WEDNESDAYS

It’s Wednesday. I like Wednesdays, always have. In school days and work days, Wednesday was the point of departure. A week that started out well was going better by Wednesday. In a week that started poorly, the arrival of Wednesday heralded the promise of hope for the weekend. Even in retirement, Wednesday has held a bit of magic. I think of Wednesday March 11 as the most recent normal day of my life. It contained a bit of everything: the happy routine of bridge club, the pleasure of lunch with a friend, the satisfaction of successfully shopping for a new purse, the excitement of packing for a couple of nights stay at my sister’s house, and the wonder of gently singing a dying woman into a deep and peaceful sleep. Today is Wednesday. It is almost 10:00 and I am still in my housecoat. Later today my son will drive by, roll down his car window and hand me an envelope while giving a cheery greeting and telling me he loves me. Who knew He’d start shouting those words in public? I will take a walk with my neighbour. Several weeks ago we decided to form a bubble around ourselves and protect each other from the possible dangers of spreading a virus through close physical contact with others. I will call one neighbour I haven’t spoken to in a month of isolation. I will talk to a relative who has tested positive for COVID 19. I will answer whoever phones me—possibly being rude if the call is a junk call. Being rude can be fun. I will join a storytellers’ meeting on Zoom. I will cook myself a balanced supper and eat it slowly while watching back-to-back episodes of Frasier. I will record a story on the iPhone and send it to friends, because I have decided that every Wednesday will be Story Wednesday until life gets back to normal. There are many things I will not do. I will not play bridge with my buddies, or dine at a restaurant, or enter a store, or pass through the door of a long-term care centre, or plan a trip. Even with all the things you cannot do, it is surprising how much you can get done on a Wednesday!

NORMAL THINGS ARE STILL HAPPENING

There comes a day, a few days after the March equinox, when the sun directs a morning beam into my bedroom. It happens just after 7:30 and lasts a minute or so, just after the northerly sun rises enough to peak out from between some buildings on the next block, Just before it angles up to hide itself behind The Athabascan next door. The conditions for observing this phenomenon have to be exactly right. You might miss it the first day or even the second. You’d never see it if you weren’t in the bedroom. You wouldn’t see it on a cloudy morning. I saw it on April 2, 2020. I wasn’t looking for it. I was just talking to myself about getting out of bed and there it was! A ray of hope projected itself across the room from the angled window by the bathroom sink to land on the wall by the mirror over the dresser. “Normal things are still happening,” I said to myself. “This is only one of them.” I know a woman who gave birth to a healthy child in the maternity ward of a local hospital. Pigeons are circling our building, looking for friendly balconies. Neighbours are still spreading rumours. Friends are still making me laugh. Neglected friends are still delighted when I remember to call them. Pandemic buzz is consuming us all. Everybody seems to be talking about the new normal. I am taking some comfort from noticing evidence for the old normal. Perhaps I shall be a little more conscious of watching the morning sun as it alters its trajectory, lingering a bit longer every day until the summer solstice signals a reverse of fortune. It’s part of the old normal that will secure me. Here, in my new normal, I’ll have the time to notice it.

MOVIES

David and I spent 47 years together. During that time we saw very few movies. We were not much harmed by this lack, but it did stunt our capacity to participate in conversations about movies and to enjoy watching the Academy Awards. We might have watched more movies had it not been for the combination of two factors: David was a loud whisperer and a quiet sleeper. Had he been a quiet whisperer and a loud sleeper the situation might have been entirely different. But then, if I had been a sighted person rather than a blind person, none of it would have mattered. Movie theatres were fewer, larger and more crowded back in 1972 when our dating life began. We would wait in line for tickets and wedge into seats among strangers sitting beside, in front and behind. Things would be fine in this cozy environment until David would notice something happening on the screen and determine that I needed to know it. Then he would whisper a description—sort of whisper--more like a mutter really. “They’re walking across a street. Really tall buildings on both sides.” It suited me fine, but our fellow watchers didn’t like it much. If you listened carefully, you could hear them grumbling. “Quieter,” I’d whisper. It was my best advice, but he didn’t like it much. “I can’t be quieter,” he’d mutter. “Try harder,” I’d whisper—well, maybe it was more of a yelling whisper. Nobody liked it much. Not David. Not the people around us. Still we soldiered along for a while, searching every theatre for the least inhabited space where David could mutter descriptions. If there was one point, one single event that changed our behavior, it was likely the evening when we bumbled obliviously into a German movie with English sub-titles. Five minutes later we were back in the lobby, beging for a refund. “Other customers don’t like it when I read the subtitles to Wendy,” David sanctimoniously explained to the reluctant teen-ager behind the cash register. With no manager on site, he cut his losses and refunded our ticket price. It seemed that many people might be better off if David and I watched TV movies at home. Fortunately, he was a good-natured guy. If he regretted exchanging the big screen for our 13-inch black and white he did not complain. We would find a comfortable position, quite often lying on the couch together. The movie would start. He would describe the action in a normal voice. All would be well. As the movie progressed I would find it easier to follow, being familiar with the characters and what they might do. There was not so much need for help from David. But every silver lining has its cloud. While I was following the plot, he was falling asleep, only I wouldn’t know it, his being a quiet sleeper and all. “Bang bang!” a gun would shoot. “Who got shot?” I’d demand to know. “Shot? I don’t know,” David would reply sleepily. “Why didn’t you wake me up?” This is how a tiny spark of lovers’ quarrel blows into a raging blaze. “If you loved me you’d stay awake,” I’d shout. Neither of us liked it much. We were happily married, perhaps because we learned to reduce the possibility of those bang bang moments. They seldom occurred if we limited our movie watching to movies we’d already seen. Take, for example, The Sound of Music, or It’s A Wonderful Life. Now that David is gone, I find to my great surprise that I am watching a lot of movies, as many as one a day, sometimes two in a row, occasionally three. The stars have aligned to make it possible. Shaw channel 49 shows nothing but movies, I have plenty of spare time, and things have changed more than you might imagine. There’s no longer much need to whisper to blind people in theatres. Many movies now come with description for the visually impaired. You can ask the ticket clerk for a little machine with earphones to hear the extra information. At home you can push a few buttons and if they have recorded description you can hear it on your TV along with the movie sounds. There are many movies which have not yet been described. These are annoying, but now there are options that don’t require the participation of a spouse. If you need to know who shot who when a gun bangs, you can always get the anser in a full plot outline from Wikipedia. You don’t build up much movie history watching one or two new movies per year. The films I watch these days, so old to others, are new to me. You might recognize some of the names: To Kill a Mockingbird, Steel Magnolias, The bells of St. Mary’s, In The Heat Of The Night, Casablanca, Funny Girl, the Judy Garland version of A star Is Born. With great relish I drop their names in conversations with friends, mentioning plot details with such vivid intensity that I might have heard them only yesterday. Those who haven’t seen these movies in four decades are left with the impression that I am a remarkable movie enthusiast with a fabulous memory. Of course, when you discuss movies with friends, the topic inevitably turns to modern movies, to recent and future academy awards. In this realm I am no wiser than I used to be. But reputation is everything. Having already established myself in their eyes as a movie expert, I find it convenient to sit back with great interest and ask for their opinions.

