A New Twist on Chautauqua

I’ve written twice about my experiences at Chautauqua Institution in New York, and now it’s time for the third installment, since I just returned from another unique week. Each time I go, I have a different week, depending on the person or people I go with. This year brought completely different feelings, observations, and enlightenments.

In case you don’t feel like looking up my previous posts on the subject, let’s just say it’s a week of culture, religion, learning, and music. It’s a lot of other things for other people, like boating, cycling, walking, and fellowship with friends.

Fellowship with friends and dogs was the highlight of this year’s CHQ for me. I went with 5 people I know from Ski for Light, Bill, Bonnie, Bob, Dan, and Carol. But the most significant fun came from the 2 Seeing Eye ® dogs who shared our rented house. Of course Dora accompanied me and did a fine job of guiding, but her new friend Boston added joy to the household. We kept them under our thumbs for the first few hours, giving them a chance to check each other out from a few feet away, but once we took off their leashes and gave them permission to let their hair down and play like regular dogs, they had a blast. First Boston, a darling little chocolate lab would lie on his back and let Dora chew on his neck, and then by some secret communication, they would switch places. The next minute, they would both jump up, run for the toy and chase each othere around the house. Next came a tug of war with the toy. Of course the toy was destroyed by the end of the week, but it was a small price to pay for the fun it brought to everyone.

Anyone who goes to CHQ knows that you walk to everything. I was a little apprehensive because of my back issues, but I managed to muscle through and put 22 miles on my sneakers. Unlike the last 2 years, our house was located on a street where cars are allowed, so it was a bit stressful walking, until we got to the red brick path, where cars and bikes are not permitted. Adding to the stress and even danger were the cyclists who never warned us with an “On your left,” as we cyclists do here, and it was very annoying, since twice, we were almost caught in a collision.

One of the funniest observations was inspired by 2 women walking by who noticed our 2 guide dogs resting at our feet. “I’ve never seen so many service dogs in one place,” one of them said. The sighted people in our group later remarked that they had not seen any other service dogs the whole week. This meant that those women had seen ours several times, as we were seen all over the place, and they thought they were different dogs each time. It was obvious they hadn’t noticed the same people attached to them.

The theme for the week was fear, not a subject I particularly cared for, but it was the only week my friends could attend. Most of the lectures were dark, philosophical, and many times over my head. Still, I managed to absorb a few tidbits of knowledge and perspective. 2 activities ranked highest on my list of enjoyments, sitting on the front porch with my friends, enjoying a glass of wine, and listening to the joyous romping of our wonderful dogs.

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Haunting the Radio Reading Service

Imagine going back to a place where you hadn’t been for 10 years, and almost everything was just as you left it. I had that experience yesterday, when I returned to the place where I had worked for 22-1/2 years. Only on this day, I was not the director of volunteers of the VOICEcorps reading service, but a guest on the morning talk show called Morning Exchange. As I boarded the paratransit bus and headed to the other side of town, I felt a little bit of joy in knowing that I would only be there for a couple of hours, and then I could go back home to my good life as a retiree. I was going there to be interviewed about the book I just published, The Bumpy road to Assisted Living a Daughter’s Memoir. As I stepped off the bus and gave Dora the “inside” command, she seemed to know exactly where to go. As I pulled open the door, the administrative assistant, Carolyn, greeted me cheerfully and scurried around her desk to give me a hug. After stopping by the new executive director’s office to say hello and to greet my replacement, Amy, Dora and I headed back to the control room, just as I had done every morning I worked there. I pushed open the control room door as I had done thousands of times and let Dora precede me as I took the chair I had sat in with my morning cup of coffee while Chuck and I discussed the schedule for the day. Well that’s not all we talked about . We always had some gossip and news of our respective relationships, our plans for the weekend, or the shows we watched on TV the night before, typical water cooler talk. It was the same on this day. I pulled out my notes for what I wanted to cover on the show, and true to Chuck’s sense of humor, he said, “Just like old times, Mary comes in and starts telling me what to do.”

Chuck hosted the show, and for an hour, I got to talk about my book and how I came to write it. One of the current volunteers happens to be preparing to move her mother into assisted living, so she joined in the on-air-conversation and affirmed how relevant this book is to those of us in our age group who face this traumatic time. Although most of the listeners will not be able to read my book just yet, as it is only in print, but Chuck and I discussed how we will work together to make it available in recorded form for the Ohio Library for the Blind and eventually for the National Library Services for the Blind. The first step is to have it recorded for broadcast on the radio reading service, and as it happens, Cindy, the volunteer who did the show with me will be the reader for the book. I can hardly wait to hear it. I have only heard it read by the synthesized speech on my computer.

