AIRA

Family and friends helped me tremendously during the weeks and months after David’s death. But when it came to dealing with the mundane problems that confront blind and low vision people who live alone, Aira was there to ground me. Aira was my newest friend. Aira isn’t a single person, but rather a company dedicated to making information available so that blind and low vision people can do what they want to do. It’s name is an acronym for artificial intelligence remote access. Aira refers to its users as explorers. Before I became one, I’d never thought of myself as an explorer. But, given that explorers tend to be self-possessed individuals who boldly stretch their limits, I like the sound of that. Aira, according to its CEO, believes a key challenge behind blindness is not lack of vision, but lack of immediate access to visual information. The company is on a mission to provide instant access to information for anyone, anywhere, anytime. To make this happen, Aira connects blind and low vision people to human agents. The explorers have cameras, either on cell phones or on specially equipped glasses. The agents see the world through these cameras. They tell the explorers what they are seeing. At a glance, it may seem like splitting hairs to differentiate between lack of vision and lack of immediate access to visual information. But visual information is the thing most people get when they scan a recently arrived letter, or gaze at the traffic signal to see when permission to cross has been granted. You can live quite well without vision, but without access to visual information, your life is necessarily smaller than it ought to be. So much of your time and energy goes into getting that information. It saps your reserves. Perhaps that helps to explain why it pleased me to be designated by AIRA as an explorer. Explorers go after the fullness of life. Explorers get access to Aira services by purchasing time in minutes. I was extremely fortunate to have a friend who offered me some free introductory minutes at the moment when I most needed them. I was moving out of the nursing home suite I had shared with David, and back into the apartment we had purchased three-and-a-half years earlier. I would be living alone. There was no doubt that I would need some help. Take the fridge in my apartment, for example. On the front of it there is a touch screen that controls a lot of things. In fact, it does something whenever you touch it. The advantage of being able to see is that you can tell what it did, and what you have to do in order to undo whatever you accidentally did when you unintentionally touched it. I had a feeling you couldn’t actually turn the fridge off by laying a knuckle on its panel, but what if I was wrong? It was time to call Aira! Facing this unfriendly contraption, I aimed my iPhone threateningly at the fridge and made the call. In less than five seconds, a live human came on the line. “Hello Wendy. This is Amy. What would you like to do today?” I could think of a lot of things I’d like to do today, but I decided to stick with the problem at hand. “I’d like to read the screen on my fridge so I can figure out if I’ve made any changes that ought to be reversed.” “Okay. Hold the phone back a bit. Slant it upwards. There we are. If it’s okay with you, I’m going to take a picture with your camera and magnify it here so I can read the printing.” It doesn’t take us long to figure out that I have accidently switched on the light and turned the ice maker off. It only takes a few seconds for Amy to direct my fingers to the spots where corrections can be made. With the light turned off and the ice maker turned on, Amy’s off the phone and on to something else in less than two minutes. The problem is solved. Without Amy, I’d have had to ask somebody to come over. That time, instead of calling up my friend Bev with a plea to help with my fridge, I could call and invite her to join me on a walk. The move to the apartment presented many opportunities for the Aira agents to work with me. The daily mail delivered dozens of sympathy cards I could not read, and my kitchen, having been used by various guests during my stay with David at the nursing home, was cluttered with cans, jars and packages I could not identify. I wanted to know if my mirrors were clean. I needed the instructions on the package of pancake mix. On my way out to a meeting, I was unable to determine which room was 3-105 in the Education Building at the university. Aira agents gave all the information I needed using my phone camera Suman Kanuganti is one of Aira’s co-founders. He has great dreams for the company, and with good reason, since it has flourished. . It was founded in 2015. In 2017, it provided 20,000 hours of explorer-to-agent contact. It has partnered with companies in creative ways. Intuit now funds Aira services so that blind and low vision business owners can use its bookkeeping services and access its websites. Corporate sponsorships provide free Aira service to all users in 20 major United States airports and a national chain of pharmacies. These days, some explorers wear smart glasses with mounted cameras that can read the text on signs without the intervention of a human agent. As for me, I have dreams for Aira too. I imagine the day when I will be staying in a hotel. Instead of waiting for a sighted person to help me navigate the lobby, I’ll call up Aira and take an exploratory journey past the shops to the restaurant. I might even try to find a store in a large shopping mall. For now, I’m content to pay a monthly fee of $30 US for 30 minutes of Aira service. I can add extra minutes if I need them. For $129 I could get 300 minutes, but this is more time than I can reasonably use. Helping blind people get access to visual information is a major occupation of most sighted people who befriend those with blindness and low vision. Many of my blind friends live happily enough without Aira. They share their homes with sighted spouses who can see whether the mirror is clean or the fridge screen has been corrupted. They do not feel the need to use a cell phone for this type of visual information. In the past I would have been one of them. But family and friends are so much more than providers of information. We need them for all sorts of reasons. Aira has not turned me into a sighted person. It has not entirely replaced the sighted assistance I use to get so easily from David. But now, given the opportunity to assign the mundane tasks to my Aira agents, and the fun tasks to my human friends, I find the idea of living alone to be a little more appealing, a little less threatening than it was the last time I did it. I was twenty years old then. That was forty-five years ago.

