Hi everyone,
Thought I'd just give you an update on my situation. I am still at the inpatient hospice facility. I perked up a lot after the first few days then I started a backwards slide. I have been having night sweats and last night I almost felt delirious. My temperature was normal at that time but it now stands at 100.2. So, I've caught something.
We have figured out a lot so far. I was on 2L of oxygen but on Sunday I had the bright idea to bring along a portable pulse oximeter (measures the oxygen levels in you blood stream on a walk outside). Bill, the kids, my brother Mark and his wife Cindy all set out for the slowest walk ever. We noticed quickly that my saturation levels fell to the low 80s very quickly. Tricky Bill increased my oxygen from 2L to 4L and, lo and behold, my oxygenation increased to the low 90s. So now we know I need 4L on exertion. I can take the walks (about .2 miles). They are exhausting, but I need to do them so my joints won't ache so much and to counteract the tightening of the skin in my legs.
It almost seems like I am going through the first few years of the disease all over again: the itchy skin, joint pain, night sweats, etc all bothered me during the early years but resolved. And, now, they are back full force.
We are still messing with the cardiac medications so that we can get me to a more normal resting heart rate. The Fentanyl PCA pump (24 hours of continuous Fentanyl with a patient bolus allowed every 15 minutes) is helping with the cough. So we are making progress. Hopefully the fever will be short lived.
Bill tells me I have had lots of typos lately. I tried to fix the last two post, but I have the excuse of being doped up at all times.
Michelle
Tuesday, September 30, 2008
Monday, September 29, 2008
Mindreaders
Originally written in 2005
A few years ago Amelia was invited to a birthday part at Fuddruckers. One of the other party guests was a boy with severe cerebral palsy. “How did you like kindergarten this year Pete?” I asked the little boy sitting in the wheelchair, body contorted from some hypoxic accident long ago. “Oh, he loved it!” gushed his doting mother, “The teachers and the kids just took wonderful care of him, and he was so happy.” I had never met Pete and his mother before this chance meeting at a 6-year old birthday party. In our brief encounter, I watched her as she instructed the waiter how to puree his food, fed Pete, and changed his diaper. Pete, wheelchair bound and unable to coordinate his movements, required the constant attention of his mother. And she lavished it upon him lovingly without the slightest hint of regret or frustration. I felt so humbled as patience is not one of my virtues.
There was something about Pete that made him seem like he was trapped inside his body. Unable to speak, he still seemed to communicate with an occasional frown or attempt at eye contact. It seemed natural to speak to him, although he was completely unable to answer me. Whenever I asked him a question, his mother responded for him. When I asked about his feelings about school or summer camp, his mother responded much like I do when asked similar questions about my own children, citing his likes and dislikes. Part of me wondered, “How does she know?” It seemed like it would be so hard to discern what was happening in Pete’s brain.
Thoughts of Pete were not quick to dissipate from my mind after we ate our cake and bid each other good-bye. I kept wondering how his mother knew what Pete needed and wanted, liked and disliked. Picking beans in of my garden the next afternoon it hit me: from infancy through adolescence, mothers read their children’s minds. Our indoctrination into this world of intuiting our children’s needs begins when we learn which cry signals hunger and which calls out for comfort and affection. Even when words appear from the mouths of our children, we possess the singular ability to understand our children’s unique language. “Ju Ju,” my first-born cried and only I knew to hold her. Like most mothers, I spent months translating for Amelia. Children’s mastery of language does not, however, carry with it a mastery of emotion. We eventually also learn to interpret behaviors, non-verbal cues, and facial expressions to predict the beginning of a meltdown or anticipate the unspoken needs of a preschooler. For my feisty younger child, I needed to become skilled at predicting when he was overstimulated, tired, or hungry lest he decompensate into one of his angry and aggressive outbursts. On some days, I knew as soon as he awoke that that it was going to be “one of those days” long before he said a word.
I stood in my garden amidst the shoulder high bean plants wondering, when does the mindreading end? I had visions of adolescent versions of my children slamming doors and sulking while their father and I stood by oblivious to the root of their angst. I pictured myself crouched by their beds, coaxing them with an innocent, “You seem upset? I’d like to hear about it.” And I hoped that when that day comes, they’d trust me enough to let me in.
Sure, I can be mind reader enough to know something is wrong, but will I be good enough to know the cause of their distress before they divulge the truth? Then, I thought about my mother. I’m 36 and she still knows when something is wrong with me. Even 400 miles of distance have not dampened her ability to detect the need for a well-timed, “What’s wrong?”
While Pete’s mother certainly has a unique mothering experience relative to those of us whose children do not face so many challenges, I realized that her experience of reading her child’s mind was really a universal one. But she will likely master it long before most.
A few years ago Amelia was invited to a birthday part at Fuddruckers. One of the other party guests was a boy with severe cerebral palsy. “How did you like kindergarten this year Pete?” I asked the little boy sitting in the wheelchair, body contorted from some hypoxic accident long ago. “Oh, he loved it!” gushed his doting mother, “The teachers and the kids just took wonderful care of him, and he was so happy.” I had never met Pete and his mother before this chance meeting at a 6-year old birthday party. In our brief encounter, I watched her as she instructed the waiter how to puree his food, fed Pete, and changed his diaper. Pete, wheelchair bound and unable to coordinate his movements, required the constant attention of his mother. And she lavished it upon him lovingly without the slightest hint of regret or frustration. I felt so humbled as patience is not one of my virtues.
There was something about Pete that made him seem like he was trapped inside his body. Unable to speak, he still seemed to communicate with an occasional frown or attempt at eye contact. It seemed natural to speak to him, although he was completely unable to answer me. Whenever I asked him a question, his mother responded for him. When I asked about his feelings about school or summer camp, his mother responded much like I do when asked similar questions about my own children, citing his likes and dislikes. Part of me wondered, “How does she know?” It seemed like it would be so hard to discern what was happening in Pete’s brain.
Thoughts of Pete were not quick to dissipate from my mind after we ate our cake and bid each other good-bye. I kept wondering how his mother knew what Pete needed and wanted, liked and disliked. Picking beans in of my garden the next afternoon it hit me: from infancy through adolescence, mothers read their children’s minds. Our indoctrination into this world of intuiting our children’s needs begins when we learn which cry signals hunger and which calls out for comfort and affection. Even when words appear from the mouths of our children, we possess the singular ability to understand our children’s unique language. “Ju Ju,” my first-born cried and only I knew to hold her. Like most mothers, I spent months translating for Amelia. Children’s mastery of language does not, however, carry with it a mastery of emotion. We eventually also learn to interpret behaviors, non-verbal cues, and facial expressions to predict the beginning of a meltdown or anticipate the unspoken needs of a preschooler. For my feisty younger child, I needed to become skilled at predicting when he was overstimulated, tired, or hungry lest he decompensate into one of his angry and aggressive outbursts. On some days, I knew as soon as he awoke that that it was going to be “one of those days” long before he said a word.
I stood in my garden amidst the shoulder high bean plants wondering, when does the mindreading end? I had visions of adolescent versions of my children slamming doors and sulking while their father and I stood by oblivious to the root of their angst. I pictured myself crouched by their beds, coaxing them with an innocent, “You seem upset? I’d like to hear about it.” And I hoped that when that day comes, they’d trust me enough to let me in.
Sure, I can be mind reader enough to know something is wrong, but will I be good enough to know the cause of their distress before they divulge the truth? Then, I thought about my mother. I’m 36 and she still knows when something is wrong with me. Even 400 miles of distance have not dampened her ability to detect the need for a well-timed, “What’s wrong?”
While Pete’s mother certainly has a unique mothering experience relative to those of us whose children do not face so many challenges, I realized that her experience of reading her child’s mind was really a universal one. But she will likely master it long before most.
Sunday, September 28, 2008
Carbon Footprint
Bill’s dad loves the dump. Every time Bill’s parents visit, Bill’s dad is anxious to make a pilgrimage to the Orange County Landfill. Before Bill’s folks arrived last week, Bill and I placed bets on how long it would take for Bill’s dad to bring up the dump.
When they arrived, Bill’s parents came up to my room to see me. Kathy, Bill’s mother then shuffled off to prepare lunch and Bill’s dad remained with me. “It looks like you have a lot of branches in the yard,” he remarked, referring to what remained of the tree that we lost on Independence Day. “I think Bill and I should get up early tomorrow and rent a trunk from Home Dept and bring all that stuff to the dump.” I believe it was the second or third sentence out of his mouth; I think it was a new record.
While Bill’s dad has done his part in contributing to his local landfill as well as ours, my mother has been working for years on creating enough trash to merit her own memorial landfill. During the Wall-E movie I half expected to see her name inscribed on one of the trash piles.
My mother has an enduring love affair with plastic wrap. Every morning my mother stood at the kitchen counter in a flowered housecoat and slippers surrounded by bags, lunch meat , condiments, fruit, etc. My mom made our school lunches every morning because, “there is nothing worse than a soggy sandwich that has been sitting all night” I completely agree with her on this. While we ate our breakfast, invariably one of us would shout an accusatory and disgruntled, “he’s lookin’ at me.” Once those words were spoken, silence was imposed on breakfast. In addition, my mother placed a cereal box in front of our each of our faces so we could not annoy each other using non-verbal approaches.. When I think about how hard it is to get two kids out the door, I marvel at my mother, “How did she do it?” I’ll never know (although I suspect the threat/use of corporal punishment played a large role).
