The Dance

Author's note: This is a true story, although I have written it from the perspective of my husband and therefore I have taken some creative license.

The Dance

I am not a great dancer. That doesn’t mean I don’t like to dance, though. What it does mean is that my wife grimaces slightly when I ask her to dance, and sometimes lies and says she doesn’t like the song. She thinks I don’t know this, and I am gentleman enough not to accuse her outright of not wanting to dance with me. Nevertheless, there are times when she has to give in because etiquette demands it. Like weddings, for example. Our wedding in particular.

We were married in 1994. That sounds like a long time ago now, and I guess it is…twenty-two years, almost twenty-three. Lots of things have changed in that time, not even counting how we look in the mirror. The internet, for example. The rise of personal electronics. And music, although I find it hard to notice the small nuances. I know what I like, and what I don’t. First thing is that I have to hear the words. These days, I turn on the radio in the car, and I can’t even tell what language they are singing in, the words are so fast, or slurred, or overwhelmed by the music itself.

I guess that’s why I kind of like country music. It’s slow, and I can hear the words. When we were dating, we went to my wife’s friend’s wedding. It was an all-out country affair. My wife was a bridesmaid, and wore a blue western-styled dress with cowboy boots. To prepare, we took two-step lessons at a country-and-western themed bar a couple of nights a week for a few months.

I wasn’t great, but I did get better. The instructor kept saying to move to the beat, but what the hell did he mean by that? What exactly is “the beat”? My wife rolls her eyes and strikes the table rhythmically, apparently “in time” with the music. “Can you hear that?” Ummm, not really. I take a sip of beer, one of the great advantages of learning to dance at a bar. Nevertheless, I keep going, and over time I think I get what they are talking about. Not only can I do the basic two-step, I can even twirl her and do a couple of other pretty awesome moves.

Anyway, because of this, my wife went through what she now calls her “unfortunate” country music phase. This means that the song at our wedding, not too long afterwards, was a country tune. I liked it. I still like it. It was the country-music wedding song of the year, John Michael Montgomery’s “I Swear”. I can hear the words without any difficulty, and I can remember them:

I see the questions in your eyes, I know what’s weighing on your mind. But you can be sure I know my part. Cause I’ll stand beside you through the years, you’ll only cry those happy tears. And though I’ll make mistakes I’ll never break your heart. I swear. By the moon and the stars in the sky, I’ll be there. I swear. Like the shadow that’s by your side I’ll be there. For better for worse, till death do us part I’ll love you with every beat of my heart, I swear.

We had a small wedding, just family and a few friends. Oh, and two wedding crashers, two grad students who showed up for the reception. We thought it was funny. And when it came time to dance, I showed them I could two-step with the best of them. I took my wife in my arms, and despite her enormous white dress, was able to twirl her in time to the music. I swear….

Fast-forward twenty-one years. We’ve done pretty well, meaning we are still married. We are having some tough times though. My wife was diagnosed with leukemia in the fall, and it was touch-and-go whether she would make it. She ended up on life support, and when she was taken off (thank goodness) she had what the doctors called critical illness weakness. It meant none of her muscles would work. She could move her neck, a little. They seemed to think she would get stronger over time, and even walk again, but right now she was like a huge baby.

The next two months were agonizing. For her, certainly, but also for me. I was at the hospital constantly, acting as her personal nurse/physio/chief comforter. It was a huge relief when she began to be able to move a bit. Small things, like holding a glass, were a major victory. So was the day she could finally hold her own toothbrush and brush her own teeth. Brushing someone else’s teeth is harder than you might think. Getting her to stand and walk again was exhausting, physically for her, mentally for me. But finally, after four months in hospital, she was given a day pass to go home.

I knew exactly what I wanted to do when she got there.  I hadn’t foreseen that she would have trouble getting up the stairs.  After all, she’d been practicing at the hospital. But there she hadn’t been weighed down with boots and an overcoat. We took them off, but even then it was almost impossible. Four steps! Four tiny little steps that I never, ever once thought about as an obstacle. When we finally got her up the stairs, she was crying with exhaustion. I was crying a bit, too.

We got her into the living room and onto a couch. She might be bald, weak, and almost unable to sit up on her own, but she was my wife, and she was home at last. I had spent some time that afternoon looking for something, and had eventually found it in a box downstairs. I took that dusty old CD and put it into our old player.

The music started to play. I could see the disbelief in her eyes.  I see the question in your eyes, I see what’s weighing on your mind… I help her struggle to her feet, and I hold her as the music plays. She is so hunched from months in hospital that her head is only in the middle of my chest, even though I am not a tall man. We sway a little in time to the music. I swear, by the moon and the stars in the sky, I’ll be there… This is not the most elegant of dances, but it is beautiful and, for me, incredibly romantic. My wife is crying, weeping into my chest with emotion. I am crying too, as we dance to our song. I meant it then, and I mean it now.