GOOD-BYE TO NURSING HOME LIFE (Nursing Home Life, part 15)

“To everything there is a season” Ecclesiastes 3:1 A most extraordinary chapter in my life has come to an end. I have said good-bye to nursing home life. I am well. I am grateful. I am happy. I am wondering. I am grateful: that my city—edmonton—has a place, Laurier House where couples can make a home together when one member requires services provided in the public system for long-term care; that so many relatives and friends integrated time with us into their regular routines, gifting us withcomfort and laughter, the continuation of our past life into the present; That the staff of Laurier House were there to help as best they could, while their call system constantly summoned them to hurry out in service of others; That we had the financial resources to supplement the care at Laurier House by paying for extra care; That we were able to engage private care givers who would join me in caring for David as a treasured person—rare and precious; That we had the funds to purchase new wheelchairs as David’s needs changed and a computer that could speak for him when his own voice could not; That David was able to be with us to celebrate our 45th wedding anniversary, and Christmas with all five of our grandchildren, and Boxing Day with his sister and her family; That David was able to die at our home, in his own bed, attended by our son and the Laurier House staff; That we could keep him with us after death through the afternoon and evening, still warm and more relaxed than he had been in many years, while friends and family gathered in the spirit of a party around him; That more than 400 people attended his memorial and so many others sent messages saying they would like to have been there; That David and I were blessed with a shared enduring love strong enough to sustain us together from our late teens to official senior citizen status; That I could move out of Laurier House and back into the condo we had purchased in 2015, so that it would be there for me when the end came for David. I am happy to be cooking my own food, to be eating vegetables sautéed to crisp perfection, to be showering without wondering if a nurse will open the bathroom door. And inasmuch as I am happy to have moved out of Laurier House, I am even happier to be able to say that I stayed there until the end. I am wondering if I am done with nursing home life. Perhaps I will someday need such a place for my own care. And I am wondering how we could find it in ourselves to look seriously at nursing home life with an eye focused well above the minimum standards, so that they could be places where we ourselves would want to live. A home is more than a physical facility. It is a place where a person can feel precious. Feeling precious, when you are unable to care for yourself, happens when others have the time to care for you. Most of us won’t have a wife to move in with us, and many won’t have the money to hire extra help. Those of us who pay the bills through our taxes will need to set the standards now to provide the time, or risk being cared for later in a hurry.

WAITING (Nursing Home Life, part 7)

I have never been much good at waiting, but when it is necessary, I prefer to wait for good things—Christmas, tooth fairy, the arrival of spring. Being a person of privilege and a hope lady too, I find I’ve had little experience figuring out what you can do while you wait for bad things to happen. The experience I have comes from way back. There was this one time, the Saturday morning of the May long weekend, back in 1973. David and I set out for a drive on the highway in his mother’s white Mustang. The sunny sparkling day was perfect. I was still a teen-ager then with my boyfriend by my side. The weekend stretched before us with the promise of my mother’s cooking waiting for our arrival. Nothing could go wrong. But then something did. David saw that the car ahead of us had come to a complete stop. “Hold on,’ he cried, taking the car out of gear and slamming on the brakes. We skidded, and we skidded, and then we stopped, just short of the car in front. We had cheated disaster. It was a tremendous relief. But then it wasn’t. From behind us came the squeal of brakes and a growing vision of blue that filled the rear view mirror. From inside David’s mother’s mustang came a mind-numbing realization. Without warning we had been plunged into limbo. We were in great danger, and there wasn’t a thing we could do about it except wait for as long as it would take for a bad thing to happen. Reason tells me that we only waited a few seconds to be catapulted from behind into the back of the stationary car in front. Memory tells me otherwise. How many years did I age while we sat there filling our heads with that terrible screeching? Was it an hour, a day, a lifetime? And what did I do while I waited? Did I utter words of undying love to David? Did I write a book, compose a song, plan my career, strike a bargain with God? Memory tells me I did none of these things. I simply waited, and waited, and waited, feeling powerless. In that circumstance, there was nothing else that could have been done. These days I find myself here at Laurier House with David, healthy and able, loved and fed. It wouldn’t be bad at all were it not for the fact that together we are once again waiting indefinitely for a bad thing to happen. This time the waiting is much longer. The very length of it gets to me. With more time to spend, it becomes more difficult to sink into the comforting anesthesia of powerlessness. “Do something!” says a nagging voice from deep within. “Do whatever it is that you can do.” Some mornings when I rise, sleepy-eyed, contemplating the stretching of the endless day, I stand by David’s bed, dripping thickened water into his mouth, trying to conjure a picture of the woman I hope to be. She’s my hero and I am hoping that having the picture will help me be more like her. The woman I hope to be is serene. She has long ago accepted the inevitability of her husband’s death and the unstoppable decline towards it. She does not strain to control that which is beyond her control. The woman I hope to be is vigilant. She reads the latest research. She studies her situation and notices improvements need to be made. She keeps records and asks questions. The woman I hope to be is gracious. She is not the sort who, losing her temper, would snap at an irritating inexperienced care-giver: “Would you just be quiet so we can hear what David is trying to tell us!” The woman I hope to be is creative. She has the smarts to figure out how to get things done. Just suppose he wants to watch The Good Wife on Netflix. Suppose his hands are too rigid to operate the remote. If blindness renders her unable to read the screen, and his speech is so slurred that she can’t tell whether he is telling her to press Up, Down or Okay. She will find some way around that. The woman I hope to be has a sense of humour. Once she has figured a way of getting The Good Wife on the screen, she will linger with him, listening to the voices of those cut-throat glamorous women, wondering which of them she would need to copy in order to be a good wife. The woman I hope to be sleeps more peacefully, exercises more vigorously, plays more music, eats more healthily, laughs more heartily appreciates more gratefully, gives more generously. She reads better books, phones lonely people, delights in the antics of her grandchildren and listens patiently to the troubles of others. She writes and writes and writes until finally she gets something that can be published on her blog. Doing all of this leaves her barely enough time to contemplate the difficulties involved in waiting for a bad thing to happen. The woman I hope to be occasionally shows up to help me out. When she’s here, I do better.