When mom made our school lunches, everything was wrapped in plastic wrap or sealed in a plastic bag, including fruit. “Ma,” I would argue, “I don’t think you need to wrap the apple. Nature already did that.” Her reasoning was that as the apple warmed up the resulting condensation would endanger the integrity of the brown paper lunch bag. I guess I should have suggested that apples sit in a bowl at room temperature rather than in the refrigerator, but I knew my suggestion would fall flat and never be adopted into the our household’s “Rules and Regulation,” sort of like a bill being stuck in committee (See School House Rock, “I’m Just a Bill.” It’s how I learned about the legislative process, and I suspect that I am not the only one who relies on those short ditties to remember all sorts of interesting and important information.) She applied the same condensation rationale to our Tastykakes (Philly’s much better version of Little Debbie cakes). Our sandwiches were also put in baggies even though they were already wrapped in plastic wrap.
At a minimum, our lunches contained a sandwich, a piece of fruit, a Tastykake package, which included two identical treats (e.g., cupcakes, etc). Usually she also included chips of some kind and/or some candy for good measure. As my brothers entered their teens, they graduated to two sandwiches each. My mom would then place each humongous lunch in not one but two brown paper bags. The bag was always too full to allow her to fold the top over so she stapled the top sides together. If it was raining, the lunch was then put in a large plastic bag to protect it from the elements.
I’m sure my brothers ate their entire lunch, but there was no way I was going to make my way through that much food in less than 45 minutes. So I just redistributed the wealth. The first thing to get rid of was the excess meat from my sandwich. Despite repeated efforts to convince my mother to give me only one slice, she refused, “People will think I don’t feed you. Clearly my mother did not consider the possibility that my lunch bag, ready to pop at the seams, made it incredibly clear that no one in our household ever went hungry. It’s a good thing we were born with high metabolic rates. Marie usually ate my oranges because I prefer the juiced version. A set of pencil-thin twins usually devoured any other rejects.
My mom’s plastic wrap addiction is legendary beyond school cafeterias. Every year she makes trays of homemade cookies for friends and family. They are artistically arranged in a pyramid shape and the cookies are carefully interspersed so that each cookie is flanked by a different variety. Once the arrangement was complete, she began entombing the delectable and artistic food sculpture. I swear she went through one quarter of the roll for each tray. A friend of the family, a woman with a strong build and an often witty but uncensored tongue always jokes when my mother gives her the tray, mumbling things like, ‘It’ll take me to New Year’s to open this up."
Once I developed a conscience about the environment, I tried to make small changes in my lifestyle that would reduce my carbon footprint. Our household has hardly “gone green,” but I am trying to reduce, reuse, and recycle and to teach the children to do the same. Going of the grid or taking public transportation are not among my options these days. So I settled on doing little things to help in a small way. For example, with only two kids I reasoned that we did not needed a minivan and our little wagon serves us well. We do other quirky things: we wash and reuse gallon size Ziploc bags, we composte, and we support local farms through a CSA program (and the vegetables are so much better!!). After living in France and noticing that people often wore the same out fit two days in a row, I decided to bring the practice home with me. So now try to wear my clothes several times between washings (yes, this sometimes results in BO so it’s important to sniff the shirt frat boy style before donning it). And I try to ask myself when I make a purchase, “Can you live without it? Do your really need another pair of shoes?” Of course it is easier now to eschew random purchases for clothing because I have a lot and don’t really go anywhere anyway. For her 8th birthday, Amelia asked for donations to Heifer International instead of gifts (I was SOOOO proud of her). But all our small efforts never seem like enough.
Last winter NC was in the thick of a severe drought. We adopted the “If it’s yellow let it mellow; if it’s brown flush it down” policy in an effort to conserve water. Then a friend mentioned to me that you could use shower water to flush the toilets. I was fascinated: I never knew that if you poured enough water into a toilet it would flush on its own. So, I headed out to Home Depot and bought several buckets. I placed buckets in each tub and we began to collect shower water and use it to flush the toilets. I felt very proud of the fact that we were doing our part. Never mind that I was lifting incredibly heavy buckets with my two scrawny arms and out of breath afterwards. I really am a stupidly stubborn person.
We did this for several weeks when I mentioned my new daily toilet flushing ritual to my friend Kathryn. Kathryn has been saving bathwater to water her plants forever and I really admired her for doing this. Kathryn gently told me that perhaps someone on chemo could be excused from water conservation efforts. I felt like a penitent being given absolution and relief. It was the best confession ever
So I decide to “pay it forward.” Ordinarily, I collect the compost but Bill brings it to the bin because I cannot open the lid. He abhors this task. If I ever make a CD of all our fights (because we have the same ten arguments over and over and putting them on CD would save us the energy of actually having the argument; we could listen instead.), the compost bin argument would definitely make the cut. I nagged him incessantly about it, especially when it attracted fruit flies. He gave me his canned, “I’ll take care of it” response that really means, “Shut up. You are annoying me.” But after my talk with Kathryn I finally understood that our family needed to focus our energies on the important things: healing our broken and anxious hearts, making memories to last a lifetime, loving each other, and living while there is still breath.
For our family in this moment the compost ritual had to go. One night I dumped the contents of the compost bin into the trash and washed it. I told Bill that he was off the hook for the compost, “You are already juggling too many things. I think we can let the compost go for now.” His relief was palpable; I could her him sigh softly. I guess it was the first time that he realized that I did recognize his plight, his burden, his grief, his fears. I had felt these things all along and tried in small ways to convey my appreciation and lighten the load, but I think he needed to see concrete evidence to accept that I understood that he is just a man doing his very best to be everything for every one.
Unfortunately the carbon footprint of our household has grown exponentially, but it has nothing to do with terminating our compost efforts. Our home now looks like a medical supplies store: bags, cans, batteries (we go through 2D batteries every other day), flushes, syringes, dressing change kits and so much more. Our weekly garbage has increased by at least one-third. After all those years of teasing my poor mother, I may end up with a much larger landfill bearing my name.
For a while I felt guilty about my Sasquatch-sized carbon footprint, but then I realized I will not spend 80 years making trash. Perhaps it will even out; I may not have such a big footprint after all.
When they arrived, Bill’s parents came up to my room to see me. Kathy, Bill’s mother then shuffled off to prepare lunch and Bill’s dad remained with me. “It looks like you have a lot of branches in the yard,” he remarked, referring to what remained of the tree that we lost on Independence Day. “I think Bill and I should get up early tomorrow and rent a trunk from Home Dept and bring all that stuff to the dump.” I believe it was the second or third sentence out of his mouth; I think it was a new record.
While Bill’s dad has done his part in contributing to his local landfill as well as ours, my mother has been working for years on creating enough trash to merit her own memorial landfill. During the Wall-E movie I half expected to see her name inscribed on one of the trash piles.
My mother has an enduring love affair with plastic wrap. Every morning my mother stood at the kitchen counter in a flowered housecoat and slippers surrounded by bags, lunch meat , condiments, fruit, etc. My mom made our school lunches every morning because, “there is nothing worse than a soggy sandwich that has been sitting all night” I completely agree with her on this. While we ate our breakfast, invariably one of us would shout an accusatory and disgruntled, “he’s lookin’ at me.” Once those words were spoken, silence was imposed on breakfast. In addition, my mother placed a cereal box in front of our each of our faces so we could not annoy each other using non-verbal approaches.. When I think about how hard it is to get two kids out the door, I marvel at my mother, “How did she do it?” I’ll never know (although I suspect the threat/use of corporal punishment played a large role).
When mom made our school lunches, everything was wrapped in plastic wrap or sealed in a plastic bag, including fruit. “Ma,” I would argue, “I don’t think you need to wrap the apple. Nature already did that.” Her reasoning was that as the apple warmed up the resulting condensation would endanger the integrity of the brown paper lunch bag. I guess I should have suggested that apples sit in a bowl at room temperature rather than in the refrigerator, but I knew my suggestion would fall flat and never be adopted into the our household’s “Rules and Regulation,” sort of like a bill being stuck in committee (See School House Rock, “I’m Just a Bill.” It’s how I learned about the legislative process, and I suspect that I am not the only one who relies on those short ditties to remember all sorts of interesting and important information.) She applied the same condensation rationale to our Tastykakes (Philly’s much better version of Little Debbie cakes). Our sandwiches were also put in baggies even though they were already wrapped in plastic wrap.
At a minimum, our lunches contained a sandwich, a piece of fruit, a Tastykake package, which included two identical treats (e.g., cupcakes, etc). Usually she also included chips of some kind and/or some candy for good measure. As my brothers entered their teens, they graduated to two sandwiches each. My mom would then place each humongous lunch in not one but two brown paper bags. The bag was always too full to allow her to fold the top over so she stapled the top sides together. If it was raining, the lunch was then put in a large plastic bag to protect it from the elements.
I’m sure my brothers ate their entire lunch, but there was no way I was going to make my way through that much food in less than 45 minutes. So I just redistributed the wealth. The first thing to get rid of was the excess meat from my sandwich. Despite repeated efforts to convince my mother to give me only one slice, she refused, “People will think I don’t feed you. Clearly my mother did not consider the possibility that my lunch bag, ready to pop at the seams, made it incredibly clear that no one in our household ever went hungry. It’s a good thing we were born with high metabolic rates. Marie usually ate my oranges because I prefer the juiced version. A set of pencil-thin twins usually devoured any other rejects.