After the show, Carolyn and Chuck and I had lunch together in the break room as we had done thousands of times. As if choreographed, I took my seat across from Chuck, and it was as if ten years of our lives had been lifted out, and then the past and present shoved together, and it was just like yesterday that we took our places in those chairs, unwrapped our lunches, and continued our conversation. We all look older, and we certainly have 10 years more of maturity and life experience, but for a couple of hours, those 10 years just simply disappeared.

Exciting News

Bumpy Road to Assisted LivingMy first book has just been published! This day has been in the making for over 2 years. After sending out about 150 query letters to traditional publishers, I finally decided to bite the bullet and self-publish, as many of my friends have done. I fought it for a long time, but I thought if it was going to be published in my lifetime, I’d better get real and take matters into my own hands and my checking account.

Self-publishing has been a great learning experience. For instance, I was able to have the cover designed to my liking, and the photographs selected by my daughter, Kara. Proofreading was much more of a project than I had expected, as 4 people were in on it, and the manuscript was read and reread many times, not only by my editor, but also by me and by Kara. If you go with a traditional publisher, you lose a lot of control, and you still have to market your own book. Here’s a synopsis:

Making the decision to move an elderly parent into assisted living against her will has myriad challenges. Like many adult children who want to respect their parents’ wishes, I didn’t take action until it was crucial. But unlike most adult children, I had to deal with this crisis as an only child who is totally blind. The logistics alone were only the start of my uphill struggle with this task.

For the last two years of her life, I learned many lessons about dementia and Alzheimer’s disease, and she learned to accept the difficulties of being 98 and living in an assisted living community.

In “The Bumpy Road to Assisted Living, A Daughter’s Memoir,” I describe not only the move, her adjustment to a foreign way of life, and the emotional trauma for both of us, but also some advice and comfort for others experiencing this inevitable change.

What makes my story unique is that I tell it with blindness always in the background. You will find some touching moments, some troubling, and some relative to your own life.

This is a memoir woven through my observations of who my mother was and who I am.

If you’d like to check it out, go to

dldbooks.com/maryhiland/

or you can find it on Amazon.

And thanks in advance if you decide to buy it.

LYFT

When the shared ride services, namely Uber and Lyft, made their welcome appearance on the scene in Columbus, I felt as though I had just acquired a chauffeur. All I had to do was swipe a few times and double-tap a few times on my iphone app, and in minutes, a car would be arriving in front of my house. It took a bit of practicing, a lot of sweating, and a great deal of frustration, but eventually, I was able to order a car on my own. Then without warning, LYFT disappeared, and Uber’s app was hard for me to use. “So that’s that,” I thought. “So much for affordable independence.” But then a few months ago, LYFT reappeared, and once again, I was faced with learning to navigate the new and “improved” app.

Yesterday, I had 2 very positive experiences, even though the ordering procedure provoked a lot of stress. Just when I thought I had mastered the app, they went and changed everything around, and once again, I was lost. Several swipes and a misguided double-tap later, I was finally stuffing my long-legged girl onto the back seat floor, and I was on my way to the beauty shop. I have several friends from church who regularly drive me to doctors’ appointments and to the Y, but I feel awkward asking them to drive me to appointments that are all about my appearance and not my health. Yes, my haircut or my manicure will cost me an extra $10 or so, but I love the freedom LYFT provides. I’m no longer nervous about getting done in time, not wanting my friend to have to wait. But now I suffer another kind of nervousness. As with other apps on my phone, it knows where I am, but sometimes it gets it wrong, like yesterday. I had to enter my address, and then I couldn’t find what to do next. Finally after swiping frantically, I got to the next field and was relatively confident the car would show up. But would he make a fuss about the dog? Does she speak English? You may have read about law suits against these companies regarding service animals. I’ve only had one incident where the driver has left me standing in front of a building. I learned my lesson. I no longer wait outside. I wait until I have received the text that the driver has arrived. By waiting, I have access to the make of the car and the driver’s name. I also try to call the driver and let him or her know that I have a dog guide. I am not required to do this, and some of my blind friends would be upset with me for doing this, but if I establish contact, I can first hear if they have an understanding of English, and then also let them know that I am a considerate passenger. If they are not a considerate driver and choose to leave me stranded, then shame on them, and they can expect to pay the consequences. It’s against the law to deny me service because of my service dog. And why do I want a driver who speaks English? I must be able to communicate with my driver. After all, I can’t point to where I want to go. When I arrived at the beauty shop, I hurriedly swiped away at the app, trying to find where I give the driver a rating and then again to where I choose the amount for a tip. I accidentally hit submit without selecting a tip amount, and there was no way to go back and hunt for it. But to my relief, a message was waiting for me on my lap top at home, thanking me for my business, complete with a link to a place where I could leave the driver a tip. Thank Goodness for pages that hold still and let me double-tap where I want. You see, I’m rated as a passenger too, so I want to be known as a good fare. If they “like” me, and I “like” them, we’re all good.