NORMAL (Nursing Home Life, part 11)

Feeding a pureed supper to David in bed is one of the jobs I’ve taken on here at Laurier House. Given the choice, he would prefer to be chewing his food, feeding himself with a fork and sitting anywhere other than in bed. Butt here he is. I am feeding him because he chose me for the job. Being chosen for this task is one of many surprises in my current life. My previous puree experiences occurred nearly four decades ago when our children were babies. In preparation for parenthood I had read a book that suggested the need for a blind feeder to locate the mouth of the fed-one with one hand and hold the spoon with the other. I tried it on Baby Mark. Mark, at a tender age, had yet to achieve a command of language. Despite this barrier, he was clearly able to communicate. He responded to my first attempt by making a rule for living: Never allow yourself to be spoon fed by a blind person! Here was his reasoning, so far as I could understand it at the time. “A blind person wielding a feeding instrument is a dangerous character. Trapped in your high chair at the mercy of such a person, you could lose an eye, snort peas into your nose, or later find yourself fishing chicken out of an ear. At the very least you might get a sloppy chin. Fortunately for Mark and the siblings who followed him, mothers are known for their ability to understand the wishes of their babies. The situation might have posed a problem were it not for the fact that David was quite willing to feed the children whenever feeding was required. I responded with benign acceptance. Apparently it never occurred to me to assert my competence, or my right to be treated equally as a mother. I did not feel slighted or rejected, and if I felt any regret I have forgotten it. The question of my using cutlery to feed anybody was laid to rest. It rested in peace for nearly four decades. We moved to Laurier House in preparation for the time when I would require significant help in order to meet David’s needs. That said, it would have been difficult to predict in advance which needs would be met by the staff and which would be met by me. Choices have been made at various points along the way. David is a fully-informed adult, definitely not a baby. So when I give him a choice about something, I try to ensure that it is a real choice. I recall the way we used to present choices to our two-year-olds when we were trying to rush out of the door in the mornings, already at risk of being late for work. : “Shall I put your shoes on now, or in fifteen seconds? Shall I start with this shoe or the other shoe?” So perhaps I ought to confess that it was a little disingenuous for me to ask a question when I never doubted what the answer would be. In my mind, there was only one choice. Nonetheless, I asked the question. “Would you rather be fed in bed by me or by the staff?” “You,: he said. “Me?” I said. I thought I must have misunderstood. “You,” he said. I didn’t ask for an explanation. It seemed wise to assume his choice was motivated by love. “Shall I use a spoon or a fork?” I queried, blundering uncertainly through this uncharted territory. “Spoon,’ he said. No doubt about that answer. The man still values his eyes and recognizes that his nose is more vulnerable to a misdirected fork. I see now that there was wisdom in the book I consulted so long ago. If you are a blind person who has been chosen to feed another person you can use one hand to find a mouth and the other to guide a spoon. A bib and a cloth will help you compensate for any errors you might make. This is our latest version of having dinner together at home in this unlikely place. I feed David while we watch the 5:00 news. And where are the children whose mother never fed them from a fork or a spoon? Well, just the other night Mark brought two of our grandchildren to stay with us while he tooke their mother to dinner. He brought food for them. The youngest of Mark’s children is Baby Lewis. Baby Lewis doesn’t talk yet, but his mouth is sporting two beautifully sharp teeth. I positioned his little chair near David’s bed. There he sat, scooping fries into his fists, using his built-in blades to saw them off. While he ate, he watched me use two hands to feed Granddad with a spoon. His sister Carys sat nearby, two-and-a-half years older and a thousand times wiser. The nurse who brought David’s puffer seemed a bit surprised to find us there, but to the four of us, everything seemed quite normal.

A POSSIBILITY

Contrary as it seems There may be times When winter is beautiful Because the sun is brilliant And the snow is new With chrystals everywhere And the wind forgot to blow So the air is snappy And only a little cold And every neighbour who lives by the river is walking a dog on the park path. Yes, there may be times When winter is beautiful And if there are any Then today is one of them.

BEN SAYS GRANNY

Ben’s mother sent me an email. The email came from Ontario. “Ben can now say five words,” she announced. “He can say Eyra—the name of his girlfriend at the babysitter’s, mama, dada, hi and amen.” Just to prove it she sent along a little video. Mama said: “Aaaaamen!” Ben said: “”Aaaaamen!”SThere it was, plain for all to hear. The proof was in the video. Now I was as proud as any respectable grqandperson could be. But I couldn’t help but feel that something was missing. So I did what any self-respecting soul might do. I bought a ticket, jumped on a plane, and headed for Ontario to come to the aid of that baby who needed somebody to teach him how to say: “Granny.” Even as I gave the travel agent number on my MasterCard I knew the job might not be easy. It is true that I am a granny, which means I am also a mother. And it is also true that my three children grew up to be perfectly competent talkers. But I am too old to remember just how they learned certain words. Fortunately, I am old enough to remember how my little brother learned to talk, way back when I was six or seven years old. At the time I figured he was beyond hope. Little brother grew up to be a capable talker, despite some rough beginnings. He made more than a few mistakes in his time. Mom always took his side when I pointed out how dumb he was. I specifically recall one day when he was farming on the kitchen floor, loading grain into a transport vehicle, naming that vehicle over and over again. Perhaps he would have attracted less attention if he had been saying, “Luck, luck, luck; or muck muck muck.” “The f sound,” Mother explained, “is easier for babies than the tr sound.” Like the tr sound, the gr sound is not an easy learn for a pint-size baby-talker. And I only had three days in which to teach the “gr” word to Ben. So wepractised hard right from the beginning, teaching the way any good teacher would teach. I started with the five words he already knew, asking him to repeat each after me. Granny said: “Mama!” Ben said: “Mama!” Granny said: “Dada!” Ben said: “Dada!” Granny said: “Hi!” Ben said: “Hi!” Granny said: “Eyra!” Ben said: “Eyra!” Granny said: “Aaaaaamen!” Ben said: “Aaaaamen!” I am pleased to report that we made tremendous progress in only one long weekend. By the time I left for Alberta, Ben could say “Granny.” It was as plain as day to anybody with a little imagination. Sometimes it sounded like mama, and sometimes like Eyra. Sometimes it sounded like Dada, and every so often, it sounded just a bit like Aaaaaamen!”