I swear.

My Journey, Part 2

Author's Note: This is a true story, as I remember it. If you choose to read it, I would like to hear your comments.

My Journey, Part 2

I am home, awaiting my bone marrow transplant. It has been scheduled for late April. Every day, I try to walk around the house as much as I can, but it isn’t much. I can barely make it from the couch to the bathroom, and back, and if the house cleaner is using the vacuum, I can almost not step over the cord. I shuffle, and clutch walls for support. I am extremely weak. It is a struggle to stand up, not just because of weakness but because it hurts. Everywhere. I am hunched over, as the muscles in my back and tummy are too weak to hold me upright. Charles is my backbone, sometimes literally, holding me up when I am too weak to stand.

When I had woken up in ICU, I at first didn’t realize that my body was the thing attached to my neck. It was yellow, the colour of oak cabinets, and had a row of staples holding together a long incision from just below my breastbone to my pelvis. It looked like a wooden doll. I had woken up as Pinocchio. I learned that the yellow was jaundice, as my liver had been severely challenged, but that its function was improving. Slowly, over the next few months, I would become less yellow each day.

Although the scar has healed, and the staples had been removed, I am still curved. I guess if you get cut open then spend several months in bed, unable to move, you heal curved, like a cooked lobster. I joke that I am now a 90-year-old man. I am still pretty much bald, although some straight, black hair was starting to grow in, and I use a walker. I can’t bear to look in a mirror. I haven’t for months, ever since the nurse in the ward, once I was released from ICU, walked in and said, “What have they been doing to you? You look like they have been beating you up”. I guess I had two really black eyes, and my eyes still leaked a bit of blood from all the extra fluid. I was worried that I would frighten my nieces and nephews when they visited. My husband gives me diamond earrings for Christmas, but I won’t put them in because I would have to look in the mirror. I also don’t have the strength or the motor skills to actually get them in my ears. People, kind people, friends and colleagues from work, want to visit, but I won’t let them. Eventually the bruises fade. I let one of my friends, Susan, come to the hospital. I am so glad to see her!

But now I was home, and need to get stronger for the transplant. The doctor who would be in charge of my care told me it would be chemo like I had never had chemo before – and that nearly killed me -- and I was worried that I wouldn’t be strong enough. When you get a bone marrow transplant, they have to give you chemo to destroy all your original immune system, and then irradiate you to make sure it is all gone before the transplant. I call, and ask for another two weeks to get as strong as possible. The doctor agrees, and my anonymous donor also agrees. The only thing I know about the donor is that they will be young, between 17 and 35 years old, probably male, and that the donated blood will be arriving by plane. The relationship is kept anonymous for two years. After that, you can request to know who it is and, if they agree, you can then communicate with them. I am so thankful that a complete stranger would do this for me.

I am also really thin. Although I was extremely hungry in the ICU, that ended. The smell of most food in the hospital made me vomit, and my mouth is so dry it is hard to chew. I could tolerate some liquids, and my family brought me mango smoothies with protein powder to drink. They had to start feeding me intravenously so I stop losing weight and get enough protein. The doctor tells me that if I don’t build up enough protein, the next infection could kill me. Charles has to begin by hand-feeding me as I can't cut my own food. He coaxes me to eat just one more mouthful each night until sometimes I want to scream, "I can't!". The dietician wants me to eat more mashed potatoes, but each night the watery puddle of reconstituted potatoes is sent back, uneaten.

Once I can hold a pen again, they make me write down everything I can eat by mouth. It starts off small: Two cashews, a bite of dried apricot. Half of a vanilla-flavoured Ensure. Half a mango smoothie. Two tablespoons of yogurt. Eventually, I am able to start taking enough food by mouth that they can take me off the intravenous food. Now I am home, the food is more appetizing, but it is still hard to eat enough to gain weight. The dietician tells me not to worry about balanced meals, just to eat anything that will stay down, even if it means eating nothing but ice cream. The trouble is that everything tastes funny. Water can taste oily. Sugar burns my mouth. Meat has a texture I find repellent. Alcohol – well, if sugar burns, just think what even the smallest bit of alcohol feels like. I do my best, and I do end up gaining a bit of weight.

Eventually, the date arrives where I need to get my transplant. On May 2 we go to the cancer centre and I am checked in. The chemo will take place over the next eight days. On day eight, I will get radiation and then the transplant the next morning. For the first couple of days, I am actually allowed to get the chemo and then go home for the night. I have to monitor my temperature. A fever of 38 means call the hospital. A fever of 38.5 means call, and then get to the ward as fast as you can. The first night I am home, I run a fever of 38.5. It is 3:00 in the morning. We bundle me into boots and a coat and drive to the hospital, where I am re-admitted. The fever subsides, but with no immune system, it could have been dangerous.