My mom’s plastic wrap addiction is legendary beyond school cafeterias. Every year she makes trays of homemade cookies for friends and family. They are artistically arranged in a pyramid shape and the cookies are carefully interspersed so that each cookie is flanked by a different variety. Once the arrangement was complete, she began entombing the delectable and artistic food sculpture. I swear she went through one quarter of the roll for each tray. A friend of the family, a woman with a strong build and an often witty but uncensored tongue always jokes when my mother gives her the tray, mumbling things like, ‘It’ll take me to New Year’s to open this up."
Once I developed a conscience about the environment, I tried to make small changes in my lifestyle that would reduce my carbon footprint. Our household has hardly “gone green,” but I am trying to reduce, reuse, and recycle and to teach the children to do the same. Going of the grid or taking public transportation are not among my options these days. So I settled on doing little things to help in a small way. For example, with only two kids I reasoned that we did not needed a minivan and our little wagon serves us well. We do other quirky things: we wash and reuse gallon size Ziploc bags, we composte, and we support local farms through a CSA program (and the vegetables are so much better!!). After living in France and noticing that people often wore the same out fit two days in a row, I decided to bring the practice home with me. So now try to wear my clothes several times between washings (yes, this sometimes results in BO so it’s important to sniff the shirt frat boy style before donning it). And I try to ask myself when I make a purchase, “Can you live without it? Do your really need another pair of shoes?” Of course it is easier now to eschew random purchases for clothing because I have a lot and don’t really go anywhere anyway. For her 8th birthday, Amelia asked for donations to Heifer International instead of gifts (I was SOOOO proud of her). But all our small efforts never seem like enough.
Last winter NC was in the thick of a severe drought. We adopted the “If it’s yellow let it mellow; if it’s brown flush it down” policy in an effort to conserve water. Then a friend mentioned to me that you could use shower water to flush the toilets. I was fascinated: I never knew that if you poured enough water into a toilet it would flush on its own. So, I headed out to Home Depot and bought several buckets. I placed buckets in each tub and we began to collect shower water and use it to flush the toilets. I felt very proud of the fact that we were doing our part. Never mind that I was lifting incredibly heavy buckets with my two scrawny arms and out of breath afterwards. I really am a stupidly stubborn person.
We did this for several weeks when I mentioned my new daily toilet flushing ritual to my friend Kathryn. Kathryn has been saving bathwater to water her plants forever and I really admired her for doing this. Kathryn gently told me that perhaps someone on chemo could be excused from water conservation efforts. I felt like a penitent being given absolution and relief. It was the best confession ever
So I decide to “pay it forward.” Ordinarily, I collect the compost but Bill brings it to the bin because I cannot open the lid. He abhors this task. If I ever make a CD of all our fights (because we have the same ten arguments over and over and putting them on CD would save us the energy of actually having the argument; we could listen instead.), the compost bin argument would definitely make the cut. I nagged him incessantly about it, especially when it attracted fruit flies. He gave me his canned, “I’ll take care of it” response that really means, “Shut up. You are annoying me.” But after my talk with Kathryn I finally understood that our family needed to focus our energies on the important things: healing our broken and anxious hearts, making memories to last a lifetime, loving each other, and living while there is still breath.
For our family in this moment the compost ritual had to go. One night I dumped the contents of the compost bin into the trash and washed it. I told Bill that he was off the hook for the compost, “You are already juggling too many things. I think we can let the compost go for now.” His relief was palpable; I could her him sigh softly. I guess it was the first time that he realized that I did recognize his plight, his burden, his grief, his fears. I had felt these things all along and tried in small ways to convey my appreciation and lighten the load, but I think he needed to see concrete evidence to accept that I understood that he is just a man doing his very best to be everything for every one.
Unfortunately the carbon footprint of our household has grown exponentially, but it has nothing to do with terminating our compost efforts. Our home now looks like a medical supplies store: bags, cans, batteries (we go through 2D batteries every other day), flushes, syringes, dressing change kits and so much more. Our weekly garbage has increased by at least one-third. After all those years of teasing my poor mother, I may end up with a much larger landfill bearing my name.
For a while I felt guilty about my Sasquatch-sized carbon footprint, but then I realized I will not spend 80 years making trash. Perhaps it will even out; I may not have such a big footprint after all.
Friday, September 26, 2008
Hillsborough, NC
I realized recently that for Bill and me Hillsborough is a sacred place. Of course, I only see that now as I reflect on the life we have shared. It seems like any other place, but it is here that Bill and I have made commitments and crossed thresholds into deeper phases of our shared life.
Hillsborough is a small, quaint, historical town due north of Chapel Hill. While the main streets of many small towns across America have fallen victim to the successes of big box stores and strip malls, Hillsborough has somehow managed to keep its small downtown thriving with used book stores, antique shops, and family owned restaurants like the Cajun-themed Tupelo’s. It boasts a number of historic homes and sites and makes for a lovely day trip.
I first became acquainted with Hillsborough during my cycling days. I started cycling in college, but cycling in Philadelphia was akin to having death wish. In Philly, I usually road along the Schuylkill River, which was dense with cars traveling at high speeds. It’s a wonder that my Schwinn and I survived.
When I arrived in North Carolina, I mourned the loss of big city life. The only thing that saved my sanity was the ability to cycle safely amid beautiful landscapes mere moments from my dorm. I had a southern route to Pittsboro, a western route to nowhere and a northern route to Hillsborough. I spent many a happy hour on my bike, passing by farms and their cows. Drivers graciously shared the road without feeling the need to flip me the bird or call me names that even a cuss-lovin’ gal like me won’t utter. I liked cycling here so much that spring semesters I routinely cut classes; I just couldn’t resist a long ride on one of those first warm days.
Bill and I met in early September and our courtship was rather fast and furious. I joke that we were married by our second date, which isn’t much of an exaggeration. With Christmas coming, I wanted to do something special. I drove up to Hillsborough to tour a bed and breakfast that I had seen on previous trips. The inn, the Hillsborough House, was built in 1797. The colonial building included a wide porch complete with rocking chairs and ceiling fans, in typically inviting Southern fashion. The innkeeper gave me a lovely tour and I was struck by the fabulously decorated family room with its black walls and bold artwork. After touring all the bedrooms, I settled on Miss Annie’s room and made a reservation for the first weekend in December.
I suppose it seems silly to “travel” to an inn 12 miles from one’s house, but what the trip lacked in geographic distance it more than made up for with change in scenery. We treated ourselves to a fine dinner, something not normally part of our graduate students lives. After dinner, we returned to the hotel and climbed into the bed and snuggled together amidst all those cozy white pillows, comforters, blankets. We had one of those blissful sleeps that feels like a pure indulgence rather than a bodily necessity.
The next morning we woke and enjoyed a lovely breakfast. We walked around the town and looked at all the charming old houses. Afterwards we went to the used bookstore and indulged ourselves with a few purchases. We spent the afternoon reading in bed and napping like two satiated kittens. We shared another dinner that was memorable for the fact that the restaurant actually offered a diary free apple crisp, and I was so happy because I never get to eat dessert at a restaurant.
Regrettably the weekend had to end. We awoke the next day and packed our bags before heading down to breakfast. I remember that there was a glazed cake on the table, which struck me as a rather decadent breakfast treat. After we checked out and loaded up the car, we climbed into the porch swing. We sat there for quite a while, holding hands. We said very little for there wasn’t much to say. We had fallen in love; there was little point in stating the obvious.
One day in July Bill and I were out looking for a coffee table. As you may recall our first attempt to buy a coffee table turned into dog ownership. And Watson wasn’t working out well as a cup holder. Off we went to the Hillsborough antique stores only to come up empty once again. As we stood outside our car, Bill eyed an estate jewelry store, “Should be go in?” I knew there was no turning back, “Sure.” I tried on rings and was especially fond on one with the diamond in a fishtail setting. We were altar bound; all that remained was the formal proposal.
One Saturday night we were supposedly meeting our friends Marc and Rachel at a new restaurant in Durham. Bill blindfolded me when I got into the car. I have a very god sense of direction and tried desperately to follow Bill’s turns. “We are not going to Durham,” I teased, “I know we are on a highway.” But I couldn’t figure out where we were headed. When the car came to a stop Bill took off the blindfold, and my eyes filled with tears. We were standing in front of the kitchen house suite of the Hillsborough House. Had I planned my own engagement, this was the very site I would have chosen.
Inside the kitchen house was the rocking chair Bill and I had refinished together. The room had a corner fireplace and a lovely bed with posts fashioned from braches that had been bent to meet and form a canopy that was filled with Christmas lights. A silver bucket held a bottle of champagne, water condensing along the sides, and a vase of flowers adorned the bedside table.
Bill sat me down on the rocking chair and posed on one knee. He told me how happy I had made him and how much he wanted to spend his life with me. I said “yes” through my tears and he slipped the ring onto my cold, blue finger. I had been sick for about 6 weeks; he knew exactly what he was doing and did it anyway.
It seems like Bill and I return again and again to Hillsborough when there is need to commit ourselves to each other. It has never been a conscious choice; it merely seems to have happened this way. The Hospice facility and the Unicorn Bereavement Center, where we all go for counseling, are located in Hillsborough. For all our other commitments Bill and I walked side-by-side, but on this occasion, I have been a few steps ahead for quite some time. Last Saturday, after another coughing fit I lay on the floor, “It’s time for me to go, Bill.” “I know honey; I see that now,” he replied, “We will call Hospice on Monday.” The inpatient admission was a surprise so once again Bill and I found ourselves in Hillsborough. And it is here that we have committed once again to each other: this time to walk this final leg of my journey, together. And the bitter irony is that we have to become closer than ever so that ultimately we can let go. No one tells you how much you fall in love during the “Til death do us part phase.” No one tells you how much is spoken between your hearts in those silent and vulnerable moments. No one tells you how much it hurts to recommit your love knowing that you will leave or be left behind. But I wouldn’t trade it. The alternative – not caring – would be far worse.