THE FIRST WALK OF WINTER

Pirate: I want to go for a walk. Me: Okay. But it snowed, you know, and it’s cold out there, you know. Pirate: I want to go anyway. Me: Okay. Pirate: (1 minute out) I don’t like the snow. Me: Me either. Pirate: (1.5 minutes out) I want to go home now. Me: Me too. And the lady on the radio said: To increase your stamina, just increase your exercise time by ten percent perday. 180 seconds round trip today 198 seconds tomorrow 217.8 the next day 239.5 seconds the next day 263.4 the next day Wow!!! We’ll be upto a 5-minute walk in no time!!!

BABY TALK

Pirate: I am one lucky dog! Kitty: oh yeah? Pirate: Yes. Want to know why I say I’m a lucky dog? Kitty: I suppose. Pirate: Well, you know that baby we’ve been seeing—the one that changed Wendy’s name to granny? Kitty: Yeah. Pirate: and you know how you told me that he would be chasing me around the house, pulling my TAIL, eating my food, and getting me scolded for growling at him? Kitty: yeah. Pirate: Well, I’ve seen him three times now kitty, and I’m thinking you’re wrong. Kitty: I suppose it could happen. Pirate: The first time he came to my house it was March. I guarded my food, I stayed far away from him and I curled my tail as tight as I could. He just laid around on various laps. All my effort was wasted. Kitty: and? Pirate: The second time he came it was July. I guarded my food, I stayed far away from him and I kept my tail curled tightly. He just laid on the floor blowing bubbles. All my effort was wasted. Kitty: And? Pirate: the third time he came it was September. I didn’t bother guarding my food. In fact, I didn’t even need so much of my food because of the yummy stuff he dropped on the floor for me when he sat in his high chair. When he finished feeding me, he’d sit on the floor and roll onto his tummy. Then he would raise himself on all fours, almost as if he were a dog. He looked right at my tail, gave me the most beautiful smile and said, “ehh! ehh!” I thought “Now I’d better be careful.” I’d look straight at him and curl my tail tightly. Then he’d push with his hand until he crept backwards. Every time he pushed he got fartheraway from me. He’s harmless kitty. I tell you. You ought to be more optimistic. Kitty: And what will you do when he learns to creep forwards? Pirate: Oh, I’ve got it all worked out. Every day now I put my tail behind me and practice walking backwards. Kitty: you can lead a dog to enlightenment, but can you make him think?

ALBERTA HEALTH SERVICES INSPIRES THE HOPE LADY

The Alberta Health Services CRIS Clinic is one of the hopeful places I go these days. You can find me there on Tuesday and Friday mornings. Though I have no official role—for I am neither employee, volunteer nor patient—I think the CRIS Clinic is doing me a lot of good. It is giving me hope. The CRIS Clinic is an interdisciplinary rehabilitation centre for people plagued by neurological maladies. On a Tuesday or a Friday its services are provided to people who are impacted by strokes, Parkinson’s, multiple sclerosis, and undiagnosed conditions that play havoc with the relationship between the brain, nervous system and muscles. They get speech therapy, physiotherapy, occupational therapy and recreation therapy. The therapists encourage the patients to bring supporters. That’s how I got there. The supporters do whatever they can do. I take constant notes (a lot of things are said and tried in 2 hours and 15 minutes of therapy). I report progress I have noticed. I cheer when milestones are achieved. I participate in activities to make them more fun and friendly. I join in practice sessions between therapy days. In my time as The Hope Lady I have often criticized our health system for ignoring so much of the best knowledge about how human beings achieve good mental and physical health. . I have often said that patients are poorly served because professionals work in isolation, at best reading what other professionals have written, too often making excuses for not reading it, saying they don’t have time. I have despaired at the way in which hospitals organize themselves so that a patient seldom sees a nurse two days in a row. I have railed against a system where no doctor seems to take responsibility for a whole patient and surgeons operate on people they’ll never meet. And so, as an example of how a health system can work, the CRIS Clinic is doing me a lot of good. Much of the work is done in a large open area. As I watch and listen on Tuesday and Friday mornings, I am blessed with evidence that the literature is not going unread in all places. Therapists set goals with the patients. They meet between sessions to review goals. They ask advice from others. They believe in the power of emphasizing areas of improvement. They involve supporters in every step of the process. These are exactly the things the literature says we ought to do. No wonder I get to see patients making genuine progress on tasks both ordinary and monumental, catching balls, jogging backward, speaking loud and clear sentences, manipulating screws with hands that had threatened to stiffen, rising from one knee, walking straight lines, making plans for skating. For a hope psychologist, it’s a fascinating place to study reciprocal interaction. The patients work hard because the therapists work hard. Then, the therapists work even harder when they notice that the patients are working hard between sessions. You can see how progress takes shape, how it motivates everybody. I hope the CRIS Clinic gets the positive recognition it deserves. This post is my contribution.