The chemo goes smoothly. By this, I mean I don’t go into toxic shock. Chemo is never “good”. I am constantly nauseated, and my mouth goes dry. It becomes hard to eat once again, and even harder to keep walking. A physiotherapist comes most days to walk me around the ward. Some days, I can only make it once. Other days, good days, I can go around three times, a total of about 400 meters. When the physio doesn't come, Charles is my de facto physio. When I first got into a ward from the ICU, he would help me do exercises -- without him, I probably wouldn't have walked for several more weeks. I couldn't even bend my knees, and he would put me through an (excruciating) exercise to help me activate those muscles again. Unlike the hospital I was in before, this ward does not allow family to bring food from home and put it in a communal fridge. They can bring food, but only nurses can access it to reduce contamination. I also cannot get smoothies or any “outside” food, again to reduce the chance of bacteria. A great practice, but I miss my mango smoothies. The hospital kitchen makes small containers of fresh-cut watermelon available, and I can eat this. For the next few weeks, I live on watermelon, mushroom soup, and the occasional fresh smoothie my sister makes for me.

The strange black hair that had begun to grow in starts to fall out. I take a shower, and when I towel my head off, much of it falls out. I look like an old monkey, with mange. My husband tells me it will be OK, but I call the nurse right then to have the rest shaved off.

It is time for the radiation. I am scared. They put me onto a stretcher and wheel me down to the radiation unit in the basement. There is a clear plexiglass-framed “bed” that I am put into. Around me, they pack clear bags filled with glass beads, some kind of soft filler that looks like Vaseline, and other things. The bags are meant to diffuse the radiation evenly. When they are finished packing, I can’t move. I am glad that I am only mildly claustrophobic. The only part of me that isn’t packed is my head, which is shielded by special inserts in the plexiglass. I am wheeled into a room where the radiation gun is adjusted and pointed at me. I can feel my heart rate go up. The technologists leave the room, monitoring my progress from a small adjoining room. Charles is there too. I learn later that he is scared, too. An ABBA soundtrack starts to play. I will always associate “Dancing Queen” and “Mama Mia” with full-body irradiation. After seven and one half minutes, they come in and turn me around, to make sure I am evenly radiated. The procedure is repeated in the afternoon.

The radiation doesn’t have immediate obvious effects, but within two days everything is raw. My throat is bloody. They give me what they call a “Pink Lady” – a “cocktail” of numbing medicine you are supposed to drink to make it possible to swallow. It is incredibly painful to do that – swallow – and they rig up a suction tube that I use to suction out my bloody saliva instead of swallow. I am also hooked up to a machine that allows me to hit a button every six minutes to get pain drugs intravenously. However, the pain drugs make me feel worse – really incredibly nauseated and dizzy. I prefer the pain. The doctor comes in and gives me a lecture on how he wants me pushing the pain button every six minutes, but I just can’t. I push it a few times over the weekend, but that’s it.

The transplant itself is like getting a blood transfusion. It arrives in a special cold box, from the airport, and is hooked up to my IV. It looks like a regular bag of blood, but the donor has been given something to drink before donating that will heighten its stem cell content. I am told that a “good” donation has a certain number of stem cells. My donor is exceptional – the levels are several times an acceptable rate. The doctor is very happy. I feel very encouraged.

Eventually, I start to heal. I can’t be released from hospital until my white blood cell counts hit a certain level, to ensure I have at least a rudimentary immune system. Every day, the test my blood and monitor the counts. I am what they call “immunologically naïve”…which means I am like a newborn baby. I have no defenses. Once recovered, I will have to get all of my childhood vaccines again. Measles, chickenpox, mumps.  Everything.

Eventually my counts hit a level that I can get released from hospital and go home. I still go to the hospital every day, where they give me fluid and meds, but I sleep at home. Eventually, the visits get reduced to three times a week, then once a week. I am on immuno-suppressants to help the transplant “take”. There is something called host-versus-graft disease, that people can get to varying levels, when your body tries to reject the transplant. I am lucky. I don’t experience this.

My sisters decide it’s time to get me a wig. I am not sure. I am still fragile, both physically and mentally, and still avoid mirrors even though they tell me I look very regal bald. But they have been so kind, so good to me, and so obviously wanting to do something nice for me, that I agree. It is June, and it is hot out. I have a hard time regulating temperature, probably because I am so thin, so I am either broiling or freezing. The wig place is cool, but I am OK. They take me to a private room to try them on so I have some privacy. If I have learned one thing from all this, it is how kind strangers are, but seeing me also tends to make some of them weep. I am so obviously broken.

