A COMPICATED SUMMER

Summer is over. That is my final answer. Surely on September 30 the truth of it is indisputable. Never mind that the flowers of Edmonton are still out in full bloom, and the sun can take off your sweater in a matter of seconds, so fresh is the memory of warm pavement. Never mind that the wasps still buzz when we take our supper out to the veranda. Never mind that my sandals remain at the front of the shoe rack. Never mind that my birthday, only 9 days ago, was celebrated as a garden party with all the house doors agape and the guests lingering for hours on the lawn. Summer’s over, I say stubbornly. Ignore all evidence to the contrary. “How was your summer,” my friend asks me. “Complicated,” I answer truthfully, beginning, conservatively I hope, to describe all the things that prevented me from answering her question with the more customary “It was a great summer.” The list is a longish list of complications and when its highlights have been explored, it is time to move on to another topic. Those things that might have provided evidence of a good summer—even a great summer—remain undescribed. “What were ten of your favourite things about our summer?” I ask David later in the day. “Ten?” he says doubtfully—suspecting that he might be contributing to the next instalment of THE HOPE LADY Blog. “Make it five,” I blurt. No point in giving him a task too large to handle. It was, after all, a complicated summer. And I was, after all, fishing for some way of thinking that the summer might have been good. “Our trip to Meadow Lake,” he begins. I am surprised, for I have forgotten the trip to Meadow Lake. How could I have forgotten it? Late June was only three months gone. I am vaguely disappointed in myself for cutting the list from ten to five. I’ve made it too easy. Why, now that I have remembered it, I can easily name five good things about Meadow Lake. He could too, if he thought about it. He could list the perfect sand without a pebble to hurt our feet, the cool lake water, the prompt response to our call for a boost when we drained the car battery, the family of spruce grouse that delayed our trip to the beach, the ice cream stand, our shade-dappled games of Progression Rummy, the rainy day that snuggled us into the trailer for an afternoon’s reading and then turned to sunshine so we could cook our outdoor dinner. He could name these and the list would be done, but he does not do this. Instead, he rushes on. “Our week with the Haleys in Ontario,” he says, “all the people we saw in Ottawa, and the light show on Parliament Hill, and all the Sundays we spent at Mark and Tracey’s new home, and the games of dice we played on the veranda. Is that five? What would you list?” What would I list? What were my favourite things about the summer? I would list all of these. Then I would add some others—the good fortune of finding fabulous people to rent our suite, the generosity of the work crew who whipped it into shape for renting, three happy weeks of hands-on Grannying, the sense of family and the companionship of having my sister live with us throughout the summer. There were parties and picnics with my nieces and nephews, chances to hold their babies. There was the group of seniors with macular degeneration that I loved to facilitate, the people who shook off their depression and gave credit to me, the letter from the university asking me to supervise students again, my new volunteer counselling job at Walk In Counselling. There were the warm evenings on restaurant patios in Milwaukee, our introduction to the St. Lawrence Seaway, the cruise among the Thousand Islands, the sweet corn from farmers’ markets. My tongue tingled with the memory of raspberries from the patch. There were the afternoons when Lawrence mowed the lawn and trimmed the hedge. I loved the concert with The Once at the T.A.L.E.S Festival. There were stories to tell. David had been telling some of them. I loved the story about the bird who hit our window, then fell onto the veranda. It lay there for half an hour, a corpse awaiting disposal. And then, when David touched it with a shovel, it roused itself and flew off. “It’s a good thing,” he said, “that I didn’t try to put it into a trash bag before picking it up.” It might not have been able to fight back. Judging its condition too early would have been a fatal error. And I say, with that story in mind, that the summer is over, though we are, so far, having a lovely autumn. It’s a good thing I held on to the summer long enough to be able to sort through the complications and report, with evidence presented, that it was a great summer. For how could it have been otherwise, given all that happened in the space of three short months?