WISHING

“To a resolute mind, wishing to do is the first step toward doing. But if we do not wish to do a thing it becomes impossible.” Robert Southey This morning I sent an email—the way so many emails are sent, in a hurry, possibly with too little thought. Caution—as so often is the case--had gone temporarily into hiding, waiting for the email to be sent before appearing to issue a warning. “Be careful what you wish for,” it ought to have said. There are times when I have undersold the power of wishing. Wishing, I have often said in presentations, is for birthday candles, and Disneyland, and the times when I buy a lottery ticket—because I have some extra money, not because I expect to win. Wishing, I have thought, is worth doing because it’s fun. It’s inspirational. But as for being useful, well, that’s another thing entirely. It’s this casual, off-hand idea about wishing that has led me to wish for things. The thing I love about wishing is that it puts you in a magical place, a playful place. The easiest things to wish for are those things you utterly believe to be impossible. This morning, for example, I sent an email that said, “What I wish for now is magic spit with the power to cure. If I had that, I'd rush right over to your place and spit in your eyes.” It was meant to be a wish of comfort, a show of compassion, an invitation to laugh, a longing for the power to make something better. It was only after the email had flown irretrievably into the land of cyberspace that I paused to contemplate its full implications. Already my mouth was feeling a little dry. Is it possible, I wondered, that wishing for spit with curative powers could be the first step in getting it? Oh, I know what you are probably thinking. You’re probably wondering: Who is she to imagine the power to create magic spit with a simple wish? I know you’re thinking this because I have thought it myself. But I’ve been reflecting of late on a few wishes I made in the past—offhand wishes, wishes for seemingly impossible things. I have been remembering other wishful thoughts, and the scenarios that unfolded. Once upon a time I wished for a newspaper column. Of course, I didn’t know if I could handle a newspaper column, in fact, I was almost certain that I couldn’t. It was meant to be a whish that I would write more—the kind of writing I like to do, short writing. One time I even did a little experiment with the idea. I wrote a bit and I sent off a few packages of writing to some newspapers. Nobody wrote back to me. For many years that wish rested dormant, in absolute comfort. Then one day, not too long ago, somebody who never knew anything about the packages offered me a newspaper column—a chance to write once a month about anything I wanted. I was so surprised I almost turned it down. Panic seized me. My friends thought I was being a drama queen. “How can you say you can’t do it?” came the cries from around me. “You’ve been writing a blog for six years.” Coincidence? Maybe. Then there’s this other once upon a time—one that happened a bit earlier. I used to wish for an honorary degree. It was such a ridiculous wish that I felt perfectly safe in saying it out loud to lots of people. I said it for years and it got a good laugh wherever I said it. It was meant to be a wish to be freed of the ethical imperative to correct every person who mistakenly referred to me as Dr. Edey. But one afternoon somebody I had never met called me up to say that I had been chosen to receive an honorary degree. He wondered if I would accept it. Panic seized me. For a few unprecedented minutes, I was utterly without words to reply. No doubt the caller was having serious reservations about my ability to make the required acceptance speech. My friends thought I was being a drama queen. “How can you say you can’t have it?” cried the voices from around me. “You already got it. Stand up there and prove you deserve it.” So here I am, the bemused holder of an honorary degree, looking toward September 24--my first column copy deadline, acknowledging that I wished for both a degree and a column without fully contemplating the consequences of having either. Add to this the burden of having wished for magic spit with curative powers, and a few thousand other impossible things, and you can see why I might be feeling a little bit on edge, a little cautious about making wishes. But what could be more ridiculous than to give up wishing? For how can we possibly envision outcomes beyond our known limits if we prevent ourselves from wishing for them?

THE HOMEY SWEATER

Some things last longer than you expect them to. So it is with the wear-it-around-home sweater I call my homey sweater. My homey sweater doesn’t look like a sweater that wood last. Woven from some mysteriously stretchy yarn in a pattern resembling the popcorn stitch, you’d think its fuzzy edges would catch, pull and disintegrate to strings and balls. Believing I might only have it for a short time, I wore it sparingly when first it came to me. I met that sweater in September 2005, a bright, breezy September like this one. Early mornings arrived with a chill. In all other ways, that September was different from all others before and since. On the nights when I was able I drowsed brokenly on the cot in Mom’s hospital suite. Palliative Care was marked on the door sign. Every few minutes Mom would cry out and I would speak softly to her, stretching out the time, ramping down the tension, knowing it was too soon for the next painkiller. I’d read to her, tell her stories, sing songs, make promises. If she could be calmed she would rest again. I would doze again. Mornings dawning that September brought brilliant sunshine, chilly breezes. I’d lie a few moments of quiet, waiting for something to happen. When the hospital lights went down and the halls began to stir I would collect my weary self, grab a sweater from the end of Mom’s bed, and step out onto the patio. Closing the door behind me, I’d make phone calls, to Dad, to David, to my kids, to my sisters, to my brother. “A restless night,” I’d say. “We’re okay. See you later on.” Snug in Mom’s sweater, I’d hover in the ever-increasing swirls of autumn leaves, wondering how long it would be, how many more mornings I’d be here, how many mornings Mom would be here. The air was crisp, not the air of summer. Months ago I had wondered this. “We are talking in terms of weeks,” a doctor had said, back in early July. Back then, with work in its summer slowness, I easily developed the patterns of spending time. Work could wait, other things could wait. Now, with September pushing forward, promising October soon behind, people were looking for commitment from me. “I don’t know if I can be there,” I would say. “I might be there. You’ll need to have a back-up plan in case I can’t.” There was a back-up plan for a weeklong course I would have taught to health care staff from Manitoba. There was a back-up plan for a speech at the Canadian Palliative Care Association on September 28, and a good thing too, because that was a day when I could not make it. “Use the time you have,” I said to myself. “Stay here for the time you have.” The day when I would have been speaking on hope in palliative care was the day when we at last gathered up the things that had been brought to Mom’s room over the past few weeks. There were magazines and slippers, Tupperware containers, flower vases, bags of candy, packages of cinnamon buns, the accordion I had played to comfort her, assorted articles of clothing. We carried it all to the car. My arms were full. I wore Mom’s sweater out the front door, the efficient way to transport it. After so many hours spent inside, I haven’t been back in that room or on that patio since. Mom’s sweater was a white sweater, looking quite new at the time when first I began to wear it, not so old even now, though seven years ought to have dimmed the memory of how it felt to shrug in and out of it during that distant September. It’s the kind of sweater you wear, and wash, and wear, and wash and wear again. It’s light on your arms, warm in the cold, , a warm sweater that breathes, the right arm length, the right waist length. It is a comfortable sweater. I could see why she bought it, why she took it with her to the hospital. It seemed fragile when I took it home. “I’ll keep it for a while,” I said. “It won’t last long. It will be stained. It will snag. It will go to balls.” At first I wore it sparingly, not wanting to face the time when it, like Mom, would move beyond my reach. But that homey sweater has staying power. It travels about the house, perching on newel posts, hanging on the backs of chairs, resting on the back door bench, even hanging in the closet occasionally. Still reasonably clean, still reasonably free from snags and balls, it has lasted much longer than I ever expected. That sweater never minds being shrugged off wherever I leave it. It waits for a chill. “Put me on,” it beckons. “I will warm you. Use the time we have.” It’s my homey sweater.