I pick a short, dark-blond wig, and I wear it out of the shop. I can see that, with it on, I look more “normal”, although still ill. It is ferociously hot though. I picked a wig that was part synthetic and part real human hair. Wigs made from human hair are much cooler, but also very expensive. My “hybrid” was still many hundreds of dollars. I am reminded of how a former colleague of mine, Joey from Dallas, grew his naturally thick and curly hair really long once so he could donate it for wigs. I am grateful to people like him now. Once I am home, though, the wig comes off as it is so hot. I do take one “selfie”, though, to share with parents, who want to see my new wig. It is the first picture I have taken of myself for a very long time.

Author’s note: I will at some point write Part 3. I find it so hard to relive some of this stuff. My stomach starts to hurt.

Coffee Mate

Author's Note: I wrote this last spring. I am just getting around to posting it now, as I am dreaming of another spring in the middle of a cold winter.

Coffee Mate

It’s an early spring, and I’m grateful for that.  When the weather is cool, I spend the two hours between when I get up and when I wake up my wife wondering what to do about the coffee. Do I make some for me, knowing that in two hours I will have to make some fresh coffee? Or do I compromise and make some green tea and wait for my wife to get up before brewing some coffee? Or do I just give her cold coffee, somewhat bitter from its time in the pot, and heat it up in the microwave? You see the decisions I face and I’ve only been up a few minutes. But now it’s spring and the coffee conundrum doesn’t bug me so much, because I can breeze right through the kitchen with nary a thought of coffee on my mind, and go right into the garden.

There is a lot to do. There’s the grass that has taken hold in the garden that needs to be dug up, the dead growth on the bushes that needs to be cut out, and the mound of bird seed that the sparrows and chickadees have been careless with all winter needs to be dug up and smoothed out. Then there’s the pond. I didn’t change the water in it last year and this year it’s as dark and as weedy as strong tea. That doesn’t stop the neighbourhood cats and squirrels from drinking it though. Even our own cats, when they are out in the yard on their long leashes, like to lap at it. Maybe the organic matter in it has brewed over the seasons into a tasty mess. It doesn’t smell very good, though, and it tends to be slimy. That’s why I hate cleaning the pond. Thank god it only has to be done once a year. Most years.

I am winning my fight with the neighbourhood hares. In the winter, according to the testimony of footprints in the snow, they romp in the front yard and dance by moonlight in the backyard. That last phrase is my wife’s. I would never have thought of bunnies dancing. They shit on my lawn, eat my plants, dead or alive, and sometimes sleep in a snow den under the bench in the backyard. Hares and I go back a long way, and never really on the best of terms. When I was in the Arctic doing research for my doctorate, I had a close encounter with a hare. It was out in the tundra, nibbling yellow Arctic poppies, and I wanted to take a picture. (There are no red arctic poppies, as far as I am aware. In fact, in my time there, I saw no red flowering plants at all). The hare had other ideas. It charged me. I took one look at that huge snarling hare and ran for my life. I expect those Arctic poppies have a fair bit of opiate-like properties. In retrospect, it was very Monty Pythonesque, but I wish now I hadn’t told anyone about it. It inspires a dignity-sapping glee I find hard to laugh at.

The hares find that the tender green shoots of my early tulip bulbs are hard to resist, but I didn’t spend hours planting all those bulbs last fall to have them fall prey to bunnies. When I started to notice that they were nibbling the greens and actually digging up bulbs to eat, I sprayed everything with something I got from the garden centre that is supposed to deter them. It’s organic and isn’t supposed to be harmful to the critters. You’d have thought it was like adding spices  -- a bunny flavour boost -- for all the good it did. I finally had to net the gardens. My wife doesn’t think I know, but I saw her Facebook post that said “Bunnies 8, Charles 0”. Well, I am winning now. “Bunnies 8, Charles 0” has become “Bunnies 8, Charles 1”, as in past tense (“ate” and “won”). The netting has worked, and I am about to be rewarded with hot pink tulip blooms and fragrant purple hyacinths.

There’s a bench in the corner of our backyard, by the mother-in-law crabapple tree. We called it that because when we moved in to our new house we had only one tree, the one the builder was obliged to plant in our front yard. Our moms each gave us money for a new tree, and we bought a crabapple. We joke that a crabapple is the perfect tree for our respective mothers-in-law to have bought us, but in reality we both like our mothers-in-law. The bench is the one the bunnies like to sleep under in the winter. In the summer, it is like being in a secret garden. The tree and some bushes screen it from general view, and the early morning sun hits it just right, but you can still hear the water cascading in the pond. I like to take my coffee – we are back to coffee -- there and relax with the paper. Right now, though, in the early spring, it is cool and a bit unpromising as a cozy nook.