THE VIDEO SHOOT

FIREFLY DIGITAL “Since just after the time of the dinosaurs the folks at Firefly started producing videos. Over 400 videos in the last 10 years. The exciting thing is we’re just getting started and although the technology is changing at a rapid and exciting pace the core of our work remains the same – it’s all about story telling.” What a pleasure it can be when you come, unexpectedly, into contact with somebody who does a job exceptionally well! It can happen almost anywhere—in a bank, in a tangle of leaking basement pipes, over a wasps’ nest under a veranda, in a counsellor’s office, or in a classroom. It can even happen on a video shoot—as I discovered last week, when I worked on a video with Tracy Bennett from Firefly. I confess, my expectations were low. I have been involved with a few video shoots in the past. Some of them were worse than others. In general, I’d label them in the category of inconvenient and unsatisfying, though the resulting productions haven’t been as bad as the memory of the production. So I would not say I was looking forward to participating in an e-learning video on hope and self-care for the care-partner support programs of the Alzheimer Society. But I have been working with the Alzheimer society for many years, so I agreed to do a video, and I labelled the dreaded experience in the category of “taking one for the team.” My less-than-perfect experience with video shoots has been only partially the fault of the video-shooting process. To be fair, the topic of hope is a difficult topic to grasp and squeeze into a few cogent sound-bytes. Ask me a simple question about hope, and you’ll get a rambling answer. I am, it seems, a storyteller. In the short video format I try to focus on content. Somehow, my content rarely blossoms without the story, and the story that ends up taking first place in the video is unquestionably a story I told, but not the story I had wanted to tell. The preliminary work on the Alzheimer shoot was handled long distance. Like all the video producers who have gone before her, Tracey Bennett had no idea what a HOPE LADY was, or why she was interviewing THE HOPE LADY for an e-learning video on Alzheimer care. She called me from Halifax to find out what it is that I say to groups of family care partners, year after year after year. I admit that I couldn’t seem to tell her over the phone. “We have conversations, I said. “Spouses and adult children of people with Alzheimer disease feel more hopeful at the end than they did at the beginning. That’s my skill, constructing conversations that give people hope.” Even as I said these things, true as they are, I could feel the cloud of vaguery descending. What story was I trying to tell? It was the same old story, beginning again. In fact, I was under-stating the conversational case. The conversations I have with care partners at the Alzheimer Society are not entirely unscripted. When I sit down for a conversation with a dozen care partners, I follow a brief handout and fill in the interesting parts with my stories and theirs. Grasping with Tracy for some sort of clarity, I offer to send her a handout I use for Alzheimer discussions. In return, she sent me a draft video script. This was the point at which I began to feel that we might be on a better track. The interview guide that accompanied the script stated some learning objectives that looked suspiciously like my goals for sessions with the care partners: 1. Understand the importance of hope on the journey as a care partner. 2. Identify ways to maintain hope in the face of this progressive illness. 3. Understand the importance of caring for one’s self as a family care partner. 4. Describe when and how to ask for help. The script had only a few questions for an interviewer to ask. My answers were roughed in. I was encouraged to add to the answers, but not to change the questions. Using that script, I prepared in advance to shoot my portion of the video. Some day a video featuring me in conversation with an actress named Liana will appear on the Internet. It was made in the manner of a movie with actors, but it will appear to be the filming of an interview. To the viewer, it will appear that Liana is brimming with curiosity about hope, the experience of Alzheimer care partners, and the ever present need to maintain good mental health when you care for people who have dementia. It will appear that she has asked just the right questions at the right moments to get the story out. Average viewers will not suspect that the questions came, not from Liana, but from Tracy. There will be no reason to believe that half of the questions were asked later, then inserted into my original answers, after Tracey had heard the content of my answers to the few scripted questions that were asked of me in the first round. Nobody will guess that some of the smiling and nodding was recorded later, then added in and thoughtful pauses. They won’t know that each of the questions was filmed twice, from different angles, while the answers were only filmed once. They will think they are seeing a single interview, start to finish. That is what I would think, if I hadn’t been there to witness the process. The entire process of shooting took about 45 minutes. From this, they intend to develop a 15-minute interview. Tracy was the person who so capably managed the process. I was blown away by her intuition for adding the questions in after the answers were given. She did this on the fly, in the space of a few moments. But while she managed the process of filming the original script, she was also managing the content. She added a whole new section based on her own curiosity about something we hadn’t discussed. She and I had a conversation off camera, then she scripted questions for Liana to ask. Seldom have I had the privilege of watching someone with such a gift for hearing a story and making a story at the same time. The final product will be the joining of a hundred tiny pieces, trimmed to fit like panels on a patchwork quilt. I asked Tracy if she would be the person doing the final edit. She said she doubted it. She would be going on to do something else. She said it was very hard for her to let a project go, to trust the final edit to a person who had not been in the room at the time of filming. But she knew, from experience that the video would turn out well because the foundation was there. I didn’t doubt it. How could I?

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.

SONG FOR DAVID

YOU’RE MY BEST FRIEND My favourite song by The Once from Newfoundland. Enough said. It speaks for itself.

"I WILL" IS STRONGER THAN "WHAT IF"

WHAT IF Eloquently said by Pastor Bob on the Northpointe Community Church blog: “Nearly everything and everyone is temporary, impermanent, and unpredictable. We drive ourselves crazy asking “What if?” What if she gets sick? What if he moves? What if the company gets sold? What if they change their minds? What if she lied? What if he dies? What if there’s a war? What if the stock market tanks again? What if I don’t ever get a good paying job again? What if? What if? What if? Against the threat of “what if,” our only power is to say and mean, “I will.” In the face of what we cannot know or control, we resolve to do what we can: we pledge to be present and to care. We give our word that, as far as it depends on us, we will be there for each other and for the life and work we have in common. “I will” is stronger than “What if?”” Ruth sent along that little Gem, knowing we were overwhelmed. I read it and thanked her. Then I heard myself quoting it at work--to an 87-year-old woman at the CNIB--and in my volunteer life—to a 30-year-old man at Walk In Counselling Services of Edmonton. Mostly, though, like so many other quotes that catch, I was telling it to myself. I am a huge fan of saying “I will”. That simple phrase, uttered as a guiding intention, has settled me to action many times. But just as there is power in saying and meaning “I will”, so also is there comfort in hearing a meant “I will.” Here are just a few of the meant “I wills” we have heard lately. I will share my home with a homeless family if no other home can be found. I will help you clean your garage. I will trim your hedge and mow your lawn. I will come to your birthday party. I will look after your dog any time you go away. I will bring your grandson and stay with you for nearly a week. I will stand here with you and let you know when the traffic light changes to “WALK”. I will share my pastries with you. I will put aside several hours to help your friend with paperwork and meet at a convenient location. I will stand on that tall ladder to screw in that light globe. I will work on optimism for good weather to make your party more fun next Saturday. I will play music with you. I will mention in my monthly report how much I appreciate having you here. I will water your plants. I will give you a ride. I will send you my favourite gluten free recipes. I will purchase fruit trays and carry tables. I will be glad to see you. Pastor Bob is right. “I will” is stronger than “What if”.

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.