Hillsborough is a small, quaint, historical town due north of Chapel Hill. While the main streets of many small towns across America have fallen victim to the successes of big box stores and strip malls, Hillsborough has somehow managed to keep its small downtown thriving with used book stores, antique shops, and family owned restaurants like the Cajun-themed Tupelo’s. It boasts a number of historic homes and sites and makes for a lovely day trip.
I first became acquainted with Hillsborough during my cycling days. I started cycling in college, but cycling in Philadelphia was akin to having death wish. In Philly, I usually road along the Schuylkill River, which was dense with cars traveling at high speeds. It’s a wonder that my Schwinn and I survived.
When I arrived in North Carolina, I mourned the loss of big city life. The only thing that saved my sanity was the ability to cycle safely amid beautiful landscapes mere moments from my dorm. I had a southern route to Pittsboro, a western route to nowhere and a northern route to Hillsborough. I spent many a happy hour on my bike, passing by farms and their cows. Drivers graciously shared the road without feeling the need to flip me the bird or call me names that even a cuss-lovin’ gal like me won’t utter. I liked cycling here so much that spring semesters I routinely cut classes; I just couldn’t resist a long ride on one of those first warm days.
Bill and I met in early September and our courtship was rather fast and furious. I joke that we were married by our second date, which isn’t much of an exaggeration. With Christmas coming, I wanted to do something special. I drove up to Hillsborough to tour a bed and breakfast that I had seen on previous trips. The inn, the Hillsborough House, was built in 1797. The colonial building included a wide porch complete with rocking chairs and ceiling fans, in typically inviting Southern fashion. The innkeeper gave me a lovely tour and I was struck by the fabulously decorated family room with its black walls and bold artwork. After touring all the bedrooms, I settled on Miss Annie’s room and made a reservation for the first weekend in December.
I suppose it seems silly to “travel” to an inn 12 miles from one’s house, but what the trip lacked in geographic distance it more than made up for with change in scenery. We treated ourselves to a fine dinner, something not normally part of our graduate students lives. After dinner, we returned to the hotel and climbed into the bed and snuggled together amidst all those cozy white pillows, comforters, blankets. We had one of those blissful sleeps that feels like a pure indulgence rather than a bodily necessity.
The next morning we woke and enjoyed a lovely breakfast. We walked around the town and looked at all the charming old houses. Afterwards we went to the used bookstore and indulged ourselves with a few purchases. We spent the afternoon reading in bed and napping like two satiated kittens. We shared another dinner that was memorable for the fact that the restaurant actually offered a diary free apple crisp, and I was so happy because I never get to eat dessert at a restaurant.
Regrettably the weekend had to end. We awoke the next day and packed our bags before heading down to breakfast. I remember that there was a glazed cake on the table, which struck me as a rather decadent breakfast treat. After we checked out and loaded up the car, we climbed into the porch swing. We sat there for quite a while, holding hands. We said very little for there wasn’t much to say. We had fallen in love; there was little point in stating the obvious.
One day in July Bill and I were out looking for a coffee table. As you may recall our first attempt to buy a coffee table turned into dog ownership. And Watson wasn’t working out well as a cup holder. Off we went to the Hillsborough antique stores only to come up empty once again. As we stood outside our car, Bill eyed an estate jewelry store, “Should be go in?” I knew there was no turning back, “Sure.” I tried on rings and was especially fond on one with the diamond in a fishtail setting. We were altar bound; all that remained was the formal proposal.
One Saturday night we were supposedly meeting our friends Marc and Rachel at a new restaurant in Durham. Bill blindfolded me when I got into the car. I have a very god sense of direction and tried desperately to follow Bill’s turns. “We are not going to Durham,” I teased, “I know we are on a highway.” But I couldn’t figure out where we were headed. When the car came to a stop Bill took off the blindfold, and my eyes filled with tears. We were standing in front of the kitchen house suite of the Hillsborough House. Had I planned my own engagement, this was the very site I would have chosen.
Inside the kitchen house was the rocking chair Bill and I had refinished together. The room had a corner fireplace and a lovely bed with posts fashioned from braches that had been bent to meet and form a canopy that was filled with Christmas lights. A silver bucket held a bottle of champagne, water condensing along the sides, and a vase of flowers adorned the bedside table.
Bill sat me down on the rocking chair and posed on one knee. He told me how happy I had made him and how much he wanted to spend his life with me. I said “yes” through my tears and he slipped the ring onto my cold, blue finger. I had been sick for about 6 weeks; he knew exactly what he was doing and did it anyway.
It seems like Bill and I return again and again to Hillsborough when there is need to commit ourselves to each other. It has never been a conscious choice; it merely seems to have happened this way. The Hospice facility and the Unicorn Bereavement Center, where we all go for counseling, are located in Hillsborough. For all our other commitments Bill and I walked side-by-side, but on this occasion, I have been a few steps ahead for quite some time. Last Saturday, after another coughing fit I lay on the floor, “It’s time for me to go, Bill.” “I know honey; I see that now,” he replied, “We will call Hospice on Monday.” The inpatient admission was a surprise so once again Bill and I found ourselves in Hillsborough. And it is here that we have committed once again to each other: this time to walk this final leg of my journey, together. And the bitter irony is that we have to become closer than ever so that ultimately we can let go. No one tells you how much you fall in love during the “Til death do us part phase.” No one tells you how much is spoken between your hearts in those silent and vulnerable moments. No one tells you how much it hurts to recommit your love knowing that you will leave or be left behind. But I wouldn’t trade it. The alternative – not caring – would be far worse.
Thursday, September 25, 2008
Hallelujah for Hospice
I've been sitting here all day waiting for today's essay to pop into my head. Usually it presents itself the night before while I am falling asleep. But I fell asleep quickly last night depriving my inner author of adequate time for cogitation.
I slept so soundly last night. It was one of those lovely, peaceful sleeps that are more often a part of my fantasy life than my reality. What a pleasant change to wake up refreshed. Perhaps my sleep center is not wired properly. My mother says the nurses applauded when I left the nursery because I stayed up all night long every night during my newborn stay. And I have had sleep issues, off and on, ever since.
So far the symptom management is going well. I am on a continuous pump of fentanyl (yes, it doesn't make me sleep or treat pain but we are using it for the cough). It is on a patient controlled anesthesia pump so I get a baseline amount and if a coughing fit starts, I can give myself a bolus. I took a shower today without having a coughing fit, which is a hopeful sign. Tomorrow Bill and I will take a walk and see how it goes. So far we have been able to avoid the nausea and vomiting side effects, but the itching is pretty severe. So that's the next item on the list of puzzles to solve.
Now that the edema has been treated, we are starting to wonder if the skin on my legs is tightening from the scleroderma. When I first developed the disease that skin was virtually unaffected. But suddenly, my thighs feel like they have turned to stone. What a greedy little disease.
The staff here is amazing. They spring into action at the first sign of a coughing fit and help me in every way possible. This is truly the most "caring" healthcare institution I have ever experienced. Surely hospice attracts a special type of person but I also think the shift in purpose from cure to care is essential in creating an environment where the patient's comfort is truly the central and unifying focal point. Perhaps it sounds like hyperbole but I feel like a child in the lap of a loving parent. I feel so completely and utterly at peace.
I slept so soundly last night. It was one of those lovely, peaceful sleeps that are more often a part of my fantasy life than my reality. What a pleasant change to wake up refreshed. Perhaps my sleep center is not wired properly. My mother says the nurses applauded when I left the nursery because I stayed up all night long every night during my newborn stay. And I have had sleep issues, off and on, ever since.
So far the symptom management is going well. I am on a continuous pump of fentanyl (yes, it doesn't make me sleep or treat pain but we are using it for the cough). It is on a patient controlled anesthesia pump so I get a baseline amount and if a coughing fit starts, I can give myself a bolus. I took a shower today without having a coughing fit, which is a hopeful sign. Tomorrow Bill and I will take a walk and see how it goes. So far we have been able to avoid the nausea and vomiting side effects, but the itching is pretty severe. So that's the next item on the list of puzzles to solve.
Now that the edema has been treated, we are starting to wonder if the skin on my legs is tightening from the scleroderma. When I first developed the disease that skin was virtually unaffected. But suddenly, my thighs feel like they have turned to stone. What a greedy little disease.
The staff here is amazing. They spring into action at the first sign of a coughing fit and help me in every way possible. This is truly the most "caring" healthcare institution I have ever experienced. Surely hospice attracts a special type of person but I also think the shift in purpose from cure to care is essential in creating an environment where the patient's comfort is truly the central and unifying focal point. Perhaps it sounds like hyperbole but I feel like a child in the lap of a loving parent. I feel so completely and utterly at peace.
Wednesday, September 24, 2008
Birdfeeders
Up north, spring was often a disappointing transition between winter and summer. Sometimes winter hovered through April, like a house guest overstaying her welcome. Frosts often damaged early blooms, and old winter coats too often obscured new Easter dresses. For me, spring only seemed like a season in theory. There were no flowering trees or special birds to announce the return of warm weather, just a gradually rising mercury and longer days that promised a reprieve from the grays of winter.
