird in the middle of the plant. I bought pots to grow tomatoes in and valiantly tried to reward myself with big luscious tomatoes, that is, until I finally admitted that I didn’t really like tomatoes. I paid someone to dig up the front flowerbed and fill it with new soil, and my friend Eve took me to the garden store and helped me pick out flowers that I might enjoy. Then she helped me plant them and make a chart of which flower was planted where. But then it was up to me to water them, weed them, pinch them back, and replace them when they died anyway. I bought window boxes and tried a variety of flowers that wouldn’t require a lot of attention, but they all required watering. I bought whiskey barrels for the end of the driveway, and filled them each year with a different variety of flowers, but when the barrels themselves needed replacing, Twice, in addition to the flowers, I called a halt to this whole charades.
“Admit it,” I said to myself. “You hate gardening. Why are you doing this? Is it for your neighbors to enjoy?” Well, yes, that’s exactly why. I wanted to have a yard that looked well-groomed and cared for. I didn’t want it to stick out, like, that’s where the blind lady lives. That’s why it looks so bad. She can’t see how terrible it looks.
Meanwhile, I had been paying someone to mow my grass, paint the trim, clean the gutters, replace the roofing, and on and on. Oh, the joys of home ownership. When I got sick of weeds growing up through the cracks in the driveway, I spent my savings and invested in a new driveway, patio, and a front patio that would cover up the old flower bed. Yes, I paved over the petunias, and I’m very glad I did. The window boxes remain, but today, they are filled with beautiful flowers that are finally starting to fade, after two summers. I bought them at Joanne’s, and I call them hearty flowers. You can’t tell they’re not real, that is, until you notice that they are a little too beautiful and a little too perfect. But they bring color to the front patio, and they make my friends smile as they comment on my beautiful hearty flowers. The only attention they require is to replace them with hearty fall flowers, and then hearty Christmas flowers. I buy replacements at the end of the season in order to catch the sales. I do have to buy potting soil though, so they have something to anchor them. I just hope my neighbors don’t see me adding soil to the window boxes. Then they will surely think I’ve gone off the deep end.

A Memoir of a Perfect Summer Day

As summer draws to a close, you might reflect on your favorite outing, evening, or moment of this past season. Go ahead. Think about it. I’ll wait.

My turn. Because this past summer has not been especially fun, I like to recall happier days, particularly my teenage years.

A summer day when I was about 15, is etched on my memoir as one of the happiest in my life. I went with a group of 3 or 4 friends to Coney Island near Cincinnati. Its Sunlight Pool was known as the largest swimming pool in the world. For the price of a day pass, you could swim all day, ride the rides on the midway and dance at Moonlight Gardens, and that’s exactly what we did. My day started with boarding a city bus and traveling across town to Ruth Ann’s house. I knew Ruth Ann from the dance studio where we studied tap, ballet, and modern jazz. From there, she and her friends, two boys about our age, and I took the bus the rest of the way to our destination of adventure. This was a really big deal for me, and it must have taken a lot of courage for my parents to allow me to do this on my own.

I have snapshots in my head of the fun I had all day, just as if I had had a camera. There I am, paddling out to the concrete island and posing as only a 15-year-old girl can do. There I am splashing the boys, standing on my hands in the water, and practicing diving off the side of the pool. There I am standing by the railing at the deep end, cheering on my friends as they jumped or dived off the low board, wishing I had the nerve to try it myself. There I am watching, with awe, the really brave kids go off the high dive. We spent hours in the pool, and I remember how delicious it was to still be there when the crowd thinned out about dinnertime, and I didn’t have to go home.

I can remember sitting at a picnic table, munching on French fries in the late afternoon sun, as if it were yesterday. Even at the age I was then, I was acutely aware that I was doing something that was typical of kids my age. My parents weren’t exactly overprotective of their visually impaired daughter, but I was constantly pampered, praised, and preened for perfection. This day, like no other, I was just a kid having a day of summer fun. It was a feeling of liberation and of belonging at the same time. I belonged to the elusive club of ordinary teenagers who laughed, flirted, gossiped, strutted, and enjoyed just being alive.

When the sun began to set behind the roller coasters, we went to our respective locker rooms, and Ruth Ann and I took showers, washed our hair, and set big fat rollers in our hair and used the high powered hair driers. Out came the sun dresses and perfume, and after about an hour, we were ready to cruise the midway and eventually enter the grownup world of Moonlight Gardens. The boys we were with were not boyfriends, but they would do as dance partners. That day might be considered a “coming of age” day without the sex and drinking that you ordinarily think of with that phrase. Or, you might say it was a “coming out” party for me, coming out of my well protected shell. It was proof to myself that I wasn’t so different after all.