ON SEEING AND READING

This morning, in the waiting room at the Cancer Institute I suddenly remembered the first time Lawrence and I went out for dinner. We were unlikely dinner dates thrown together by fate, mother and son hungry at suppertime. He was a teen-ager with a driver’s license. I was an ineligible driver with car keys. Everyone else in the family was—somewhere else. It was back in the days when I used to cook for him. Not surprisingly, it was I who suggested going out.
“Where would we go?” he asked. Scepticism hung heavy on the air.
“Wherever you like,” I said brightly.
“MacDonald’s,” he said.
“Anywhere except MacDonald’s,” I said. I had, after all, been thinking of going out for an actual dinner. Surely he didn’t want MacDonald’s! We could walk there.
“Oh Mother!” He gave one of those sighs that conveys everything without saying anything. “It has to be somewhere where we can order,” he said.
And now I understood what he was thinking. Considering our particular blend of disabilities, we were an impractical match for a dinner menu—a mother who would be able to read if she could only see, and a son who could see but not read. He was imagining the two of us staring blankly at a menu, neither with a clue as to what was on it. He was wondering what we’d say to the waitress, what kind of food we might get if he simply pointed at random to some item, hoping it was a burger.
Given the amount of creativity it might have taken to overcome this difficulty, I did think it probably would have been easier to stay home. But once you’ve imagined yourself out for dinner, it’s hard to let that go. So we went to Boston Pizza and managed well enough, or so we must have, because I don’t recall any memorable trauma.
These days we never go out for dinner, though we occasionally go somewhere together. Today our destination was the Cancer Institute, a stupefying jumble of scurrying professionals, snaking hallways, directional signs and forms requiring due diligence. Going out to dinner at any restaurant would have been a better choice. But this was not a menu with choices. Cancer institutes carry a lot of weight. If they tell you to go there on October 1, you go there on October 1, even if you have to go with your less-than-completely-helpful mother.
There are really two problems that arise when you cannot read. The first is that you cannot read, a condition that makes it difficult to know where to go, what to do, and what you might be giving written permission for in a busy hospital. The second problem lies in the explanation of it to others. For a blind person it’s easy enough. You show your cane and let them take it from there. If that doesn’t get you what you need, you swallow hard and say, “I’m blind. I’ll need you to read this.” Negligent as it may sometimes be, our culture, in general, is kind to the blind. But if you are not blind, and you are holding a set of car keys, and maybe you are even guiding a blind person, well, the situation isn’t quite so straightforward. Outside the professional realm, a variety of words are used to describe young men who function without the benefit of reading. They’re not fitting for a HOPE LADY Blog. I won’t mention them here. But even when nobody mentions them, they echo in the heads of those who are presented with English forms that might as well be in German or Italian for all the sense they make.
I wished I hadn’t gone with him. I wished somebody else was there in my place, somebody who could be a better help. I am a loving mother. Guided by the instinct of a protective hen, I would happily have sent him to the washroom while I whispered a request to the receptionist. “Please help my son read this form. It’s not his fault that he can’t read it.”
But he did not need the washroom, and he did not need me to explain it. I sat in the waiting room, waiting. He boldly told the lady she would have to read the form for him. He didn’t give her a reason, and she didn’t ask for one. You’d think that reading forms was the thing she was expecting to do.
Given the way things turned out, so much better than I expected, you surely can’t blame me for wondering if we should go out for lunch.

THE PARTY

On the night of my most recent birthday—an annual event that occurs only two days after David’s birthday—Mark cooked prime rib with fresh garden vegetables for dinner. I ate two helpings. The prime rib was delicious, and there was no need to leave room for dessert, seeing as how Tracey had baked chocolate cheesecake muffins for my breakfast, and we would be able to snack before bed on the last of the Mars bars squares she had baked for David. Their gift to both of us—a spiffy new webcam with tracking capability—stood patiently upstairs in the study, waiting for something to track.
Birthdays in our house have changed over the years. We used to celebrate them with David’s family. His mother loved to buy him his favourite cake. Then, when Ruth grew to adulthood, she would sometimes plan a party, a two-caker accommodating our differing tastes.
Though Mark grew up with birthday parties, his adult self never was one to celebrate birthdays. You could celebrate his if you liked. He’d never ask you to. You could tell him yours was coming and he’d forget, or maybe ignore your hint. But Tracey has brought about a change. Birthdays matter to Tracey. She has a generous heart, and birthdays lend themselves comfortably to some of her favourite pastimes—baking, shopping and giving. Compelled by her enthusiasm and her attention to the calendar, Mark has been transformed into a man who shops for birthday gifts. Once he has shopped for a gift, a point of pride, he gives it to you. “You might as well have it now,” he’ll say logically. “No point in waiting.” I look on in wonder. People change. How else can you account for it.
Birthdays in our family continue to change. Say what you like about tradition. The future pulls you forward. Mark disappeared while we sat at the table, sighing and chatting the way you do when you’ve eaten a bit more than you ought. Next thing we knew, he was urgently beckoning us upstairs to the study.
There, in front of the computer stood two cakes, a white Safeway cake covered in inches of disgusting white icing for those among us who prefer that, and a lovely chocolate cheesecake for me. There were candles to blow. Ruth and Derek were singing Happy Birthday into their webcam in Guelph. Thus began a most delightful cyberparty. It felt like fun. It was almost as if we were all there in the study. As we ate our cake, they were eating peach cobbler.
Who knows what the future holds? Who can possibly imagine? Will it be another year or two before some techy figures out how to share a cake over the Internet?