The first spring I lived in North Carolina I was struck by the beauty of the season. Beginning in early March the daffodils bloomed, heralding the arrival of spring. I guess the crocuses bloomed first, but I didn't notice them. Other perennials followed in succession: tulips, hyacinths, lilies, and on and on. Likewise the trees flowered in hues of cream and pink and purple with each tree taking it's turn at center stage. And then the birds came: cardinals, blue jays, golden finches, nuthatches, and bluebirds. Finally I understood why the Resurrection occupies its place on the calendar. That first spring the world around me seemed to birth and bloom and grow in a crescendo made for my eyes rather than my ears. I was an awe-struck city girl racing around campus with a camera in an effort to record an experience with nature unlike any I had ever known.
Years ago, whenever I would pick a paint color for a room, I would ask myself, "Would color do you want this room to be when you are dying?" I guess it shows how long I have been thinking about my death. Once scleroderma came into my life and accepted my mortality, there was no going back. My death became an everyday aspect of my life. I do not mean to say that I spent part of everyday in fetal position. Of course, there were many times when I did curl into a ball and cry inconsolably. And I often cried in the shower and the car and in other random, unpredictable places. But the awareness of my likely premature death yielded more than moments of catharsis.
I suppose that in some ways I became a more calculating person. I did may things purposefully, knowing that my remaining time was short. I abandoned any plans to seek an academic job with tenure. Deep in my heart I knew I did not want that life even if I was healthy. I liked to do too many other things that I feared that I would have to surrender to be a successful academic. And being sick gave me a justifiable reason for opting out of a career path that I did not want. The background noise of my mortality played into everything else in my life as well: the choice to have children; the determination to stay married; the documentation of my children's lives through journals, photos, and collections of their artwork; the desire to make life beautiful with gardens and parties and costumes and birthdays parties. In many ways, my illness has been my life's director, showing me how to play my part so that it was genuine and real. It taught me to listen to my heart rather than the brain that ruled my world during my healthy years.
I would sit in a room, puzzling over colors. I would picture myself relaxing in a chair or sofa, covered with a blanket. In my mind's eye I would see the future me staring out the window to the birdfeeders where I imagined beautiful feathered creatures converging for an afternoon snack. And I would try to imagine how it would feel to watch the birds while my life slipped away.
When we walked into my hospice room, the curtains were open to reveal a sliding glass door and a patio complete with a table and chairs. Nearby stood two birdfeeders and I felt immediate peace. I knew I was where I needed to be, resting and staring out the window at the birds just as I always imagined it.
This hospice room is cosy, with homemade quilts and blankets. My patio overlooks a bucolic setting. My heart, soul, and body are in the capable and loving hands of the staff and my symptoms are coming under control. We are making progress, but there is no rush or hurry. They want to see me comfortable before they let me go home to live out my remaining time. I truly believe that choosing hospice with not only improve the quality of my life but also the duration. If I can be comfortable instead of writhing in pain and coughing violently, I can nurture my will to live. I can still fight if I just don't have to fight so damn hard.
The first spring I lived in North Carolina I was struck by the beauty of the season. Beginning in early March the daffodils bloomed, heralding the arrival of spring. I guess the crocuses bloomed first, but I didn't notice them. Other perennials followed in succession: tulips, hyacinths, lilies, and on and on. Likewise the trees flowered in hues of cream and pink and purple with each tree taking it's turn at center stage. And then the birds came: cardinals, blue jays, golden finches, nuthatches, and bluebirds. Finally I understood why the Resurrection occupies its place on the calendar. That first spring the world around me seemed to birth and bloom and grow in a crescendo made for my eyes rather than my ears. I was an awe-struck city girl racing around campus with a camera in an effort to record an experience with nature unlike any I had ever known.
Years ago, whenever I would pick a paint color for a room, I would ask myself, "Would color do you want this room to be when you are dying?" I guess it shows how long I have been thinking about my death. Once scleroderma came into my life and accepted my mortality, there was no going back. My death became an everyday aspect of my life. I do not mean to say that I spent part of everyday in fetal position. Of course, there were many times when I did curl into a ball and cry inconsolably. And I often cried in the shower and the car and in other random, unpredictable places. But the awareness of my likely premature death yielded more than moments of catharsis.
I suppose that in some ways I became a more calculating person. I did may things purposefully, knowing that my remaining time was short. I abandoned any plans to seek an academic job with tenure. Deep in my heart I knew I did not want that life even if I was healthy. I liked to do too many other things that I feared that I would have to surrender to be a successful academic. And being sick gave me a justifiable reason for opting out of a career path that I did not want. The background noise of my mortality played into everything else in my life as well: the choice to have children; the determination to stay married; the documentation of my children's lives through journals, photos, and collections of their artwork; the desire to make life beautiful with gardens and parties and costumes and birthdays parties. In many ways, my illness has been my life's director, showing me how to play my part so that it was genuine and real. It taught me to listen to my heart rather than the brain that ruled my world during my healthy years.
I would sit in a room, puzzling over colors. I would picture myself relaxing in a chair or sofa, covered with a blanket. In my mind's eye I would see the future me staring out the window to the birdfeeders where I imagined beautiful feathered creatures converging for an afternoon snack. And I would try to imagine how it would feel to watch the birds while my life slipped away.
When we walked into my hospice room, the curtains were open to reveal a sliding glass door and a patio complete with a table and chairs. Nearby stood two birdfeeders and I felt immediate peace. I knew I was where I needed to be, resting and staring out the window at the birds just as I always imagined it.
This hospice room is cosy, with homemade quilts and blankets. My patio overlooks a bucolic setting. My heart, soul, and body are in the capable and loving hands of the staff and my symptoms are coming under control. We are making progress, but there is no rush or hurry. They want to see me comfortable before they let me go home to live out my remaining time. I truly believe that choosing hospice with not only improve the quality of my life but also the duration. If I can be comfortable instead of writhing in pain and coughing violently, I can nurture my will to live. I can still fight if I just don't have to fight so damn hard.
Monday, September 22, 2008
My Life in Pictures, Part I
This is the nearly finished version of the slideshow I have been working on. Unfortunately the entire slideshow is too big to upload so this is just part I, pre-Bill and the kids. I hemmed and hawed about putting it on the web, especially since I didn't "ok" it with anyone featured. So, if you have an issue with your picture being posted, let me know and I will remove it. If anyone has brilliant ideas about posting the entire thing (It's 350.4 MB; I tried youtube and that failed as well), let me know.
There was something very cathartic about putting this together. It was a perversely pleasurable experience to look back on my life this way and gave me a sense of peace. Actually, I highly recommend this activity for anyone, if only to laugh at how you hairstyles and "fashion sense" have evolved over the years. I may make ones of each child and one of just Bill and me. For me, these activities are a great way to pass the time and to remind myself of what a wonderful ride this life has been and still is ...
I hope you enjoy it. I don't know if the music will play but the accompanying song should be What a Wonderful World (Louis Armstrong).
"The reports of my death ..."
Mark Twain was once quoted as saying, "The reports of my death have been greatly exaggerated." I could empathize with the old chap this weekend when I opened up a card to Bill from a publishing company, assuming that it was junk mail. As it turns out it was from the publishing house with whom Bill is publishing a textbook this December. It was a condolence card filled with several hand written messages expressing sympathy over my passing. It turns out that Bill's co-author, a Frenchman, was not able to get his point across precisely. We had a good laugh over it.
Bill's parents and sister, Ann, were here all weekend. Bill's immediate family includes some of the most productive, hard working people I have ever met. No one ever sits down unless it is mealtime. The weekend was a whirlwind of shopping expeditions, pantry organizing, kitchen cleaning, picture framing and hanging (at my request), and many, many other tasks. When they left this morning the house was pristine and the photo collage I had been plotting for month was finally a reality in our family room. I was so happy.
I had to be honest with myself about the photo collage. I wanted it because I wanted Bill and the children to see what moments I had singled out to display from this wonderful life of ours. But, secretly, I think I was also marking my territory. The time will come when I am gone and Bill and the kids will need to move on. And I want them to do that, truly. But I want the person who fills my shoes to know that I was here first: I loved this man, I bore these children, I nursed, and rocked and reared and loved them. I don't want her to replace me; I want her to complement me. I want for her to allow me to exist in the memories and hearts of my children. Somehow hanging those pictures on the wall made me feel like I was staking my claim, though I know they can come done just as easily as they went up.
While the Steinbach's were busy in their usual way, I was busy as well. I lay in bed and prepared the slideshow that I want shown at my funeral. Marie had scanned in many photos for me from the pre-digital era and I added photos from recent years. I tried to put the photos in chronological order but it is not always easy to tell the two year old from the two and one-half year old. No matter. I set the slide show to music: Louis Armstrong's What a Wonderful World and Edwin McCain's I Could Not Ask for More. I suppose the latter seems like a strange choice for someone in my situation, but it reflects my true feelings. I have had a wonderful life, filled with a loving family, terrific friendships, an adoring husband, and two blessed children. I have enjoyed my time on this planet immensely. Even this weekend, as sick as I felt, I still made it to three soccer games and cheered the kids on sitting in my wheelchair and breathing through an oxygen cannula. Maybe the lines "every prayer has been answered" and "every dream I've had's come true" aren't exactly valid. But they are close enough. For whatever reason, I don't think I was destined for a long life.
Making the slideshow was bittersweet. I enjoyed reminiscing about the sweet moments of my life, but I wept over having to let it go when I feel like I could have done and enjoyed so much more.
I begin Hospice Care today. I will be admitted to the inpatient facility today or tomorrow so they can try to figure out my coughing, nausea/vomiting, and edema. Hopefully within two days we will be able to come up with a medication regimen that keeps me comfortable and I can return home. I don't know if I will have Internet access there but if I can post, I will.