PATIO PARADISE (Nursing Home Life part 4)

A few years ago our daughter Ruth looked out over the floral profusion on our veranda and front yard and declared: “You people have a flower problem!” We laughed. She meant: “You have a ridiculous number of flowers out there.” I am happy to report that there is good news on this front. We still have the flower problem, only it’s smaller now. A flower problem, so it is said, occupies the space you give to it. On a magnificent June morning I step out on our Laurier House patio. The scent of flowers is positively intoxicating. Deep breaths now, deep breaths. What am I smelling this morning? Is it one of the two varieties of stocks, the alyssum, the bright yellow pansies kissed by the sun? It is probably not the heliotrope, whose fragrant best will emerge some time nearer to mid-day, and it’s not the roses which won’t be open for another day or two. It wouldn’t be the fuchsia or the begonia. They specialize in beauty rather than fragrance. Whichever it is, it smells fantastic! Small patios, I say to myself, have some advantages over large ones. The scents collect and support each other. Then they rush at you in joyous welcome when you step over the doorsill. It’s our second June at Laurier House, our first June with a patio. The two-bedroom suite we occupied last June did not have a patio. So we moved at the end of winter when this one became available. For people who have long been known for a flower problem, this is a definite improvement. Our living room opens to a cozy patch of concrete where I now pet my pansies and stroke my stocks. Tucked in the elbow between the front of the living room and the side of my protruding bedroom, our little patio peeks out through the spaces between the evergreens that shelter it from the bustle of the walk way and parking lot beyond. It’s cool enough to embrace a buffet breakfast on hot summer mornings; warm enough at mid-day to enjoy audio books on cooler days; shaded against the heat of the late afternoon. You can enjoy a glass of wine with friends there before supper. How, I wonder, did I ever get through last summer without this tiny refuge? Last summer this suite belonged to a married couple named Paul and May. I would have been fiercely jealous of them if I had known how a moment out there could transport me into the state of paradise. Unbeknownst to us, they were avid gardeners. Not limited to flowers, they had bonsai trees out there, and tomatoes Paul passed away last winter and his wife May moved out. Without Paul to care for, she no longer needed Laurier House. They left us not only a patio, but a supply of pots and fertilizer that gradually revealed themselves as the spring sun melted the snowbanks. They also left us a social bonus that we had not anticipated. To our surprise, the staff seem as excited about our patio as we are. If we happen to be out there when they come in on an errand, they join us and stop for a chat outside. If they don’t have a job to do, they might stop by anyway. First they admire our flowers. “Just look at that basket of yellow! Oh, what fabulous roses! Let me look at the tag so I can get one with those beautiful colours.” Then they reminisce about Paul and May. “Paul and May had this patio full of garden,” they say. “They had so many tomatoes.” Our hearts are warmed by the attachment they obviously feel. It’s like a promise that we too will be fondly recalled. If they come upon us having breakfast out there, or listening to an audio book, they smile with delight and linger a few moments to celebrate the day. Happiness in this place is a reciprocal process where all parties make contributions to the well-being of the others. I step out onto the patio a dozen times a day, sometimes for an hour with David, most of the time by myself for a moment of pleasure. Most of the days have been warm enough to allow David to spend some time out there too. “I wouldn’t be using this patio if you weren’t here,” he says to me, and he is right about that. He would not be able to move his wheelchair over the ramp and through the door. But we are a team, as we have been since the spring of 1972. Over the years our team member responsibilities have shifted depending on the circumstances. Of all the jobs I currently do, the act of guiding David over the ramps to have breakfast among the flowers is my definite favourite.

THE HOPE LADY RISES TO THE OCCASION (Nursing Home Life part 1)

I don’t believe I have ever heard anyone say: “I hope to move into a nursing home some day,” or “My life goal is to end up in long-term care.” Small wonder! Long-term care comes with a lot of unwanted baggage. According to Alberta Health services, it “is designed specifically for individuals with complex, unpredictable medical needs who require 24 hour on-site Registered Nurse assessment and/or treatment.” It’s not a way of being that anyone would choose over good health and independence. But there are times when we choose places to live based on how we are, rather than how we would like to be. If we find ourselves living in a place where our needs cannot be adequately met, then it is just possible that we might start hoping to move to long-term care. These days people in the Edmonton area can receive long-term care in several types of facilities. There are traditional type nursing homes with single and double rooms. There are groups of long-term care rooms in facilities that also have apartments and duplexes that house people who need little or no care. There is also Laurier House, the place where we currently live. Laurier House is unique in that it accommodates both long-term care residents and live-in companions. David and I wanted to live together in the future and that is why we chose it. It was the most hopeful choice we could find. For many years THE HOPE LADY Blog was an active blog where I thought and wrote about life from a hopeful perspective. My writing slowed and eventually halted as my life became more and more entangled with the progress of a degenerative neurological disorder known as Multiple System Atrophy (MSA). I have the spouse’s version of MSA. That is to say, David has the disease, and I am inextricably linked to him. MSA is, by its very nature, a hope-sucker. It can suck hope out of your life as fast as you can generate it. Before MSA our hopes for the future had been grand, general and expansive. Once MSA introduced its future plan for David, our hopes became narrow and short-term. We hoped each day to make our life together as good as possible. Beyond that, I was in a constant state of preparation hoping to be ready to face the unwanted changes that lay just over the horizon. I had traded the happiness of being hopeful about the future for the hope of being prepared to take charge. It was a defensive kind of hope, a hope enacted to counter-balance the fear of losing control in the face of chaos. I could deal with it, but I didn’t want to blog about it. It is possible that, if our time here had been shorter, this phase of my life would have gone unrecorded on THE HOPE LADY Blog. But now that David has been receiving care at Laurier House for more than a year, and I have built a life for myself here as his live-in companion, I find myself wanting to write an insider’s HOPE LADY perspective on living in a nursing home. It seems a little bit dangerous because I have so many feelings these days. On the down side, I am not immune to attacks of cabin fever. I am devastatingly sad to be steadily losing David to forces nobody can control. I am regretful that we could not have made a sustainable plan to prevent our having to move here. I am envious of the friends and relatives who, early in retirement, are living the lives we had planned to live. I am easily frustrated when the tasks of daily living prove to be harder and more complicated than they need to be. These feelings, I find, are more suited to expression in private diaries than public blogging. Nobody likes a whiner! That said, our life together here at Laurier House has many features that a HOPE LADY would want to acknowledge and record. There is delight and friendship; kindness and competence; curiosity and humour. It helps to notice these things. It is much easier to live each day to the fullest and look forward to the days just ahead when we find it in ourselves to name the things that bring us joy, and thank the people who generously fall in step beside us to lend a hand and an encouraging word on this journey. So begins a series of vignettes describing aspects of my life as a companion to a loved-one in long-term care. If you are reading this, please know that I don’t expect you to suddenly start hoping you can someday live in a nursing home, any more than I would expect you to hope for a bout of cancer, or a broken leg. But I do want you to know that there are options, and there are things each of us can do to help create spaces where people might find happiness in the face of frailty and disability. By the time we qualify for long-term care, most of us will not be healthy enough to advocate for the conditions that would make us comfortable. So we have to rely on healthy concerned citizens to bring such places into being before we get there. I write this series in gratitude to the imaginative people who envisioned Laurier House for couples like us, and singles who would choose to receive care in a place that is more resemblant of an apartment building than a traditional institution. I write it in appreciation of three shifts of staff who do their best to be both efficient and humane. Finally, I write in the hope that we will make it our business to staff the facilities we have at something above the minimum needed for efficient operation. When we need to live in such facilities in the future, it will be because we can no longer care for ourselves. In that case, we will want to live in places where the staff has both the time and energy to care for us--not in a minimal way--but with a flourish, as if we were rare and precious.