Our cats think it looks promising though, and keep trying to reach it despite the fact that their leads are too short to get there. I can’t really blame them; besides the scent of marauding bunny and wandering cats, there are several clumps of catnip that grow here. In the summer, I cut off sprigs of the square-stemmed plant and throw it to them, watching them roll around in catnip-induced ecstasy. Our yard is a bit of heaven for the neighbourhood felines – besides the catnip, there are always flocks of sparrows, chickadees, and other small flying music boxes.  Leo – one of my cats – is sitting there under one of the trees now, looking hopefully at the chickadees that keep just out of reach.  The tip of his black-and-grey striped tail is just twitching.

But it’s still spring, and after being out in the garden for over an hour my hands are cold. I go in and put on the coffee. Today, it will be a compromise. The coffee won’t be stone cold when my wife gets up, but neither will it be super-fresh. That is what the microwave is for. Besides, she doesn’t drink it the right way, that is to say, black. She drinks a coffee latte and even adds sugar, so it probably doesn’t even matter that it is freshly brewed. Hell, I could probably just pour it out of a box and she wouldn’t even notice. “Good morning”. I’m a bit startled, concentrating as I am on pouring the coffee into my espresso cup. She’s not usually up so early. I turn to her, pot in hand. “Coffee?” I ask.

My Journey, Part 1

Author's note: This is a true story, as I remember it. It is the story of my battle with leukaemia. Although it is dark, it is still a story of hope. I will also post Part 2 at some point.

My Journey, Part 1

Two Octobers ago, I thought I had a cold. A bad cold. Maybe the flu? I had a fever and I coughed a lot. I took a week off work, and then another. I finally went to the doctor. It was November 5.

She sends me to another doctor, at the Sheldon Chumir Centre. I lie on the hospital bed, with my husband in the chair next to me, as the nurse takes blood. She closes the door and goes away for a long time. Then the door opens and the doctor pokes his head in. “We think you have leukemia” he said, and my world dissolved.

I’ve never been in an ambulance before. Ambulances are unexpectedly bumpy but all I can think of was that I am going to die. The paramedic assures me that leukemia can be treated. I feel numb.

I wait in a hallway, in the stretcher, with the paramedics and about twenty other patients waiting to be admitted. Then they call my name and I am admitted to the cancer ward.  To me cancer means death.

The chemotherapy starts. It is surreal to be hooked up to a bag of chemicals. They give me printed information on each drug in the cocktail. Some have warnings: “Can cause brain damage”. I grow weaker and my hair falls out. The nurse shaves off what is left. My dad shaves his own head in support. My husband comes every day, twice a day. Then I get sicker. I am nauseated. I faint in the shower, then later while brushing my teeth and I hit my head on the toilet. They tell me I “code 66’d”, which means that the intensive care team needs to get involved. I am in bed and a doctor I have never seen before is telling me that they need to operate. My colon has become so infected that I’ve gone into toxic shock. Some if it will need to be removed.

And then I dissolve into delirium and fear….

I am hot. So hot. I am on a sandhill in the Windermere Valley, where I spent my summers as a child, and I want water. The sun is shining and I can see the lake sparkling blue. If I could only get to the lake! But the sand is sticky and is holding me down. Sand arms hold me tightly and wrap me so I can barely breathe. I can hear voices. My sister is talking, but I can’t see to whom. I think it is to my sister-in-law. That’s odd, I think, because she doesn’t live near here. Two creatures, half human and half vulture, appear and strap a bird mask to my face. It crushes my nose and somehow controls my breathing, and I try to get it off but I can’t move. They have taken me from the sandhill and tied me to a post in a nearby field. “It’s for the best”, I hear my sister say.

I am under a square of fabric held down by a wood frame, like a sandbox, half buried in a field. I can hear voices and I try to tell them I am here, I am here but I am hidden, but I can’t speak. The field is peaceful and there are bees. I think to myself, “I can do this. I can get out from under this cloth, I just have to try”, but I can still see the field through the fabric. I can hear voices calling me, but they can’t see me. I go to sleep and when I wake the fabric is gone.

I am in a bed, in a forest full of snow. Two women appear, and they wash my mouth and my nose. It feels wonderfully cool. There is a sound of soft bells and for a few minutes I am reassured. Then they leave and two others appear. These are not angels of mercy but torturers. They wrap up chunks of cheese and place it in my bed, then bring rats and put them under the covers. I can see dead bats too, in the rafters. “You can’t get away from them”, sneers one of the women, and they leave. The rats start to burrow up the covers and I know that soon they will start to feed on me. I am terrified.