Bill's parents and sister, Ann, were here all weekend. Bill's immediate family includes some of the most productive, hard working people I have ever met. No one ever sits down unless it is mealtime. The weekend was a whirlwind of shopping expeditions, pantry organizing, kitchen cleaning, picture framing and hanging (at my request), and many, many other tasks. When they left this morning the house was pristine and the photo collage I had been plotting for month was finally a reality in our family room. I was so happy.
I had to be honest with myself about the photo collage. I wanted it because I wanted Bill and the children to see what moments I had singled out to display from this wonderful life of ours. But, secretly, I think I was also marking my territory. The time will come when I am gone and Bill and the kids will need to move on. And I want them to do that, truly. But I want the person who fills my shoes to know that I was here first: I loved this man, I bore these children, I nursed, and rocked and reared and loved them. I don't want her to replace me; I want her to complement me. I want for her to allow me to exist in the memories and hearts of my children. Somehow hanging those pictures on the wall made me feel like I was staking my claim, though I know they can come done just as easily as they went up.
While the Steinbach's were busy in their usual way, I was busy as well. I lay in bed and prepared the slideshow that I want shown at my funeral. Marie had scanned in many photos for me from the pre-digital era and I added photos from recent years. I tried to put the photos in chronological order but it is not always easy to tell the two year old from the two and one-half year old. No matter. I set the slide show to music: Louis Armstrong's What a Wonderful World and Edwin McCain's I Could Not Ask for More. I suppose the latter seems like a strange choice for someone in my situation, but it reflects my true feelings. I have had a wonderful life, filled with a loving family, terrific friendships, an adoring husband, and two blessed children. I have enjoyed my time on this planet immensely. Even this weekend, as sick as I felt, I still made it to three soccer games and cheered the kids on sitting in my wheelchair and breathing through an oxygen cannula. Maybe the lines "every prayer has been answered" and "every dream I've had's come true" aren't exactly valid. But they are close enough. For whatever reason, I don't think I was destined for a long life.
Making the slideshow was bittersweet. I enjoyed reminiscing about the sweet moments of my life, but I wept over having to let it go when I feel like I could have done and enjoyed so much more.
I begin Hospice Care today. I will be admitted to the inpatient facility today or tomorrow so they can try to figure out my coughing, nausea/vomiting, and edema. Hopefully within two days we will be able to come up with a medication regimen that keeps me comfortable and I can return home. I don't know if I will have Internet access there but if I can post, I will.
Saturday, September 20, 2008
Amy’s Answering Machine
A friend of mine recently gave me a CD of the book “Amy’s Answering Machine.” For those of you unfamiliar with it, the CD includes 28 tracks that revolve around a message or series of messages left on one young New Yorker’s answering machine by her mother. I had read the book a few years ago, but the CD is needed to experience fully this particular work.
The author, Amy (Amilia) Borkowsky, must be an only child and her mother’s raison d’être because her mother clearly devotes much of her existence to worrying about how incredibly random and unlikely events could befall her daughter. More importantly, she appears to make every effort to use telephone messages to prevent such random events, such as her daughter being the victim of a gang-related crime while taking out the trash in her terry cloth robe, which happens to be red – a gang color.
Bill, Grace and I listened to the CD yesterday and I thought we were all going to wet our pants. Bill was literally doubled over during one track called “Lambskin Condoms.” My favorite one was titled ‘Where’s Amila?” and involved not only two messages to the daughter but also a half a dozen messages from Amila’s friends telling her that her mother called them at some ungodly hour trying to find her.
This was where I got sentimental for my own mother. Thankfully, my mother did not feel the need to call me and leave inane messages on my machine, but she did often call with some random news item that she thought might have some bearing on my life. “Where’s Amila?” really got to me because one summer I worked as a health economist for the World Bank. During that time, I was stationed mostly in Nairobi, Kenya. Calls home were expensive and I tried to keep them to a minimum. After not hearing from me for 5 days, my mother was in a panic. Surely I had been killed, kidnapped, or something similarly drastic. Armed with only two pieces of information – my name and my “home base” in Nairobi – she called the World Bank’s general number. Now I remind you, this was before the Internet was widely available. The woman was relying on 4-1-1. Somehow with these two snippets of information, she managed to get connected to my boss. Out of 8,000 people in the DC office, she found the right person. The woman has the tenacity of a pit-bull. After she finished with him I received word to “Call your mother.” I, of course, was teased about this relentlessly for the remainder of the project.
It could have been worse. My mother actually rejected most of the superstitious ways of her mother. My grandmother had a litany of behaviors that should have been avoided to ensure one’s safety. For example, photos of pregnant women were strictly forbidden. We have two of my mother and you cannot see her head in one of them; in both pictures she is in the background and captured on film purely be accident. When my pregnant mother was asked to stand as godmother for my cousin Steven, my grandmother nearly had a coronary. Apparently to be a godmother while pregnant was to invite harm to the child in your womb. “Ma,” my mother would reason with her, “Why would God do that? It makes no sense.” My mother stood for Steven; my grandmother was not happy.
My favorite of the many tales about my grandmother involves the “malocchio” and my eldest brother’s baby carriage. The malocchio is the evil eye. The Italian gesture associated with the evil eye involves holding your middle and ring fingers down with your thumb and pointing with your index and pinky fingers. Whenever my grandmother came to see my mother and Anthony, which was every day, she would check the stroller to make sure there was a pair of scissors under the cushion. You see, the points of the scissors make the malocchio ricochet back onto the evildoer. Apparently my mother always found the cushion moved after my grandmother’s visit. (As an aside my grandmother would leave my parents’ apartment if my mother let Anthony “cry it out.” She would get mad at my mom or not picking him up. She’d walk the two blocks home and call my mother, “Did you pick up that baby yet?” she’d ask in Italian. When my mother responded, “No,” my grandmother would yell, “Va fungool! [Fuck you]” and slam down the phone. My grandmother must have been a trip.)
My cousin Debbie gave the malocchio to someone at work once. A co-worker, an African American man, saw her and asked her what she was doing. Shortly thereafter Debbie's intended victim was fired. Her co-worker was then quoted as saying, “Don’t make Debbie angry. She’s got some evil fingers.”
I told Bill about the malocchio when we were dating and he had a field day with the concept. He used to walk around the apartment with his hands tucked into pockets like he was preparing to draw. Then he would pull them out in malocchio formation and start pointing at things. “Stop it,” I would cry even though I don’t really believe in the evil eye.
While my mother did not buy into the superstitions, she was really into Catholic voodoo. Selling a house? Gotta bury St. Joseph in the front yard. Getting married? Better put a statue of the Virgin in every window of the house to ensure good weather (Her proof that this works is that the Saturday we got married was the only Saturday in a 13-week period that it did not rain. It does not explain, however, why it rained on two of my three brother’s weddings). In my childhood home, we built Mary shrines for the month of May and had various statues of the Saints around the house. Even now, the St. Theresa statue my mother gave us is staring at me.
The most humiliating Catholic voodoo ritual occurred the summer after my senior year of high school. I had hoodwinked my parents into letting me go to the Jersey shore with my high school boyfriend, Tim, for a long weekend. This was an unimaginable feat in my parents’ house. To this day, I cannot believe I persuaded them to let me go. My approach was honest and straightforward. Before my dad came home from work, I approached my mother after dinner. I explained that I wanted to take the trip. I also told her that all my friends told me to lie about it and that I probably could have gotten away with doing that. But instead, I chose to be honest with her as a sign of my maturity. “We’ll talk about it when your dad gets home,” she replied. My dad was enjoying a mouthful of food when my mother blurted out, “Your daughter wants to spend the weekend at the shore with Tim, alone.” My father, literally, spit out his food. There was much debate and negotiation and in the end, I won. There were two conditions: 1) Tim and I had to sit through an embarrassing abstinence-only talk with my dad and 2) my mother would hold a blessing ritual before we left.
On the day of our departure, Tim, I, and the other couple going were made to kneel on my parents’ living room floor. My mom then proceeded to bless us with holy water and holy oil while murmuring prayers. We all had the sense to stare straight ahead lest my mother smack one of us. You can imagine the shit I caught for this. At least everyone else had a crazy Catholic mother as well, but theirs were of the Irish variant.
I’m glad Amy Borkowsky shared her mother with the world. I liked “meeting” her, and she made me grateful that my mother was downright boring in comparison.
The author, Amy (Amilia) Borkowsky, must be an only child and her mother’s raison d’être because her mother clearly devotes much of her existence to worrying about how incredibly random and unlikely events could befall her daughter. More importantly, she appears to make every effort to use telephone messages to prevent such random events, such as her daughter being the victim of a gang-related crime while taking out the trash in her terry cloth robe, which happens to be red – a gang color.
Bill, Grace and I listened to the CD yesterday and I thought we were all going to wet our pants. Bill was literally doubled over during one track called “Lambskin Condoms.” My favorite one was titled ‘Where’s Amila?” and involved not only two messages to the daughter but also a half a dozen messages from Amila’s friends telling her that her mother called them at some ungodly hour trying to find her.