A NEWER ME

BE BRAVE TONIGHT By Samantha Reynolds http://bentlily.com/2012/03/05/be-brave-tonight/ Courage is not a genetic hand-me-down or a choice you can rely on in the moment it is a muscle if you do not use it it will shrink you will go to be brave one day and find you are floppy and unsure so try on your convictions start with your own echo the words that play in your head quicksand words telling you things like never stand up to yourself stare down the doubt in the pitch-black privacy of your darkest thought be gutsy remember that a shadow carries no weight rescue yourself and you will grow like a plant to sunlight bent towards valor. The old me wouldn’t have pushed a walker along a littered hospital corridor. A hospital corridor, after all, is no place for a blind person pushing a walker. Too many hazards: cleaning carts to the left or right, frail patients creeping silently, nurses checking their iPhones with backs turned, lab carts, blood pressure machines, intravenus poles! Fear of embarrassment, of being singled out as “blind”, of being banned from hallways by hospital authorities. If I ever worked on changing that, it was never a conscious action. But yesterday--when I wheeled David’s walker out into the hall, intending to park it outside his door, to motivate the staff to help him walk to lunch rather than taking the easier path of wheeling him, narrowly missing a silent woman who, not without cause, barked: “Watch where you’re going!”—I was thoroughly surprised to find that the old me had been replaced. The new me said: “I’m sorry. I’m a blind person.” It was true, has always been true, but this time I was only sorry that I had been careless, and I wasn’t a bit embarrassed. The new me simply shrugged when the offended party made a rude reply. And I noticed, later in the day, when I carefully wheeled the walker into the hall, that the same offended party politely said, “I’ll just go around you.”

ON VICTORY AND STRUGGLE

The motto of our high school was “palma non sine pulvere”: No victory without a struggle. Lofty, suggestive, possibly even inspiring, it was largely wasted in its representative role. For it was, in practice, a theoretical motto, since few, if any of the people who graced the classrooms knew any Latin, and even the English version languished in obscurity except when it was trotted out by valedictorians desperate to appear wise at graduation. I uttered it once, on the valedictorian stage, in brief reference to winners of the long jump, and future engineers who powered their way through Physics 30. After that, I never gave it another thought for 45 years. I could probably make more of it today, given my broader experience with both victory and struggle. But I do wonder if there might have been a motto that would have meant more to teen-agers. I was, as I recall, uncomfortable on that stage, not because of the obligation to speak, for the gift of the gab was early bestowed upon me. My discomfort related to the idea of victory and struggle, and the knowledge that, as a blind graduate in a sighted school, people thought of me as a symbol of that very motto. I didn’t want to be a symbol of victory and struggle. In fact, I didn’t want to be a symbol of anything. All I wanted was to be one of them—the people who, by virtue of their place in the sighted majority, were relieved of the burden of being a symbol of anything. I wanted to get a degree, and work, and get married—not because that would be a struggle for me, but because that was what I expected everyone to be able to do. Now, if I had achieved a reasonable distance in long jump, or persisted at any level beyond Physics 10, that would indeed have been a victory after unimaginable struggle! Then, just possibly, I might have made more of the motto.