This is the way we wash our clothes.

When someone says something patronizing to you, don’t you just want to growl back at them? Or are you one of those angelic people who manage to smile and ignore the insult? I’m so glad I have this blog, so I can express the outrage I feel when someone says to me, “I think it’s so wonderful that you can live on your own and take care of yourself.” Give me a break! Do they actually think that most people who are visually impaired need a caretaker? Most of the blind people I know ARE the caretakers in their families.

I was married as a visually impaired young woman, bore two children, kept house, did the grocery shopping, the cooking, and the laundry. Yes, I changed the babies’ diapers myself. Yes, I bathed them, dressed them, entertained them, taught them, helped them with their homework, and all the other things fully sighted parents do, except drive them to ball games or band practice. My sighted husband took care of things like that, and when he was tied up with work, I had to make transportation arrangements for them, until they were old enough to do that themselves. Now that the kids are grown up and on their own, all I’ve had to do is take care of myself and my guide dogs. It’s been a piece of cake, except of course, for the transportation part, and even that is working out okay for the moment.

Now that my mother is in assisted living, my life has not only become a little more complicated, but also filled with more homemaking duties. For instance, once a week, I carry her laundry home, wash it, and carry it back to her the next time I visit. Laundry service is supposed to be provided, but I’ve been warned that it’s best to do it yourself, because they’re not always great at getting the right clothes back to the right people. The grocery shopping has become a little more complex, because I’m not only buying what I need, but also what my mother would like to have on hand in her apartment, even though meals are provided. This means I have to make sure she has fresh milk, so she can have cereal some mornings, and cookies and snacks, for when the meals are inedible, and she returns to her apartment hungry. Because she complains on a daily basis about the poor quality of the food, I take dinner to her once a week, so she can have at least one meal that she enjoys. I usually make it myself at home, then carry it in an insulated bag, if it’s a salad, or in a dish that can be heated in the microwave. She is always very complimentary and grateful for my efforts. I brought her some homemade peach pie yesterday, and you would have thought I had brought her a feast. I take care of paying her bills, filling out the endless forms, making her doctors’ appointments, and making sure her needs are met. In other words, I don’t do any more than anybody else, but I don’t do any less. Thank God I’m not the helpless blind person that so many people think I should be. I do know a couple of blind people who do live in an independent living situation, but it’s not their blindness alone that has put them there. They have other issues. I am blessed to have all my other senses, so I can lead a mostly normal life.

Back to the matter of doing the laundry. Thanks to the laundry detergents that work in cold water, I throw all the colors and the whites together, so there’s no stress about keeping them separated. But don’t tell Mom. My machine is marked with dots and Braille or a product called HighMark. No, the machine does not come this way. I marked it myself with the help of probably my daughter. Periodically, I have a trusted sighted friend go through my closet to check for stains or worn-out-looking garments. And speaking of stains, I’d much prefer that you tell me if I have a spot on my blouse than to go around all day with it and possibly wear it again with that spot on it. Remember I can’t feel a stain, so don’t be shy. Just no April Fools jokes please.

What About Pippen?

“What about me? Asked Pippen, who stood in the middle of the living room, wagging her tail at the strangers who had come in the middle of the night. “What are you doing with my mommy? Why are you taking her away? What am I supposed to do here by myself?”

The paramedics were gentle as they probed my stomach. They smiled at Pippen and told her everything was going to be okay. I was off to the hospital for what turned out to be an emergency appendectomy, but Pippen needed to stay behind. Yes, she would have been allowed to come with me, except for the time when I was getting a cat scan and when I was in the OR, but it really would have been awkward. Unless you have a family member or a friend to take care of the dog’s needs for the duration of the hospital visit, it makes much more sense to leave her behind, providing there would be someone to take care of her at home. That night when I was whisked off to the hospital, I was hoping I would be admitted, so I immediately started thinking of how I was going to handle making sure Pippen was fed and let outside, at least for that day. It’s hard to make these kinds of plans, when an appendectomy wasn’t on my agenda. She trusts me though, and while I’m sure she was sad, she also knew that eventually someone would come to rescue her. And he did.

At 7:00 that morning, after I had been admitted and it was determined that I needed surgery, I called my son, and my worries were over. Since Steve has a key to my house, he came home on his lunch hour and took care of Pippen before coming to the hospital to check on me. Then that night, before coming to see me, he took her to his house, where she spent the night comfortably by his side. Who knows what goes through a dog’s mind? We can only guess that she was confused and concerned. She has had to spend the night without me before, so she might have assumed this was one of those times when she wasn’t invited to go, like when I go on a cross country ski trip.