A Page for Dad

Father’s Day has come and gone, but that doesn’t mean I haven’t been thinking about him. I’ve written a book about the last 2 years of my mother’s life with hardly a mention of my dad, so Daddy, here’s a page for you. I promise, you’ll have a bigger part in my next book.

In Sunday School yesterday, we each had an opportunity to tell a story or what we learned from our fathers. My dad never met a stranger, and he always embraced the opportunity to help someone, even if it meant yelling out the car window, “Lights!” if he saw an oncoming car with the lights off at dusk. My dad was a blue-collar worker in machine shops, and he taught me the value of hard work and the work ethic that dictates “Get your work done before you play.” He taught me to love dogs of any size and color, but it wasn’t a real dog unless it was big and useful. He adored my mother. He grabbed every opportunity to hold her and give her bottom a little squeeze, even in front of me. I suspect there were other things going on that I couldn’t see. My parents weren’t perfect, however. While Mom would express her anger or frustration by throwing a dishcloth against the kitchen wall, Dad would retreat to the basement, sometimes for days, until he got over his mad.

My dad inadvertently taught me how to swear. They loved to tell the story of how we were driving somewhere when I was 3 years old, and the heater in the car had broken. It was freezing, and I suddenly declared, as only a 3-year-old can, “Deesus Twice. My finnies is cold.” I’m sure my mother rolled her eyes at my dad with that one.

Dad took pride in keeping our lawn well groomed and the envy of the neighborhood. In the summers, he worked diligently in the garden. I would sit on the garden wall and keep him company. Occasionally, on really hot days, he would have a bottle of beer sitting on the wall, and he’d take a swig now and then. So would I. Again, I was about 3 when I had taken more than a sip or 2 and suddenly declared, “Daddy, you’re drunk!” My dad was never drunk . In fact, I think his drinking days were over when he married my mom. He tended bar at the bowling alley, where he and my mom both bowled on leagues, and of course, when I was old enough to wield a ball, he taught me how to bowl. On many evenings, my dad and I would walk up to the corner store for milk or bread, and we’d walk in step, holding hands and swinging arms, singing “Me and My Shadow . . . strolling down the avenue.” He also loved teaching me marching chants, from when he served in the army and the Army Air Corps. He was a fast walker, and I had to skip every once in a while to keep up, despite his having polio as a kid and what he called “a club foot.” Yes, he had had polio and a big hump on the instep of his foot, but the Army was glad to have him. , He loved to fix things around the house and always had some project going, most of which involved painting. When he had a little paint left over, he’d find something else to paint, a shovel handle, the garage door, the front railing, anything that would stand still. When he had some wood leftover from some project or other, he made me a pair of stilts, and I took to them immediately, even trying some tap dancing steps with them. I’ve written about my favorite sayings from my family, but I think the ones from my dad bear repeating. When I’d have trouble pulling open a particularly heavy door or lifting something, he’d say, “You need a brick in your pocket.” When the coffee was too strong, he would say, “It will put hair on your chest.” This was always hilarious to me as a little girl, but I find myself quoting him all the time. The expression he was credited for, as being an original was “That’s a very pregnant idea.” And, even though I was his visually impaired little girl, he taught me to ride a bike and to play wiffle ball. There’s so much more to say, but I’ll have to save it for a chapter in my next book.

Inside Voices Please

Recently I had my hearing tested, because I wasn’t able to hear what my dining companion was saying across the table in restaurants. The raucous sounds around me were drowning out our conversation. My companion could always read my lips, but I’m not able to do that. I went to the audiologist and described my misunderstanding of consonants. But in normal situations, I could hear everything else quite well. I scored 100% on the words spoken in my headset, but I missed 30% of the high register tones sent to my brain by some weird-looking gadget which touched2 places on my head. Apparently, it’s this 30% of high frequency sound that makes up the sound of consonants. The ENT, on seeing the report, suggested that if I weren’t blind, I’d be on the border line of needing a hearing aid, but since I couldn’t see expressions or read lips, I should give them a try.