RE-VISIONING THE FUTURE

It’s been an interesting time for THE HOPE LADY, improbable brushes wit the unexpected, the impossible, etc. Many of you have been asking me questions, having read my posting of October 30. So here’s a little more of the story. But I warn you, it does go on a bit.
A couple of weeks ago I happened to come across a little article in the newspaper. This alone smacks of science fiction. I never quite get over the wonder of reading the newspaper. Once upon a time I was a child, playing on the living room floor, getting no attention from my family. They were in their own worlds, having divided the newspaper into sections, one section for each of them. At that time I never imagined that I would some day read the newspaper on a talking computer—I had never imagined a computer. But these days I take the computer for granted, only occasionally pausing to marvel at it, usually when I read the newspaper.
Anyway, I happened to be reading the newspaper when I came across a little article about the disease that caused my blindness
GENE THERAPY RESTORES VISION IN LEBER CONGENITAL AMAROSIS
I read the article a few times, half suspecting it would disappear. Sometimes things you thought you found on the computer do disappear. But this one didn’t. So I did a little more investigating on the Internet—have I mentioned how amazing it is just to search for things on the Internet—and that led me to a website for the University of Pennsylvania, a university that already stood high in my affections seeing as how it is a very prominent site for research in positive psychology.
I wrote to a doctor there who referred me to Toronto, and eventually I was referred to Dr. Ian MacDonald here in Edmonton. He was just getting ready to chair a research conference in Edmonton sponsored by the Foundation Fighting Blindness. Last Saturday my sister and I attended that conference.
At this point I really ought to introduce my sister Donna. We’ve been in this together since my beginning. She was in it first. Our parents were teen-agers when they got married. They were young, but they were anxious to settle down to a quiet life on the farm. Within the year they had a daughter, and soon they noticed her darting eyes. The first doctor they saw said she was totally blind. It was not true, a fact which soon became apparent to them. They were relieved, since another baby was already on the way. That one had normal eyes.
Donna’s vision was a bit of a puzzle. She could see objects, yet she walked right into an open trap door in the neighbour’s kitchen. There’s a scar on her chin to prove it. Along with the normal activities of farming and child raising, our parents busied themselves with everything that made sense to them. They went to doctors and faith healers. They read magazines and made inquiries about articles that relatives sent to them. One such article led them to New York, where Donna got some enormous lenses that enabled her to read print up close. In this way she devoured the World Book Encyclopaedia and the newspaper—an activity that blackened the tip of her nose.
I came along a little before her 8th birthday. There again were those darting eyes. Logically, they embarked on my raising with the sensible theory that she and I would be the same. We weren’t. My vision just wasn’t as good, though I did love the sun—a peculiarity since the sun all but blinded her. My love of the sun led Mom to believe that I would need a strong light for reading. They got me some of the New York glasses and Mom sat me down in a sunny window. She drew huge numbers in different colours. I stared at them in the sunlight and thus learned two things at once—my numbers and my colours. This was a bit of a victory. Donna couldn’t do colours.
School just didn’t work out for me the way it did for Donna, though it wasn’t for lack of trying. The janitor adapted a school desk with a large board and they clamped a lamp to the board. Then they placed my desk near a plug-in, far from all other desks. As a child one of my most fervent wishes was to sit close enough to somebody else so that I could get in trouble for whispering. They bought scribblers with huge black lines. They gave me my own black (really black) blackboard for my desktop and they drew things on it in bright white chalk, because it was easier for me to do math that way. At some early point in all this, my sister Sandra, a born teacher, circumvented everything and taught me touch typing, a skill she was learning in Grade 8.
With all this effort being expended on my education, it’s little wonder that people got frustrated. I would not do my schoolwork. Teachers said I was lazy. They said I wasn’t trying. Yet it was confusing, because I was learning the material. I was literate, I could do math. I simply refused to read more than a few words at a time.
Glasses were an issue. My day glasses broke on the playground. Mom was too busy to get them fixed right away. That’s when a canny teacher noticed that my playing vision seemed to be as good without them. That ended the saga of day glasses. My reading glasses prevailed for longer. Without them I could read nothing from a printed page. But my Grade 5 teacher sent them packing also. He sent the lamp away, moved me to a normal desk in a normal row, scolded me for whispering to my neighbours and started a process that got me reading Braille. By the time junior high came along, I was at Jericho Hill School for the Blind in Vancouver, and Donna’s black-tipped nose was tracing the lines of university textbooks. Thus we have lived parallel lives, she as a sort-of-sighted person with really bad vision and me as a blind person with a little bit of totally unreliable vision. I can, for example, see the light through the open train door of the LRT well enough to step through that door—but only sometimes. Other times I don’t see the door at all. Colours were lost somewhere in my forties, not a big loss, except at Christmas. Christmas lights just aren’t much fun these days.
Donna is still a really big reader. “Did you see the article in the paper about gene therapy for our condition?” I asked her a couple of weeks ago. She hadn’t seen it. Score one for me. But when we went to the conference last Saturday, white canes in hands, she put on her reading glasses and read us the agenda. Score one for her.
They believe that 350 Canadians have Leber Congenital Amarosis. At the conference we learned that they have isolated 12 genes for LCA. Somehow these genes mutate and if two people with mutant genes happen to meet up, one out of four of their kids might be expected to have the condition. Our folks beat the odds. They got two out of four. Having identified some genes, the researchers began experimenting on dogs, injecting genes into their eyes. The new genes turned on some photoreceptors that would have been turned on in a normal eye, and the dogs’ vision improved in the tiny spots where they made the injections. Now they are experimenting on people, people who have LCA2, one of the twelve genes. The results are very promising.
So now Donna and I are at the beginning of a new process. We have to be examined and re-diagnosed. Then our genes will have to be identified. Our names will be added to a registry, the FFB/CIBC registry. That will make it possible for us to be contacted if something comes up that can help us. Things are moving quite quickly, and though Donna and I may well be too old to benefit, our mother’s cousin’s child might benefit, being somewhat younger.
In the meantime I’ve been dreaming about what I would do with a little bit of extra vision. I could appreciate a few Christmas lights. I could step gracefully through a few more train doors. But even if nothing else comes of it, I’ll still have the thrill of being the only person I’ve met so far who noticed that little article in the newspaper.