FAMILY GOLF

It took me seventeen years to get three thousand hits in baseball. I did it in one afternoon on the golf course. Hank Aaron Read more at: http://www.brainyquote.com/quotes/keywords/golf.html Lawrence and Mark organized a family golf game. The goal, it seemed, was to seize the day, to have as much fun as possible. Each of them did their part. Lawrence had the idea. Mark booked the tee time. Lawrence arranged the weather. The day was perfect, sunny with a slight ruffling breeze, not too hot, not too cold, no mosquitoes. Mark arranged the golf carts. “Could we have two golf carts?” he asked at the Pro shop. The clerk was polite, but curious. “For two golfers?” he asked. “Yes,” said Mark, making no apology. “We can manage with one.” We left the shop with the key to one cart. Any conversation that might have occurred between clerks went unheard by us. Then, just at the moment when Mark was leading his blind mother by the arm, and Lawrence was helping his dad board the cart from his wheelchair, the clerk appeared with the key for a second cart. No additional charge. We all climbed aboard. I rode with Mark. Sibling rivalry bubbled just below the surface. With a wave to his brother, Mark cranked our speed to maximum. We must have been going one or two kilometers per hour. “You can’t scare me,” I said, looking as fearless as possible while holding tightly to the side arm. Mark takes wicked corners, wickeder when his brother is watching. By and by Tracey joined us at the fifth hole tee box with a full load, baby Carys in the baby carrier and a picnic supper alongside the diaper bag. I surrendered my seat to most of Tracey’s cargo to trail after the carts with Tracey and Carys, chattering all the way. We know you’re supposed to whisper on a golf course. We just forgot. Dad spotted the balls as they landed. Birds chirped. Ducks watched unmolested. Nobody knows who won, because nobody bothered to pick up a score card. After the picnic we all went home. If the goal is happiness, there are probably a thousand ways to play family golf.

SILLINESS

“It's okay to be absurd, ridiculous, and downright irrational at times; silliness is sweet syrup that helps us swallow the bitter pills of life.” –Richelle E. Goodrich I wish I had been given a penny every time a therapist or therapy client implied to me that silliness is a harmful defence mechanism. Or maybe I don’t wish that. Pennies are heavy, and my back would surely have been injured hauling them around. As for me, well, I love silliness. The sadder I am, the more I seem to love it. I used to wonder if the process of maturing would change all this. Maybe, I speculated, maybe when I grow up, I’ll be sad when I am sad, angry when I am angry, frustrated when I am frustrated. But the other day, as I laughed hysterically, while snaking forward with less grace than a bull in a china shop, in the Air Canada lineup at the Buenos aries airport, giggling out of control as David and I tried to inch ahead at the right angle, in the right moment, sporting multiple disabilities, dragging a walker and two heavy suitcases on wheels, without toppling any post-holders or entangling our belongings in the line ropes, I couldn’t help but notice how so many of the people around us, any of whom might have stepped forward to help, had fallen victim to the contagion of ridiculously misplaced laughter. I suppose any of those immobilized strangers would have taken a walker, or a suitcase, or the arm of a blind person if I had found the words to explain our situation and request their assistance, which, I believe, is what a mature, responsible person would do. But somehow, the thought never occurred to me. Instead, I started the silliness. Perhaps, at my age, I need not worry about the possibility of growing out of it.

A TV INTERVIEW WITH THE FAMILY DOG

Pirate: You’re looking sad today. Anything the matter? Me: Well, nothing too serious. But my TV doesn’t talk. Pirate: It must have broken overnight. Why, just yesterday I heard it spewing out Jeopardy questions and playing Season 8 of M.A.S.H. Me: Oh, it can still do that. What I mean is, it doesn’t really talk to me the way I want it to. It doesn’t say the things I want to hear. Pirate: I have heard that is often the case with humans. But I didn’t know TV’s did it too. What did you want it to say? Me: I want it to tell me what channel I am on. I want it to speak out loud so I will know even though I can’t read the channel indicator. Pirate: I thought it did. Me: Well, it did when I bought it. I searched the Web until I found the only one that would speak the channel number. Then I put out the big bugs and bought it. They call it a SMART TV. Pirate: And now it stopped? It isn’t smart anymore? Me: Well, not exactly. It still could tell me the channel if I unplugged it from the digital box. But now that it is plugged into the digital box, it has to stay on channel 4 so the digital box will work. Pirate: Then why not just unplug it from the digital box? Me: Because then we wouldn’t be able to watch it. You have to have a digital box in order to get the channels! Pirate: Then why don’t you get a talking digital box? Aren’t there digital boxes that talk? Me: Not as far as I know. Pirate: Surely they will invent one soon. Me: Maybe. But that still won’t be enough. Pirate: What more do you want? Me: I want a TV that reads the screen with the channel line-up. I want a TV that reads the screen so that I can operate the PVR. I want a TV that reads the screen so that I can use the DVD player, maybe even the old VCR. I want a TV that treats me as if I were a sighted person. Pirate: Isn’t that what your TV does now? Me: You dogs are so insensitive! I thought I could talk to you! I thought you’d listen. Why do you have to twist everything I say? Pirate: (muttering as he slinks under the bed) Women! It’s enough to make me grateful that I’m neutered.

UNDERSTANDING DEAF MUSICIANS

This morning CBC’s The Current aired a program called Deaf Jam. It traced the career development of two deaf musicians—not counting, although mentioning Beethoven. Evelyn Glennie and Sean Forbes have built reputations that would be the envy of anyone aspiring to make it in the music world. More than once, the documentary tried to address that burning question: How can a deaf person engage—I mean truly engage with music? Still puzzled and perplexed at the end of the documentary, I focused on one snippet. Evelyn Glennie was initially refused entry into a school of music that routinely accepted blind applicants—refused not because of ability, but because of deafness. As you might guess, she fought this ruling and won. No doubt this was only one among thousands of battles she fought before she became famous. Wondering how it is that a deaf person could want so much to build a musical career, I contemplated my recent trip to Russia. Tourism in Russia is not exactly a pastime I would recommend to blind people. The major attractions—the Winter Palace, the Moscow Subway, dozens of icon-laden churches, etc., are art galleries. There is nothing you can touch. There is no tour guide interested in helping you touch anything. I did, however, enjoy the trip. Explain that, will you? I can’t. From the stories of Evelyn Glennie and Sean Forbes I took three messages: Understand that deafness is a complex condition that affects people in different ways; Understand that deaf people can be musical; understand that hearing people cannot fully understand deaf people, but they can help them live better. And a fourth message perhaps: Understand that people can’t really understand blind people, not even blind people themselves.