There are dog guide users who would never consider leaving their dog behind, no matter what, if for no other reason than that by law, they are permitted wherever the public is allowed. They also might not have anyone they can ask to take care of the dog. I am so grateful that I did, because over and over that day, I kept wondering what on earth I would do if Pippen had had to come with me. She would have been in the way, in the tight quarters of the examining rooms. She wouldn’t be able to lead me anywhere, i.e. do her job, because I was wheeled around on a bed, and besides, I was in a great deal of pain. Who would have taken her outside? What would they have done with her while I was in surgery?

When I had my thyroid removed two years ago, my daughter was with me. (This surgery had been planned). I brought Pippen with me to the hospital, but Kara took care of her all day while I was in the operating room and recovery. Then she took her home at the end of the day, after Pippen could see that I was okay. Kara said that Pippen was actually a help to other families as they waited for their loved ones to come out of surgery. Pippen has never met a stranger and is always eager to wag her tail and smile at you. Families wer cheered when they saw her sweet little face and happy demeanor.

She was one happy dog when we were reunited after this 32-hour ordeal at the hospital, but she was also a little disappointed. I think she thought it was kind of fun having a sleep-over at Steve’s, and now it was back to work as usual. But dogs thrive on routine, so we’re both glad to be back in the groove.

The Post Surgery Challenge

When I was in the hospital Tuesday for an emergency appendectomy, I found myself wishing over and over that I had thought to bring some wonderful brochures to pass out to everybody involved with my care. They’re called “What should I Say, what should I Do When I Meet a Blind Person?” Why? Because only one person out of about a dozen I encountered hadn’t the vaguest clue how to help me without insulting me. And I’m talking about people in the medical profession. They should know better. In the first place, it should have been noted on my chart that I was totally blind, so I wouldn’t have to explain a dozen times why I needed help in finding the restroom, in signing the forms, or learning where things were in my hospital room. Thus, the PCA assigned to me for my post operative care had no clue that I couldn’t see. We got off on the wrong foot, when she started talking to me in what I interpreted to be a cell phone voice, that is, with no connection to me, like she was making an announcement from the middle of the room. Using my name would have helped. I asked her if she was talking to me, and she answered in a rather snotty tone, “Well, yeah.” When I asked her to show me how to work the TV, she said, “Basically, you just turn it on.” She still didn’t get it that I couldn’t see. When she finally got it, it took the rest of the afternoon and the evening to convince her that I didn’t need her help in the bathroom. She kept trying to push me in and make me turn around and sit down, when all I wanted to do was shut the door, so I could take care of business in there, by myself. I finally got her to let me shut the door, only to discover that she was still in there with me. I had to explain that it was only my eyes that don’t work. I can go to the bathroom on my own. Then I tried to teach her the method of guiding a blind person by letting her hold onto your arm above the elbow. After the bathroom scene, I’m afraid I got a little short with her on the way back to my bed. She tried to steer me by pushing me ahead of her. I told her it makes no sense to put the blind person in front, especially when she’s pushing an IV pole with the other hand. I had even more problems with the overnight PCA, who repeatedly asked my roommate if she needed anything, offered to bring her snacks and coffee, and kept stopping in to check to see if she was all right. This was all fine, except that she totally ignored me. I’d wait til I was sure she was finished administering care to my roommate, and then I’d ask if I could have some help too. If it weren’t for the leg compressors they make you wear to keep blood clots from forming after surgery, and for the fact that I was connected to an IV pole, I would have just waited til the coast was clear and made my way across the room to the bathroom without help. I could have refilled my own water glass, if anybody had been smart enough to show me that they had provided a nifty water jug with a plastic straw attached. Of course, it was across the room, and it didn’t occur to anybody to put it within my reach. So, there I was, pitifully asking for help, when my roommate never had to ask. The night nurse, whose real name is Joe, was the only person who had any common sense and compassion. He actually offered me a cup of tea. I felt like jumping out of bed and throwing my arms around him. He was an absolute angel. He kept asking me if there was anything else he could do to make me more comfortable. Maybe he was making up for the rudeness of the PCA.

What I learned through this nightmare was that no one should ever have to go to the hospital without an advocate. Yes, it might be inconvenient and boring for the friend or relative, but you really need someone to speak up on your behalf when you’re not at the top of your game.