THE DIFFERENCE BETWEEN NOW AND LATER

The need to be seen as a hopeful leader has taught me how important it is to recognize the difference between now and later. A clear understanding of this difference makes it easier to be hopeful in the face of anything impossible.
Right now many things are impossible, peace in Afghanistan, equitable distribution of wealth, and the solution of so many problems that I am asked to address in counselling. But who can tell what will be possible later? Who remembers the things that used to be impossible in the past?
For the first 55 years of my life I believed it was impossible to treat the condition that caused my blindness. I didn’t even know its name until I was an adult. Its name is Leber's congenital amaurosis. But what’s in a name anyway? Rather than hope for a cure, I pinned my hopes on other things and built the best life I could build, given the circumstances.
I had no need of doctors at that time, and they had little interest in me, for there was nothing they could do. Fifteen years ago the ophthalmologist who gave me the name told me that the researchers had begun to isolate the genes associated with Leber's congenital amaurosis. Having directed my hope elsewhere, I was interested, but only in passing. That doctor has long since retired. There isn’t an ophthalmologist anywhere who would know my name.
But these days it is not uncommon to read that people with my condition are being treated with gene therapy, are actually regaining useful vision. And though I have not yet found my way into the inner circle of professional knowledge and physician interest that would win me a spot among the candidates who might receive a treatment, I am beginning to poke at the edges of that circle, asking to be known. For the thing that has been good enough all these years—the idea that I need not consider something known to be impossible—is no longer a valid idea. The first 55 years was now. This is later.

WORRIES

I had a few worries when I came upon the idea of getting up early to do pool exercises before going to work.
I worried that it would be difficult to get up an hour earlier. I needn’t have worried. It’s not hard at all. I worried that the bus service at that hour would be unreliable. But the bus has been on time every single day. I worried that the water would be cold. I needn’t have worried. The water feels warm, not a shiver in it. Without my white cane to warn them off, I worried about bumping into fellow aqua-joggers. What can I say about that? Hardly anybody aqua-jogs at that hour! I worried that I wouldn’t keep going to the pool after it snowed. No worries there. It snowed last week just to test me, and I went anyway. I worried about crossing the streets that have no audible traffic signals at a time when there are few people to help, and not enough cars to let you know whether the light is red or green. I still worry about this, but not enough to make staying home an option.
There were a whole bunch of worries I didn’t have, though I can’t say for sure why I didn’t have them, given that my mind isn’t always as sharp as I’d like it to be around 6:00 AM. Be proactive was my motto, so I did try to ward off potential problems. I knew the little touches would make all the difference, like putting on my bathing suit under my clothes every morning, just to save time at the pool. If any problems came up, I felt sure they wouldn’t matter.
I was right too. After all, it didn’t really matter that I accidentally wore my pink sweater into the swimming pool one morning instead of taking it off when I undressed. I was able to button up the pink over-sweater so high that nobody at the office even guessed that the smart little matching sweater which should have been showing itself at the front was secretly drying in my coat closet.
And it didn’t really matter that my towel decided to stay home one day. It didn’t matter because Rhonda, my favourite lifeguard, rose eloquently to the occasion the moment she saw me slinking out onto the pool deck with the despairing face of one who is calculating the amount of time that will be needed to dry an entire body under the change-room hand dryer. Boldly rejecting my offer of cash, she vehemently presented my case to the guy in charge of the towels. I heard her say, ”That lady comes really often and she always brings her own towel.”.
And it didn’t really matter about the other thing—the unmentionable thing either, because when all is said and done, I don’t think anybody ought to go through an entire career without ever experiencing the heightened adventure of spending a full day in the role of professional woman freed from the tyranny of underwear.
Indeed, given the evidence presented so far, it does seem that in the matter of going for a morning dip on the way to work there is nothing to worry about at all.

free?

One day I was digging in my purse. I wanted to make a phone call. So down I plunged, past the cheque book, past the nail clipper that has no file because airport security snapped it off just after 9/11, past my thyroid pills and pain killers, past the comb I use for comb concerts and occasionally for my hair, past cough drops and gum and pens and a Braille writing slate, all the way down to the deep dark bottom where the heavy stuff sinks. When I finally drew out my cell phone a teenager sitting beside me peered at it and said, “What’s that?” That’s how old my cell phone is.
Yes, my cell phone is old, old but I still love it. Sometimes you get something that’s so good, so unbelievably good that you think maybe you ought not to mention it to anybody, in case you got it by mistake. This, for some time now, has been the case with my cell phone. And though it has never let me down, has always worked well enough, it’s not the phone that I value so much as the plan, a plan I got back in the olden days when $11.00 could buy you something nice. It’s a pay-and-talk plan. For less than $11.00 a month, or maybe it’s just a wee bit more, the company takes the money out of my account and gives me voice messaging and 25 minutes worth of air time, way more than I need. Nobody calls me to offer me more features, nobody pesters me at all. Every so often I go away from home and clear out some of the extra money that accumulates on the plan by making a long distance call.
And so, given how unbelievably good that cell phone has been, you can probably understand how distressed I was when, after several tries, it finally dawned on me that my phone would no longer make calls when I was away from home. And I simply had to face the truth, the party was over. It’s a cutthroat world, and so I knew that they had finally caught up to me and taken away a privilege. If a thing seems too good to be true, then it probably is.
I called up the phone company to explain the problem. I practiced the call for several days before I actually made it. Experience has taught me that customer service lines can make me angry very quickly, and I don’t like to hear myself screaming over the phone. The call started just as I had imagined it would, with a tour of many options, a recording, a musical interlude, assurances that my call was important. Suspicion was rising. So was my temperature. Finally I was connected to someone whose English I could barely understand. So things were just as I had expected them to be. Even hope ladies don’t seem to be able to change this!
Still, it seemed that I had to make this call. I explained the problem. He repeated my explanation. I tried to be patient. In turn the agent, once I got used to him, was patient and competent. He asked me to take the battery out of my phone. I did so. He asked me to put it back in. I tried. He was patient while I tried. He was patient while I tried again and again. He was patient while I searched for David and got him to try. He was patient while David tried again.
Then he said, “Excuse me, but we need not continue this. Your phone is very old. I can send you a new phone free of charge.”
And here it was, exactly what I expected. I wasn’t born yesterday. There is no such thing as a free phone.
“What kind of a contract will I be entering?” I asked.
“None,” he said.
“How will my monthly bill change?” I asked through gritted teeth.
“It will be exactly as it has been?”
“How much will the shipping cost?” By now I was desperate to find the loophole.
“We will ship it free,” he said. And then, “What colour do you want, black or red?”
“Which one costs more?” I knew I had him this time.
“They are both free,” he said.
So I ordered black, and then I got an email confirming the order and showing no charges.
And I still believe there is no free lunch, but I think there might possibly be a free phone—for hope ladies, and maybe for other people too. Come Christmas I will be reconsidering my theories about Santa Claus. Way to go Telus!