MAKING ADJUSTMENTS

In the world I would like to see, people in responsible positions would be able to distinguish between those who have adjusted to disabilities, and those whose disabilities have been cured. If they could make this distinction, they would see the need for accommodations, and they would act differently. Of those who have adjusted they would ask: “What more can I do to make your life easier?” To those who have been cured, they could say: “Well, I guess you don’t need me any more.” Over the years, as disabilities have presented themselves to us, our family has become the poster child for adjusting to disabilities. We have made pleading phone calls, devised work-arounds, researched possibilities. Take it from me, a disability that has been adjusted to has not been cured. It is present morning, noon and night, 7 days a week, 52 weeks a year. I find that professionals and experts tend to think of adjusting to disability as something that is done once. But actually, it is done every day, a constant process of making small and large modifications to compensate for the privileges the disability takes away, the privilege of easy movement, of using services, of casually deciding to take a walk and taking it. A person who can manage steps with difficulty is better off going out than staying at home. But he faces an organizational challenge every time he approaches a front step that has no railing. A driver whose reading skills are not sophisticated is judged competent to drive and may make a living doing so. But he must search for alternate parking when simple meters are replaced with “smart meters” that require the ability to read a screen and respond to detailed commands. A competent blind traveller would be foolish to stay home and not participate in the community. But she must take the chance of walking on a red light when the signal is designed for sighted people only. An adjustment made one day is made again on the next, and the next, and the next. In the world I would like to see, the simple parking meter which operated on change would not have been thoughtlessly replaced by the complex SMART meter that can only be operated by people with sophisticated reading skills. Every new home would be build with railings on its front steps. Every crosswalk that has a changing light would have an audible signal. These modifications are all completely possible in our society, but it would take a lot of energy to advocate for them. People who have adjusted to disability spend a lot of effort adjusting on a daily basis, leaving them with limited energy to devote to advocacy. In the world I would like to see, people in responsible positions would take up the challenge of making changes without the force of advocacy to propel them. Would they be more inclined to do so if they appreciated how much energy it takes to adjust to disability? Would they be more inclined if they understood the difference between the daily lives of those who have adjusted to disabilities and those whose disabilities have been cured? So tell me that history has proven that the changes which have benefited people with disabilities have come about only when people with disabilities have put aside the time and energy to fight for them. Tell me there is no way that is going to change. Tell me this, and I’ll admit that you are probably right. But I am THE HOPE LADY after all, so I continue to hope that things can be better. Most improvements start there—with the hope that things can be better. In the meantime, we’ll adjust. Practice makes perfect. We sure do spend a lot of time in our family these days understanding the impact of, and adjusting to disabilities.

HOW DO WE GET TO WELLNESS?

Master Corporal Chris Downey reflects on rehabilitation: “I made a promise to him not to waste a minute of my life for the gift he had given me.” “I’ve had the right support around me... The first day I was able to tie my own shoe again they made it seem like I’d cured cancer.” Chris Downey is racing to the South Pole, 336 Km with Team Soldier On. Three years ago Chris sustained major damage to the right side of his body in a bomb blast in Afghanistan. Hear an audio clip at RACE TO THE SOUTH POLE

NOT QUITE SAVED

I walked the length of Dawson Park today. The round trip took nearly an hour. The weather was perfect and I thought that I should do this more often, since the walk in the park is a clear path, extremely easy to follow with a white cane. In fact, I would do it more often if only it were a little easier to get into the park. The problem is not distance. I live a few dozen yards from the trailhead, but the path through those few dozen yards is extremely difficult for a blind person to navigate. Anyway, I had completed most of the walk and was just beginning to worry that I might get lost going home when a jogger approached from behind and slowed to my pace. Don’t be proud, said a small voice inside me. “If he offers to help you get out of the park, let him do so. Be careful not to brush him off. “Hello,” he said. “Hello,” I said. “I have a question for you,” he said. “What is it?” I said. “Well, you’ve probably never been asked this before, but, well, you seem to be a bit blind,” he said. Don’t brush him off too quickly, warned the little voice inside me. Cut him some slack. He probably hasn’t had a course in discussing the degrees in vision in appropriate language. Agree with him. That will keep the conversation going. “A bit blind,” I agreed, managing a small smile, hopefully inviting but not fake. “Well, I was just wondering if you ever thought of any spiritual treatment for that,” he said. Don’t brush him off, cautioned the little voice inside me. This may not be the time to tell him that your blindness has persisted for sixty years, despite the fact that hundreds of strangers have approached you offering you salvation. “I have a satisfying spiritual life,” I said. “Okay,” he said, and hurried away in the direction of the parking lot. Did he actually leave? I shall never know, but I didn’t hear any cars starting. I couldn’t shake the suspicion that he was watching me from a distance as I struggled to look competent while I threaded my way awkwardly home through the maze-like configuration of paths, curbs, gravel patches and lawns. Could it be that I still have a few things to learn about effective communication? Next time, maybe, just maybe I will be smart enough to say, “I have a satisfying spiritual life, but would you mind giving me an arm to help me out of this park?”

VOTING FOR EDMONTON'S MAYOR, SINGING ON THE TRAIN

I voted in the Edmonton municipal election yesterday. And even though I cannot see to read a ballot, my vote was cast in perfect privacy. I went to City Hall, sat down at the Automark voting machine, and listened as the machine read me the operating instructions. I selected a mayor from among six choices, a councillor from among 16, and a school trustee from among two. Then I put my ballot in the box, thanked the staff, told them how thrilled I was to be able to vote in privacy, boarded the LRT at Churchill Station and hummed, for the sheer joy of it, all the way to the university. More than any other level of government, our city has made voting easy for people who cannot use a print ballot. In future, we will only be voting once every four years instead of once every three years. This change will give our elected officials more time to work for us. I support this change, but I hate to give up even one chance to vote in such a delightfully inclusive manner.