The bells start again, soft chimes. I begin to count them. I get to two hundred when it occurs to me that they are chiming because it is Lincoln’s birthday. The big bell in Washington must be chiming, and I must be somewhere near the border because I can hear it. How did I get from Calgary to Ontario, I wonder.

I wake up. It is night, and the soft lights of medical equipment provide a soft glow. A nurse asks if she can wipe the blood from my eyes. I nod yes, and then the world fractures again. I am in a room, and they are composting me. I am buried in dirt and they are harvesting my jewelry, raking through the soil. I am also hungry, so hungry. I am microscopic, and buried in the dirt of the Okanagan, the wine region in British Columbia. I try to grow tiny apples and grapes and harvest them from the soil so I can eat. I bring the technique back to where I am being composted so others can eat, too. People are harvesting tiny fruits all around me, but they don’t satisfy the hunger.

I know there are rescuers trying to get to me. They are waiting, with an inflatable hippo boat, to take me to a cabin in Algonquin Park where the jewel harvesters can’t find me. There are tiny cabins on the waterfront, where Lego people are cooking pancake breakfasts. They are from Calgary, and they are here to help. I can smell the bacon. I am so hungry. Someone asks if they can clean my feeding tube, and I am aware of a tube around my mouth. I try to get it off and to tell them the feeding tube is a mistake, that I have a mouth. I am not an alien, a monster. But I can’t get it off. I find myself lying on the ground outside a cabin, and there is a pair of garden shears. I try to position them to cut off the feeding tube, but I am not strong enough to cut through. “Charles is coming, he will cut them off with his strong geologist’s hands”, I think. He comes, but he can’t get it off either.

I am in Hawaii with Charles. We are seated in a restaurant, but the servers can’t see me, only him. I am frustrated because I am hungry. The blue ring on my finger is mesmerizing, the colour of the tropical ocean, and then suddenly we are on a boat. The boat is fishing for pork, which is hauled out of the bottom of a bay with a beautiful reef. It is tied to the bottom of the boat to salt it. I think “sharks!” but no sharks come. The boat sails around with this huge side of pork dangling from its hull. The water is incredibly blue.

I dream that my brother-in-law is cleaning my house, but he can’t figure out how to close the fridge doors. He instead puts a big quilted grey blanket over the open fridge so the food stays cold. Even though I am in Hawaii, I can see him. I am worried that the cats will tear it down. I go from my kitchen to the restaurant as though they are connected. No one can see me though. It’s as if I am not there. I hear a voice. “The critical thing is that she can breathe on her own once she’s off the respirator, and she is”. Well, that’s good. Good for her, I think. I wonder who they are talking about?

“There she is. She’s focusing”, says a voice. My eyes are blurry but I can see a person. I wonder where I am. My eyes close. I am so tired. My husband’s voice says, “try to focus”, and I do try, but I can’t. The world is blurry and strange. I sleep. When I wake up, I am convinced that I am in a shopping mall. My mother is trying to help me focus by walking past my room with a shopping cart. It’s a game, I think. They are trying to help me wake up and focus by having people I know walk by. There’s my mom again, I’m sure it’s her. Someone else comes into the room. I think it is my sister-in-law, but I can’t focus. Where is Charles? If I think hard enough, I can summon him and he can get me out of this nightmare.

I open my eyes. I can focus. I am in a hospital room and there is lots of equipment around me. I can see a nurse just outside. I can’t talk and don’t know why. Then my husband comes. I am hungry and I try to make him understand that I want dinner. As I can’t talk he gives me a pen and some paper, but somehow I can’t hold the pen very well and I can’t write. I am so frustrated, and so, so hungry. After what seems like hours he seems to understand. “You’re on a feeding tube”, he says. “You are getting what you need”. My stomach rumbles.

Finally I am both awake and lucid. Most of the delirium has passed, The nurse picks me up and puts me in a special chair. I can’t move anything except my neck. I am also extremely swollen. I have rips in the skin of my hands and feet where the skin has broken open from the pressure, and they slowly bleed. I can hear doctors talking, and I realize they are talking about me. They decide the feeding tube can come out. It takes a few hours for it to happen, but when it does, it is bliss. The nurse gives my sister ice chips to feed me and they are delicious, cold and wet. I crave more, and the nurse consults with the doctors. He gives my husband a popsicle to feed me. It is acid green and I can’t hold it, but my husband holds it so I can suck on it. It is an explosion in my mouth, a sensual feast of cold and tangy. Each suck is better than the last. When it is finished, I almost cry. I want another one but they tell me I can’t have one just yet.