This was where I got sentimental for my own mother. Thankfully, my mother did not feel the need to call me and leave inane messages on my machine, but she did often call with some random news item that she thought might have some bearing on my life. “Where’s Amila?” really got to me because one summer I worked as a health economist for the World Bank. During that time, I was stationed mostly in Nairobi, Kenya. Calls home were expensive and I tried to keep them to a minimum. After not hearing from me for 5 days, my mother was in a panic. Surely I had been killed, kidnapped, or something similarly drastic. Armed with only two pieces of information – my name and my “home base” in Nairobi – she called the World Bank’s general number. Now I remind you, this was before the Internet was widely available. The woman was relying on 4-1-1. Somehow with these two snippets of information, she managed to get connected to my boss. Out of 8,000 people in the DC office, she found the right person. The woman has the tenacity of a pit-bull. After she finished with him I received word to “Call your mother.” I, of course, was teased about this relentlessly for the remainder of the project.
It could have been worse. My mother actually rejected most of the superstitious ways of her mother. My grandmother had a litany of behaviors that should have been avoided to ensure one’s safety. For example, photos of pregnant women were strictly forbidden. We have two of my mother and you cannot see her head in one of them; in both pictures she is in the background and captured on film purely be accident. When my pregnant mother was asked to stand as godmother for my cousin Steven, my grandmother nearly had a coronary. Apparently to be a godmother while pregnant was to invite harm to the child in your womb. “Ma,” my mother would reason with her, “Why would God do that? It makes no sense.” My mother stood for Steven; my grandmother was not happy.
My favorite of the many tales about my grandmother involves the “malocchio” and my eldest brother’s baby carriage. The malocchio is the evil eye. The Italian gesture associated with the evil eye involves holding your middle and ring fingers down with your thumb and pointing with your index and pinky fingers. Whenever my grandmother came to see my mother and Anthony, which was every day, she would check the stroller to make sure there was a pair of scissors under the cushion. You see, the points of the scissors make the malocchio ricochet back onto the evildoer. Apparently my mother always found the cushion moved after my grandmother’s visit. (As an aside my grandmother would leave my parents’ apartment if my mother let Anthony “cry it out.” She would get mad at my mom or not picking him up. She’d walk the two blocks home and call my mother, “Did you pick up that baby yet?” she’d ask in Italian. When my mother responded, “No,” my grandmother would yell, “Va fungool! [Fuck you]” and slam down the phone. My grandmother must have been a trip.)
My cousin Debbie gave the malocchio to someone at work once. A co-worker, an African American man, saw her and asked her what she was doing. Shortly thereafter Debbie's intended victim was fired. Her co-worker was then quoted as saying, “Don’t make Debbie angry. She’s got some evil fingers.”
I told Bill about the malocchio when we were dating and he had a field day with the concept. He used to walk around the apartment with his hands tucked into pockets like he was preparing to draw. Then he would pull them out in malocchio formation and start pointing at things. “Stop it,” I would cry even though I don’t really believe in the evil eye.
While my mother did not buy into the superstitions, she was really into Catholic voodoo. Selling a house? Gotta bury St. Joseph in the front yard. Getting married? Better put a statue of the Virgin in every window of the house to ensure good weather (Her proof that this works is that the Saturday we got married was the only Saturday in a 13-week period that it did not rain. It does not explain, however, why it rained on two of my three brother’s weddings). In my childhood home, we built Mary shrines for the month of May and had various statues of the Saints around the house. Even now, the St. Theresa statue my mother gave us is staring at me.
The most humiliating Catholic voodoo ritual occurred the summer after my senior year of high school. I had hoodwinked my parents into letting me go to the Jersey shore with my high school boyfriend, Tim, for a long weekend. This was an unimaginable feat in my parents’ house. To this day, I cannot believe I persuaded them to let me go. My approach was honest and straightforward. Before my dad came home from work, I approached my mother after dinner. I explained that I wanted to take the trip. I also told her that all my friends told me to lie about it and that I probably could have gotten away with doing that. But instead, I chose to be honest with her as a sign of my maturity. “We’ll talk about it when your dad gets home,” she replied. My dad was enjoying a mouthful of food when my mother blurted out, “Your daughter wants to spend the weekend at the shore with Tim, alone.” My father, literally, spit out his food. There was much debate and negotiation and in the end, I won. There were two conditions: 1) Tim and I had to sit through an embarrassing abstinence-only talk with my dad and 2) my mother would hold a blessing ritual before we left.
On the day of our departure, Tim, I, and the other couple going were made to kneel on my parents’ living room floor. My mom then proceeded to bless us with holy water and holy oil while murmuring prayers. We all had the sense to stare straight ahead lest my mother smack one of us. You can imagine the shit I caught for this. At least everyone else had a crazy Catholic mother as well, but theirs were of the Irish variant.
I’m glad Amy Borkowsky shared her mother with the world. I liked “meeting” her, and she made me grateful that my mother was downright boring in comparison.
Thursday, September 18, 2008
The Sock Bag
Sorry this is a double post b/c I cannot get today's to appear before yesterdays and "The Sock Bag" is not listed in my list tof posts ... weird. I don't do technology well.
When I was little, my parents kept a brown paper bag stashed behind a hideous orange chair in our basement (It was the 70s; everything was orange and avocado green). Each time my mom folded a load of laundry, she dropped any single socks into the bag in hopes that, eventually, its partner would show up. About once a month, one of us would get assigned sock bag duty. This involved dumping the contents of the bag on the floor, searching for matches, and marrying the wayward pairs.
Given my OCD-like qualities, it is no surprise that I have followed in my parents sock-bag footsteps. About once a month I empty the bag and look for matches. Bill looks at me crouched on our bedroom floor surrounded by socks and shakes his head. To him, this is a ridiculous waste of energy. I've tried to explain to him that each time I empty the sock bag I find at least 6 pairs. I paraphrase my freshman developmental psychology professor to show Bill that my behavior is perfectly rational because I am always rewarded for my efforts. He remains unimpressed.
Yesterday I was feeling downright spunky. Of course, these days spunky means I can walk around the upstairs without feeling like my heart is going to leap out of my chest. Grace (yes, she's here again surrounding us all with her love and, well, grace) and Ashley, our new nanny, were busy helping the kids clean their rooms. I needed something to occupy myself. I spied the sock bag sitting in the corner of my bedroom. I crossed the room and emptied the bag on the floor. I found about 9 matches immediately. It was going to be a good sock bag day. As I continued to sort through the socks I noticed a lot of them were socks that were recently purchased, "They can't be missing their partners already." Then I experienced a stroke of genius. I went to Bill's sock drawer and looked for single socks. Sure enough there were about 8 or 9. This shows a blatant disregard for laundry protocol, loose socks are supposed to go into the sock bag.
Then I pulled Aidan's sock drawer out of the chest and carried it to my room. That child has about 50 pairs of socks but refuses to wear them (He also refuses to wear underwear, going commando at all times). The child's feet and sneakers smell so badly I fear I may die from asphyxiation if I am ever left in a confined space with them. For awhile I kept buying different kinds of socks in an effort to find something acceptable to his tender feet, but the magical socks remain elusive. There were loads of single socks lurking in Aidan's drawer and, before long, I had over 2 dozen matches. The OCD center of my brain was deliriously happy.
Then I called Amelia, "Honey, go to your sock drawer and bring me all your single socks." She returned with another half dozen or so and I performed more sock marriages.
Last AND least was my drawer. I am proud to say that I had few single socks lurking there. At least I follow laundry protocol. I did eye a suspicious pair, however. They did not appear to be the same socks but they were married nonetheless. Now, I am a strong supporter of alternative lifestyles among humans (and may I ask, preemptively, please no comments about my illness being God's wrath because I support gay marriage. I am highly confident that God has better things to do then worry about my position on this issue. I am fragile; please no mean comments), but I will only tolerate sock marriages between identical socks. So I unpaired the socks and put them with their rightful partner.
At the end of all this I had over three dozens matches, an all time sock-bag record. I felt so victorious that I allowed myself to throw out the socks that have been in the bag for, literally, years without ever finding their partners. Of course, their matches will turn up next week, but I think I can cope with that.
I had no idea socks could make me so happy.
When I was little, my parents kept a brown paper bag stashed behind a hideous orange chair in our basement (It was the 70s; everything was orange and avocado green). Each time my mom folded a load of laundry, she dropped any single socks into the bag in hopes that, eventually, its partner would show up. About once a month, one of us would get assigned sock bag duty. This involved dumping the contents of the bag on the floor, searching for matches, and marrying the wayward pairs.
Given my OCD-like qualities, it is no surprise that I have followed in my parents sock-bag footsteps. About once a month I empty the bag and look for matches. Bill looks at me crouched on our bedroom floor surrounded by socks and shakes his head. To him, this is a ridiculous waste of energy. I've tried to explain to him that each time I empty the sock bag I find at least 6 pairs. I paraphrase my freshman developmental psychology professor to show Bill that my behavior is perfectly rational because I am always rewarded for my efforts. He remains unimpressed.
Yesterday I was feeling downright spunky. Of course, these days spunky means I can walk around the upstairs without feeling like my heart is going to leap out of my chest. Grace (yes, she's here again surrounding us all with her love and, well, grace) and Ashley, our new nanny, were busy helping the kids clean their rooms. I needed something to occupy myself. I spied the sock bag sitting in the corner of my bedroom. I crossed the room and emptied the bag on the floor. I found about 9 matches immediately. It was going to be a good sock bag day. As I continued to sort through the socks I noticed a lot of them were socks that were recently purchased, "They can't be missing their partners already." Then I experienced a stroke of genius. I went to Bill's sock drawer and looked for single socks. Sure enough there were about 8 or 9. This shows a blatant disregard for laundry protocol, loose socks are supposed to go into the sock bag.