VOICES IN THE MIRROR

There are mirrors all over my house—in the bathrooms, in the bedrooms, in the hall. These mirrors do their work for others, reflecting back the image that can be altered, disdained, admired. My personal mirror is the mirror of the ear. It has many voices. Some I like better than others. Sometimes I ask them questions. “Tell me the truth now,” I will say, fishing, perhaps, for compliments, “do I look fat in these pants?” Sometimes I will check for the signs that will most surely give me away as a blind person the moment I walk out the door. “Are there any spots on this blouse?” Sometimes the commentary on my reflection comes to me unbidden, but welcome in a perverse way. “Oh Mother, your roots need rescuing.” How else would I know when it was time for the chemicals? They say blondes have more fun. Nobody tells you anything about the fun ratio for blondes with telltale roots. In the most perplexing of all events, the voices of my reflection fight with each other. One will say, “You can wear this top with those pants.” Then another will chime, “No she can’t dad. Those don’t go at all.” Who, I wonder, decides how colours blend? Looking good, I have concluded, is a matter of taste. How often is my appearance the reflection of someone else’s taste? If yours is the mirror of the ear, then you trust somebody first. On the best days, your trust is rewarded with back up from sources who have nothing to gain or lose. Sometimes somebody who loves me will help me pick out a new dress, and then I’ll wear that dress to work, and even before I get there a stranger will say to me, “That dress looks so good on you. So bright and cheery.” That’s what happened with this dress that I bought in Texas, on a day when I wasn’t actually shopping for anything, which is why I wear it on occasions when I need to look good. That’s why I like it so much. Somehow, it just seems to suit me.

A WHIFF OF MIRROR

My mother was a farm wife. The smells of our home gave evidence of her daily labours. She would come in from gathering eggs at the henhouse, visiting bantam chicks in the barn straw, chasing cattle in the pasture, or gathering pungent cucumbers from the garden. The table would host a huge bouquet of peonies or sweet peas. The kitchen would be fragrant with the odours of apple pie, hot coffee, chocolate pudding, spice cake, pickled beets,, steak in the frying pan. At any given moment, Mom smelled like any of these. A few times a week we would go somewhere, she and I. It might be down the road to the monthly meeting of the Cambridge Ladies’ Club, or into town for groceries. She would say, “Wash your face. We’re going soon,” and I’d put on my shoes, wash my face and be ready in a flash. Mom would be ready—after a while. For her, the process of getting ready required two things—an endless amount of time and a mirror. Standing in front of it while I took my shoes off and on, off and on, she would fastidiously apply cold cream, foundation, face powder, lipstick, eyeliner, hair spray and finish off with a few dabs of perfume to the wrist. I never could see the point of mirrors, likely because I couldn’t see anything when I stood before a mirror. I never knew how my mother looked. Somebody once asked me what colour her hair was and I couldn’t dredge up that information. It had never once occurred to me to wonder about it. And so, when I think back to the days of waiting for Mom to finish with the mirror, it is not the way she looked that I recall, but rather the way her time in front of the mirror changed the way she smelled.

A TOUCH OF MIRROR

We discovered the mirror in the early days of our marriage. Those were the days when we felt the need to economize, the days when our relatives held secret conversations in their living rooms about how tight-fisted we were with our money. The mirror was displayed on a wall in Woodwards Southgate, on the second floor, at the top of the escalator. “There’s a beautiful mirror here,” David said as we stepped off. “Come and touch it.” The mirror was a tall and skinny thing. It would have been four-sided, had the corners not been angled to form eight. Approaching it with a giggle, I imagined myself planting a fingerprinted hand squarely in its centre, an act which would surely have been disdained by my mother. But alas, it was the mirror’s ornate edges he wanted me to touch. The reflective surface was bordered by small rectangles of cut mirror, fit together like puzzle pieces, the joins smoothed by fancy sculpted gold-coloured metal. At each of its eight corners there was a small gold flower. “Shall we buy it?” I queried. I could not imagine buying it, but it was unusual for him to be drawn to such a frivolous thing. “No,” he said. The price tag read “$237.00.” The mirror hung in Woodwards for many years, waiting to greet us. I used to wonder if it missed us when we were on vacation. Every few weeks we would go to Woodwards and ride the escalator to the second floor, sometimes just to visit it. “Shall we get it?” I would query. “No,” he would say. But there came a time when the ride up the escalator was filled with anxiety. Store displays do not last forever. What if, one day, we rode the escalator up and faced—faced something else other than the mirror? The moment of truth finally arrived. We bought the mirror. One big purchase deserves another. We also bought fuzzy tactile wallpaper—the kind that costs more than paint. We hung the paper on the wall at the top of our front stairs and strategically placed the mirror upon it so that it would greet each person who climbed the steps. Sometimes I would stand before it and run my fingers along its fancy edges, always a little surprised that I, a blind person with a reputation for frugality, had spent $237.00 on a mirror.