I am transferred to a regular ward. I am not strong enough to press the nurse call button, so they rig up an emergency call button that is as soft as cotton to press. I can manage that. I can’t however lift anything, feed myself, or even brush my teeth, let alone roll over or walk. I learn that I spent almost three weeks in the ICU on a respirator and feeding tube, and that I have something called critical illness weakness. The muscles just become mush and don’t work anymore. They don’t know why it happens, but it happens to some people. I create a mantra for myself to say when I panic. I am safe, I am loved, I am getting better. Still, I worry that there will be a fire and I won’t be able to escape, especially at night.

Not that night means sleep in a hospital. There is always light, bells going off, people walking in and out of the room. I wonder if patients get post-traumatic stress disorder. One doctor comes in every morning at 6:00 am to examine me. Nurses take blood samples at 5:00 am. Do people get better in hospitals?

To get me from the bed into a chair, they use a hydraulic lift, like a baby whale being transferred to or from an aquarium. I dream of being able to walk again and sometimes wake up in tears, frustrated that I can’t move. Many dreams feature me running, although I have nightmares almost daily. The physiotherapists come almost every day. They have something called a sit-to-stand machine that helps train me to be able to stand up. Before I can even do that, they need to help me to be able to sit alone, unaided, on the edge of the bed. This takes about a week. Using the machine is incredibly hard, and I vomit most days after using it. A weighted sling is positioned under my butt, and I have to try to stand up using some of the weight as an aid. It takes two physiotherapists, one to make sure I don’t fall, and one to control the ballast to the machine. Eventually I can “stand” almost unaided, and I graduate to trying to walk. I take my first eight steps, with a walker, and it is a major victory. I am exhausted. My family applauds via text message. It seems like much further. I graduate to 64 steps later that week. It’s early February. I’ve been here three months.

Over the next month, I am wheeled to the gym almost every day in my wheelchair. The physiotherapists there try to get me to walk. The parallel bars help me once I have stood up, and the wheelchair is always just a step behind should I fall. In about a week, I can walk several lengths of the parallel bars. When I am back in my hospital room, I try to walk around the ward with the help of my walker and my husband who pushes the wheelchair behind me. Walking is crucial but so is learning to climb stairs. I have stairs at home, and I won’t be able to go home even on a day pass until I can demonstrate I can climb at least four stairs.

In the gym, once I have practiced walking with the parallel bars, they now take me to the practice stairs. The weight of a human body is more than I would have thought, even though I have lost about 35 pounds and only weigh around 100 pounds. It is almost impossible to go up and down four stairs. Eventually I manage it. I am rewarded with a day pass home.

I am bundled into the car. I just manage the transfer between wheelchair and car, which the physiotherapists have taught me how to do. Every bump in the car is agony, my body is so weak. I have no muscles to protect me. I start to cry as we reach my street. In order to get into the house, I have to get up the four stairs in the garage. My feet weigh more than they did at the hospital, since it is winter and I am now wearing boots. I can’t lift my foot high enough to make the first step because of the added weight. I have to take off both boots and coat in order to struggle up the steps. I just make it, and am crying with pain and relief when the door closes behind me.

I am so happy to be home! I haven’t seen my three cats in four months, and I cry again when they come to rub themselves against me. I am just able to make it to the couch, where I will spend much of my time over the next few months, whenever I am allowed out of hospital. The first thing I notice is how quiet it is. No bells, no voices, no throb of the hospital pump. It is a feast of silence.

About four weeks later, I am discharged from hospital to await my bone marrow transplant. An anonymous donor, a perfect match, has been found, and I will get the transplant in May. In the meantime, I have almost eight blessed weeks at home before being re-admitted to hospital. But I am alive. Hope springs eternal.

End of part one of my journey.

The Butterfly Effect

Author's Note: This is really my sister-in-law's story, even though I wrote it. It is a work in progress.

The Butterfly Effect

They say that the flap of a butterflies’ wing can change the weather. Something so small, so quick, and so fragile that the very act of motion sends the exquisite insect fluttering on the breeze instead of soaring like a bird, and it turns out it is amazingly powerful. It’s part of a field of study known as “chaos theory”, something I can’t claim to be fully conversant with, but my husband might. He teaches mathematics at the local high school. I may not be a brilliant mathematician, but I have come to have my own theory about the butterfly effect. My theory involves life, and death, and metamorphoses, but it begins very simply, with my childhood love of a book.

I opened the cover. The imaginary but nonetheless real scent of sea salt and myrtle leaves arose from the printed pages. I could taste the salt and recognize the oily, pungent fragrance of what I thought myrtle would smell like.  Lemon, with a hint of something much less sweet.  Harrowsmith isn’t close to the ocean, nor had I ever seen a myrtle bush. But when my ten-year-old self opened Misty of Chincoteague, I was no longer in our old limestone farmhouse on Henderson Road, but on the Virginia shore with Paul and Maureen Beebe. On Chincoteague and Assateague islands, where the wild ponies grazed proud, wild, and free on the salt flats.