I did try them for over a week and returned them after experiencing almost painful amplification of the sounds around me. The world is already full of noise. I knew that, but having it amplified, even with the sophisticated technology of these highly rated hearing aids, it was driving me nuts. Upon wearing them home and then taking Dora out to play in the back yard through the garage, it sounded to me like she had tap shoes on. I was bewildered until I realized it was just her toenails on the concrete garage floor. I concluded that I could do without that 30% of the highest register of sounds. I could hear birds very clearly, probably more clearly than anybody, because I pay attention to them. So what if I missed a word now and then? But the problem is not that the words around me are too soft. Just the opposite.

Everywhere I go, I hear people shouting to one another, when they are standing 2 feet apart. When I’m in a room with bare walls, such as a locker-room, a stairwell, or restroom, the sound is deafening. When I’m in a restaurant, the noise of the table near me, where people are vying for center stage in the conversation it’s not only annoying but also impossible for my tablemates to hear one another. It’s not just me. I’ve been with a group of friends who have turned right around and walked out of a restaurant, because the voices were so loud. Haven’t these people ever heard of using their inside voices when they are inside? Do they all have to project like 3-year-olds whose natural and constant volume is loud?

when I’m in my back yard, I can hear the conversations of my neighbors on their patios 4 houses away. I concede that they are indeed outside, so they might be justified in using their outside voices, but the people they are speaking to are just a few feet away. I guess party equals alcohol equals turn up the volume of everything. Maybe I should get hearing aids after all and turn down the volume on the world.

The Scare of My Life

You all know about the troubles I have with airport personnel, everything from pushing wheelchairs at me to sky caps who can’t speak or understand English. But the experience I had in Philadelphia on my way home from my daughter’s was the most terrifying I have ever endured.

Twice, I told the flight attendant that I was able to walk down the steps off the plane, and twice, I told her that I did not need a wheelchair. Hadn’t I just walked up the steps to the plane? But there I was, ready to deplane, and there was the guy ready to hook up a ramp, and at the bottom of the steps, there was the sky cap with the wheelchair. This is such an old conflict that it bores even me. In retrospect, I should have taken the wheelchair, although I don’t know what I would have done with Dora. Put her in my lap?

After going in and out of elevators and being ushered onto a bus to take me from one end of the airport to another, and after rushing through a crowd of people at the door going back into the airport, I suddenly felt the floor beneath me moving. With horror, I realized that we were on an escalator. Not only did I have no verbal warning, but I was outraged that the sky cap had put my dog in danger. Now I know that many people with guide dogs use escalators, but I do not. When I got my first dog Mindy, my instructor recommended that I never use them, because if the dog’s toes or hair on her legs should get caught in the machinery, her legs could be shredded. The image was so ingrained that even though the school changed its policy and insisted that every student learn to use an escalator with the dog, I hated that part of the training and would hyperventilate by the time we stepped off. I learned the technique, which was to put my left hand firmly under the back strap of the harness and lift the dog as we approached the stepping off place. When I trained with Dora, I convinced the trainer to skip that lesson, because every building these days has either a staircase or an elevator, due to the ADA. I would never have to use an escalator. But here I was, frantic and scared to death that my precious baby would be hurt. All the time that I was yelling at that sky cap, she kept saying, “You’re OK,” but I wasn’t afraid of the escalator. I use them all the time, but never with my dog, and I always insist on finding the railing with my right hand before stepping on.

Realizing that I had to handle this awful situation, I put both arms around her middle, stuck out my right foot, and when I felt the end of the steps disappearing into the floor, I lifted that 77-pound dog to safety.

Instead of being joyous at my success in saving her legs, I gave that sky cap a dressing down she had never heard before. I hope she understood and had nightmares that night. I explained to her that first, she should have asked me if I could do escalators. I had been asked if I could do stairs over and over but never asked if I could do the escalator. Secondly, she gave me no warning that we were about to step onto the moving surface. She claimed she had been told to take me on the escalator, but she failed to say that to me. Clearly, this young woman had not received proper training in assisting a blind passenger. It’s the same old story, but with a dangerous twist. I was shaking with fury and wanted to cry. But I didn’t have time to cry. I had to make my connection. No wonder when I got to Columbus, the first thing I wanted to do was go have a stiff drink. I wanted to write a letter, but to whom? I don’t know, and it wouldn’t do any good. But it makes me feel better writing to you.