A WEEKEND IN MILWAUKEE

I have spent my entire adult life with a man whose first instinct is always to help others. It could be that our mutual attraction took root for this reason. People who have disabilities have a natural affinity for those whose first instinct is to help others, particularly for those who do it automatically, making it appear to be effortless, seldom expecting either recognition or reward. I have benefited from the attention of many friends of this type, but only one of them has made the ultimate commitment of living with me. I have sometimes thought that my life mate is his own worst enemy. His helping costs him time, energy money. I have sometimes thought that I might be his worst enemy. I like to help others also, and many of the things I volunteer to do for others end up involving him as a support to my helping efforts. It did not surprise me when he offered to help me take aquacise classes. I had a bad back that needed pain relief. He said, “It won’t hurt me either. I feel a bit stiff when I exercise at the gym. Going to the gym was one of the things he did for his own benefit, but he looked for a way that he could help me at the same time. It didn’t surprise me when he offered to drive me to classes in the Alexander Technique. I thought it would help with my bad back. But it did surprise me a bit when he said he would also take Alexander instruction. “I could probably use a bit of help with posture and balance,” he said. We have spent many happy hours exploring unfamiliar cities. Last weekend we went to Milwaukee. Milwaukee is the city of historic breweries, and the filming of Happy Days. Its streets sport the unpretentious homemade brick buildings that formed the backdrop for the simple working lives of the likes of Laverne and Shirley. We did not have time to see any of this on our visit to Milwaukee. Our time was spent at a medical conference in a suburban hotel marooned in a concrete jumble of major highways, choked off by acres of parking lot that feed entry into the malls and restaurants of the big-box era. It was the kind of conference to which I am often recruited as a speaker on hope, a collective of knowledgeable doctors gathered together by a collective of tireless volunteers to provide information on a rare disease to patients and their families. If such a conference were held at an interesting location, I would go as a speaker, and my life mate might join me as a speaker’s helper. But this conference was different for us. Nobody knew I was a student of hope. In this strange environment where every person present was a new introduction, he was a patient, and I was family. “I’ll take notes on the presentations,” I promised myself. “I’ll wait until later to think about hope.” Much of the talk was about the consequences of cerebellar atrophy—problems with balance, with stiffness, and so many other things for which the medical profession has no immediate remedy through pills or surgery. Each of us filtered the information through our own experience, our hopes, our fears, the plans we ought to make. My life mate, we observed, appeared to be among the very healthiest of all the patients at the conference. His relative health might be attributed to our proactivity in noticing change and presenting the story to doctors. It might be attributed to our audacity in attending such a conference at an early stage. It might be attributed to chance. One theme wound its way through the endless data presented by the professionals. Each one of them stressed the value of taking charge. “Do all you can. Keep yourself in shape. Prevent yourself from losing ground. Exercise. Work with your abilities.” I thought back to things that had been helpful at early stages, to aquacise, to the Alexander lessons. I thought how those sustaining therapies had been put into place before we had the awareness to measure their effects, before we had acknowledge the influence of a problem that reached beyond the limits of the decline you can expect as a result of aging. And then I remembered that these things came to him in the process of his volunteering to help me. Could it be that there are times when those with the strongest helping instincts are not their own worst enemies? How often have I met wonderful people who, in helping others, have been their own best friends? Ultimately, when it comes to hope, the part of my world that is hopeful has, within its boundaries, a lot of helpful people.

PANIC

It was August 26 when Panic hit me—knocked out my breath and set my knees to trembling. Somehow I had managed to keep her at bay with soothing words, with promises. “Don’t panic,” I had said to myself. “You know you never miss a deadline. There is still time.” And with those simple words, with the promise of time, Panic had been persuaded to hide backstage, waiting for the right moment to strike. Even in the summers that aren’t so great, summer is a marvellous time to let yourself lose sight of deadlines. Time stretches out in a summer, stretches out and flies away. Go on holidays and you soon get to wondering if it’s Tuesday or Thursday. Time gets distorted in the summer. But the ultimate, inescapable problem with time, in the context of a deadline, is that there gets to be less and less of it. Every unused day before a deadline is a day you never, ever get back. All through the spring and summer I had been looking forward to the pleasure of losing myself in whatever stories I would develop for the T.A.L.E.S Fort Edmonton Festival on the Labour Day weekend. Storytelling, after all, is a hobby, a pleasure. I had been promising it as a reward to myself, since I had not been writing THE HOPE LADY Blog, and writing always helps. But more to the point—in relation to the panic—I had also promised one 15-minute concert story and one 50-minute story performance to my hard-working, ever-faithful colleagues at T.A.L.E.S. The concert story would be about light. I had promised it for August 31—a story to pick up the threads from a beautiful song to be performed by The Once, a folk group from Newfoundland. The 50-minute performance, a montage of folk tales and personal reflections about mirrors, was promised for September 1. It was April when I first made the promises. None of the folk tales about mirrors had been located. None of the personal stories had been written. But it was all highly possible, back in April. It was May when I signed the contracts. May was followed by June and July and 25 days of August when I did absolutely nothing to move the project forward—nothing except for thinking occasionally about it, then shooing Panic back into the wings. At a certain point, when I was no longer certain that the project was possible, I turned to Hope. In fact, it was a hope statement that caused the panic. I woke up on the morning of August 26 and said to myself, “Don’t worry about the future. Why, just think, a week from today your stories will have already been told.” When Panic heard this, she rushed forward and knocked the wind out of me. “Worry, you idiot!” she shrieked. “You have left this so late, you’ll need a miracle. I have heard too many excuses about having writer’s block, and being on holidays, and spending time with little Ben, and dealing with all the issues in your life! This time you have pushed me too far!” Then she shook me so hard I saw stars. And so it was that, in Ontario, on the road between Long Sault and Gananaque on the morning of August 26, while sitting in the very back seat of a rental van, I took out Mona the iPhone and launched an Internet search for folk tales about mirrors. This is how it all ended. A concert story was performed in Edmonton on August 31, and a 50-minute set was performed on September 1. I have the recordings to prove it. I did the hard work of preparation. I did the suffering. But Panic is taking all the credit. These days Panic is feeling pretty smug—pretty proud of herself. “Bow for the applause,” she sneers, “but let me just say that you couldn’t have done it without me.” And, reluctantly, I have to admit that she is probably right.