The memory was strong as I looked around our bed-and-breakfast on Chincoteague Island. The 1848 Island Manor House had been kind enough to indefinitely post-pone our original reservation. We -- my husband Pat and I -- had been planning a trip to Chincoteague to celebrate my 50^th birthday. Then tragedy struck. My mom, the person who taught me to bake pies, who would brush my long hair and who was, well, my mom, was diagnosed with ALS, Lou Gehrig’s disease, and it came on fast.

The family gathered at her bedside in the hospital, their ranks swelled by friends and family who had been in the area to celebrate my niece’s wedding. My sister brought in the chrysalis of a monarch butterfly for mom to watch. She’d collected it on a walk by her cottage in Frontenac County, and brought in the milkweed essential for it to live, too. Mom had lost most of her ability to speak by then, but she would look at the jar with its chrysalis, and we hoped it would remind her of happier times when we were kids on the farm. When she was whole, surrounded by her family and friends, and dispensing her wisdom to those who came to seek her advice on everything from baking to babies. We had the house that everyone visited. When we were really young, we would pick her bouquets of dandelions or mayflowers, and she would put our weedy-but-bright offering in a swan-shaped vase on the table for everyone to admire.

My mom is the bravest woman I know. On September 1 that year, she chose to be disconnected from the ventilator that allowed her to breathe, in the full knowledge that she would not be able to breathe on her own. She chose to die. She did it surrounded by her family and, I hope, feeling the blanket of love, comfort, and longing we tried to weave for her. Through my tears, I saw that the chrysalis in the jar was gone. In its place was a magnificent monarch butterfly, gently testing its damp wings. Metamorphoses. What was death, after all, but the evolution of existence? Hello, mom, I whisper in my head. You’re beautiful.

And now, two years later, here we were on Chincoteague. We drive down from Kingston, the trip taking a couple of days. We talk about everyday things, like going back to work, but also about bigger things, like what we hope to achieve in the rest of our lives. We talk about legacy: What it means, and what we want ours to be. How we want to leave the world a better place than we found it. We are both schoolteachers, so we see how much influence teachers have on lives. But I didn’t want to rest there. My legacy, I decide, also has to do with happiness. Recognizing it when it appears, however elusive it is or how tiny it might seem. When my mom died, I’d felt as if colour had somehow been bleached from my life. I was living in a world of sepia. What made me happy? Because if I wasn’t happy, how could I expect to create a positive legacy?

We rent bikes so we can cycle to Assateague Island. As we leave, an artist is on the front step, painting one of the two graceful neo-classical columns that supported the deck overhead and provided the Manor House with welcome shade. The pattern of vines and purple flowers is lovely against the base colour of white. We set out, intent on the ponies and fulfilling a childhood dream. Misty, here I come, I think.

The ponies don’t seem to mind people. We find them everywhere, grazing by the side of the road and on the beach. In fact, some seem quite interested in us. One light-brown-and-cream stallion is as interested in Pat as Pat is in him, a kind of horse-human “bromance”. I take pictures of them together, of Pat taking pictures of the stallion. We sit on the beach to listen to the waves breaking hypnotically on the sand, and visit the lighthouse. Happiness seems close here. If I close my eyes and just be, I can feel its butterfly wings touch my face.

On the way back to our lodging, we stop at a gift shop. I want to buy something small to remind me of our trip on some cold winter morning in Ontario, when happiness seems a little further away, dancing on sunbeams in the south and not on snow crystals on my windshield when I am late for work. I pick up a calendar featuring the horses on Assateague, and I notice a wondrous thing: the stallion that had connected with Pat has a name: Legacy.

We cycle back to the Manor, thinking and talking about both our legacy and Legacy, contented with our day. As we reach the portico, I go to examine the work the artist has completed. I catch my breath. My heart beats a little faster. This morning’s work has been finished, but it’s not just a vine with purple flowers. The artist has added a butterfly. A monarch butterfly. She is here, I say in my head. Mom is here.

Next day, the artist is back to finish a few small details. I learn that her name is Diane. I tell her about my Mom, and how marvelous it was to come back to a Monarch butterfly. She listens intently. Then she tells me that when she was finished painting the flowers and vines, she thought that it needed something more. First, she thought of a hummingbird. But all of a sudden, the thought of a Monarch butterfly came fully formed into her head, and she knew for certain that was what she had to paint. “Your mom put that thought in my head”, she said. “She was here”.

I think it was Thoreau who wrote that happiness is like a butterfly. The more you chase it, the more it will evade you. But if you notice the other things around you, it will come and gently sit on your shoulder. Happiness is a way of ordering chaos. For me, it’s the butterfly effect.