WHAT COLOUR IS MICHAEL JACKSON?

Last week I learned something I had not previously known. I learned that Michael Jackson was black. The news surprised me more than a little. Having never once wondered about his skin colour, I found myself thinking over and over again about the huge changes that took place in the last half of the twentieth century.
I can’t say I was ever an avid Jackson fan, and a blind person is definitely not the most likely person to observe skin tone, but still I am surprised because my state of not-knowing has been going on for a very long time. I didn’t know it back in the days when his sweet voice sang the song about Ben. I didn’t know it when Thriller made it big. I hadn’t discovered it at the turn of the century. In fact, I might never have found it out had his death not surprised the media so much that they stopped all conversation about anything else for several days, thus rendering themselves desperate to say something—anything about Michael Jackson. It was during that never-ending, mind-numbing deluge of over-information that the word got out.
If there’s a medium that ought to be colour-blind, you’d think it would be radio. In this day and age it would not be unusual for an up-and-coming singer to be black without my knowing it, but that was certainly not the case when I was young. Skin colour was everything back in the days of early rock and roll, back in the days when Elvivs was making it big. In those days there was black radio and white radio. A white singer could take a song from black radio, a song never heard by whites, and turn that song into a hit.
Without being aware of it, I listened to white radio. It wasn’t a conscious choice. White radio was all we had here in Canada. When I was a teen-ager my transistor radio pumped out an endless drone of news about the riots that plagued cities and universities across the United States. I listened at first in wonder, then turned off the radio to save the batteries for the music. Unruly crowds of bottle-throwing building-burning mobs were of no interest to me. There was, I supposed, a certain level of inequity. But I did not fully understand that black people were not allowed to vote, or assume positions of leadership, or take certain jobs in hotels, or use washrooms that I would use. Even if I had understood, I would likely have said that all this trouble wasn’t likely to fix anything.
I liked to think that I was a civilized teen-ager, civilized and practical. If I had had dreams about how things could be, a vision of a better future, I might have wished that, by the time the early seventies rolled around, a famous singer could be black without my knowing it. I might have wished that it could take 38 years for me to hear the news. Then again, if I had fully understood how things really were, how much things would have to change in a very short time, I probably would have thought these wishes could never come true.
So I really am delighted to learn that Michael Jackson was black—even more delighted that I didn’t know it. There was no reason why I should have known it. Things had changed so much, yet so subtly that Michael Jackson was presented on my radio—my white radio. It’s a story I will try to remember when I want to hope things can change.

BIRTHDAY CAKE

There are generally more options available to us than we initially imagine. I try to remember this, though all too often I forget. So I was particularly thrilled to receive this piece of indisputable evidence by email from Cousin Trudy just the other day. She wrote: “”I went to get Andy a birthday cake on Sunday morning (lame duck me never bakes them anymore) at the Co-op because I like their frosting the best. They didn't have any regular slab cakes left, only fancy little designer cakes but I asked them if they had any slab cakes hiding in the back. The guy said no and I had tragedy written all over my face - so there's a little conference behind the counter and another fellow says "well...we have this one...that didn't
get picked up yesterday..." and pulls out this crazy cake that looks like three stacked presents with a tiny plastic picture frame present on top and says
I can have it for $xx.xx instead of the $59.99 that it normally costs. So I bought it.””
Now you might think the family would object, but this was not the case. “”Trevor thought it was absolutely hilarious that I would buy someone
else's cake and that we should do that all the time.””
And what was the nature of this cake—a cake so inconsiderately abandoned? “”The top layer was green and the next was yellow (all layers are half white and half chocolate on the inside) and the bottom layer is blue. It turns your teeth blue so there's no pretending you didn't just sneak another piece of cake.””
How often do we pine for options? Out there in the world on this very day there are wives and mothers, fathers and maybe even brothers who are wondering how to show their love with the perfect birthday cake. Standing in front of bakery counters they look at the slab cakes, believe they’ve seen everything available and settle for something ordinary. More’s the pity. Just think of what wonders might be available—even deeply discounted in the back!

SPEAKING OF PARKING AND FLOSSING

I was booked a long time ago to give the keynote address at the annual conference of dental hygienists. I wanted to say no, but the request was made with such genuine interest in hope, such confidence in my ability to make it meaningful, that I heard myself agreeing to do it. Deep down inside me I felt the threat, a tiny trickle of fear with the power to wash away the entire dike of my confidence. It was the fear born of an infrequent flosser.
Let me say in our defense, for I know I am not alone in this, that we infrequent flossers are not all cut from the same cloth. Some of us don’t choose the floss-deficient life. The life chooses us. It positions our teeth close together, packs them in tighter than bus riders in rush hour. Try to slide a dental string between bus riders in rush hour! You’ll see just how difficult it is. The string will stick. Then it will fray. Then it will snap downwards causing pain and maybe even bloodshed.
Some days I decide that being an infrequent flosser is a choice I am not prepared to make. On such mornings I take a deep breath, pull out a length of waxy floss, cut it on the little cutter and start the painful procedure. Five minutes later I am off to work with gums oozing and fuzzy floss shards huddling amongst my molars.
”Do you floss?” asks the hygienist when I go for the regular cleaning. (I’d be happy to skip the cleaning, but the dentist never offers this possibility.)
“Sometimes,” I reply with a clear conscience. She has to believe me. I am certain she’ll find the shards among the bacteria to prove it. They take a long time to decompose.
With my history weighing a heavy burden on my heart, I prepared for the dental hygienists conference. Pre-conference intelligence had already informed me that 267 of them would be crammed into a ball room awaiting my proclamations on hope. I was, understandably, afraid to open my mouth. But then I received an unexpected gift.
The gift was delivered in the parking lot outside a grocery store where we stopped for milk on our way home from the blood donor party. It is a small store with a small parking lot. Some of the spaces are reserved. One is reserved for people who like broccoli. That one was full. One is reserved for people who eat all their vegetables. That too was full. One is reserved for people with a sweet tooth. Several cars were jammed into that one. But there was one empty space, reserved for people who floss daily.
Under other circumstances the results might have been disastrous. But on this night I was particularly lucky. Not only was I with David, a daily flosser generous enough to let me share the parking space, but I also had been given the opening paragraph for my speech.