Then I pulled Aidan's sock drawer out of the chest and carried it to my room. That child has about 50 pairs of socks but refuses to wear them (He also refuses to wear underwear, going commando at all times). The child's feet and sneakers smell so badly I fear I may die from asphyxiation if I am ever left in a confined space with them. For awhile I kept buying different kinds of socks in an effort to find something acceptable to his tender feet, but the magical socks remain elusive. There were loads of single socks lurking in Aidan's drawer and, before long, I had over 2 dozen matches. The OCD center of my brain was deliriously happy.
Then I called Amelia, "Honey, go to your sock drawer and bring me all your single socks." She returned with another half dozen or so and I performed more sock marriages.
Last AND least was my drawer. I am proud to say that I had few single socks lurking there. At least I follow laundry protocol. I did eye a suspicious pair, however. They did not appear to be the same socks but they were married nonetheless. Now, I am a strong supporter of alternative lifestyles among humans (and may I ask, preemptively, please no comments about my illness being God's wrath because I support gay marriage. I am highly confident that God has better things to do then worry about my position on this issue. I am fragile; please no mean comments), but I will only tolerate sock marriages between identical socks. So I unpaired the socks and put them with their rightful partner.
At the end of all this I had over three dozens matches, an all time sock-bag record. I felt so victorious that I allowed myself to throw out the socks that have been in the bag for, literally, years without ever finding their partners. Of course, their matches will turn up next week, but I think I can cope with that.
I had no idea socks could make me so happy.
Fetal
Ok, sorry folks, but I am going to torture you with another poem. The essay I intended to post for today is still gestating. That's how writing works for me sometimes. The theme, words, stories, etc. gestate on a back burner sometimes for days before they are ready.
I just gave up on trying to nap; I've never been a good daytime sleeper. This poem came to me and I decided it will have to do for today.
Painting courtesy of Ellen Joffe-Halpern, Williamstown, Massachusetts
Fetal
Fetal
Waiting for sleep
One foot cradled in the sole of its partner
An arm draped across another
Absently
Turning towards myself
Inward
For comfort
Inside small parts quake
Surrounding tissues swaddle
"There, there, you mustn't shake so.
There is no energy to spare
for fear"
I just gave up on trying to nap; I've never been a good daytime sleeper. This poem came to me and I decided it will have to do for today.
Painting courtesy of Ellen Joffe-Halpern, Williamstown, Massachusetts
Fetal
Fetal
Waiting for sleep
One foot cradled in the sole of its partner
An arm draped across another
Absently
Turning towards myself
Inward
For comfort
Inside small parts quake
Surrounding tissues swaddle
"There, there, you mustn't shake so.
There is no energy to spare
for fear"
The Sock Bag
When I was little, my parents kept s brown paper bag stashed behind a hideous orange chair in our basement (It was the 70s; everything was orange and avocado green). Each time my mom folded a load of laundry, she dropped any single socks into the bag in hopes that, eventually, its partner would show up. About once a month, one of us would get assigned sock bag duty. This involved dumping the contents of the bag on the floor, searching for matches, and marrying the wayward pairs.
Given my OCD-like qualities, it is no surprise that I have followed in my parents sock-bag footsteps. About once a month I empty the bag and look for matches. Bill looks at me crouched on our bedroom floor surrounded by socks and shakes his head. To him, this is a ridiculous waste of energy. I've tried to explain to him that each time I empty the sick bag I find at least 6 pairs. I paraphrase by freshman developmental psychology professor to show Bill that my behavior is perfectly rationale because I am always rewarded for my efforts. He remains unimpressed.
Yesterday I was feeling downright spunky. Of course, these days spunky means I can walk around the upstairs without feeling like my heart is going to leap out of my chest. Grace (yes, she's here again surrounding us all with her love and, well, grace) and Ashley, our new nanny, were busy helping the kids clean their rooms. I needed something to occupy myself. I spied the sock bag sitting in the corner of my bedroom. I crossed the room and emptied the bag on the floor. I found about 9 matches immediately. It was going to be a good sock bag day. As I continued to sort through the socks I noticed a lot of them were socks that were recently purchased, "They can't be missing their partners already." Then I experienced a stroke of genius. I went to Bill's sock drawer and looked for single socks. Sure enough there were about 8 or 9. This shows a blatant disregard for laundry protocol, loose socks are supposed to go into the sock bag.
Then I pulled Aidan's sock drawer out of the chest and carried it to my room. That child has about 50 pairs of socks but refuses to wear them (He also refuses to wear underwear, going commando at all times). The child's feet and sneakers smell so badly I fear I may die from asphyxiation if I am ever left in a confined space with them. For awhile I kept buying different kinds of socks in an effort to find something acceptable to his tender feet, but the magical socks remain elusive. There were loads of single socks lurking in Aidan's drawer and, before long, I had over 2 dozen matches. The OCD center of my brain was deliriously happy.
Then I called Amelia, "Honey, go to your sock drawer and bring me all your single socks." She returned with another half dozen or so and I performed more sock marriages.
Last AND least was my drawer. I am proud to say that I had few single socks lurking there. At least I follow laundry protocol. I did eye a suspicious pair, however. They did not appear to be the same socks but they were married nonetheless. Now, I am a strong supporter of alternative lifestyles among humans (and may I ask, preemptively, please no comments about my illness being God's wrath because I support gay marriage. I am highly confident that God has better things to do then worry about my position on this issue. I am fragile; please no mean comments), but I will only tolerate sock marriages between identical socks. So I unpaired the socks and put them with their rightful partner.
At the end of all this I had over three dozens matches, an all time sock-bag record. I felt so victorious that I allowed myself to throw out the socks that have been in the bag for, literally, years without ever finding their partners. Of course, their matches will turn up next week, but I think I can cope with that.
I had no idea socks could make me so happy.
Given my OCD-like qualities, it is no surprise that I have followed in my parents sock-bag footsteps. About once a month I empty the bag and look for matches. Bill looks at me crouched on our bedroom floor surrounded by socks and shakes his head. To him, this is a ridiculous waste of energy. I've tried to explain to him that each time I empty the sick bag I find at least 6 pairs. I paraphrase by freshman developmental psychology professor to show Bill that my behavior is perfectly rationale because I am always rewarded for my efforts. He remains unimpressed.
Yesterday I was feeling downright spunky. Of course, these days spunky means I can walk around the upstairs without feeling like my heart is going to leap out of my chest. Grace (yes, she's here again surrounding us all with her love and, well, grace) and Ashley, our new nanny, were busy helping the kids clean their rooms. I needed something to occupy myself. I spied the sock bag sitting in the corner of my bedroom. I crossed the room and emptied the bag on the floor. I found about 9 matches immediately. It was going to be a good sock bag day. As I continued to sort through the socks I noticed a lot of them were socks that were recently purchased, "They can't be missing their partners already." Then I experienced a stroke of genius. I went to Bill's sock drawer and looked for single socks. Sure enough there were about 8 or 9. This shows a blatant disregard for laundry protocol, loose socks are supposed to go into the sock bag.
Then I pulled Aidan's sock drawer out of the chest and carried it to my room. That child has about 50 pairs of socks but refuses to wear them (He also refuses to wear underwear, going commando at all times). The child's feet and sneakers smell so badly I fear I may die from asphyxiation if I am ever left in a confined space with them. For awhile I kept buying different kinds of socks in an effort to find something acceptable to his tender feet, but the magical socks remain elusive. There were loads of single socks lurking in Aidan's drawer and, before long, I had over 2 dozen matches. The OCD center of my brain was deliriously happy.
Then I called Amelia, "Honey, go to your sock drawer and bring me all your single socks." She returned with another half dozen or so and I performed more sock marriages.
Last AND least was my drawer. I am proud to say that I had few single socks lurking there. At least I follow laundry protocol. I did eye a suspicious pair, however. They did not appear to be the same socks but they were married nonetheless. Now, I am a strong supporter of alternative lifestyles among humans (and may I ask, preemptively, please no comments about my illness being God's wrath because I support gay marriage. I am highly confident that God has better things to do then worry about my position on this issue. I am fragile; please no mean comments), but I will only tolerate sock marriages between identical socks. So I unpaired the socks and put them with their rightful partner.
At the end of all this I had over three dozens matches, an all time sock-bag record. I felt so victorious that I allowed myself to throw out the socks that have been in the bag for, literally, years without ever finding their partners. Of course, their matches will turn up next week, but I think I can cope with that.
I had no idea socks could make me so happy.
Wednesday, September 17, 2008
Read me a Story
When I was in college I used to get severe menstrual cramps. Surprisingly, my college boyfriend understood my misery. His sister, just 15 months his junior, suffered from them as well. Each month he would break out the heating pad and the motrin and tenderly rub my stomach. On one particular month during our senior year I was in terrible pain. He decided to read aloud to me from Robert Fulghum's All I Needed to Know I Learned in Kindergarten. All my life I had been a voracious reader. I still remember lying on the double bed in my brothers' room as a small kindergarten student, reading aloud to my parents. Surely my parents read to me as a small child, but I have no memory of that precious experience.
Curled under my boyfriend's boring blue, likely Eddie Bauer, comforter, the words coming from his mouth felt like analgesia of the best kind. The content and the cadence lulled me into a peaceful place far away from my body's pain. I felt loved and cherished, a medicine in its own rite. It was a moment of healing.
Last night was Orientation Night at the school. I have never missed a school event despite the hellacious year I experienced this past year. As we got out of the car Amelia pointed to my oxygen tank, "We are't bringing that, are we?" I replied that I wanted to have it with me. "Then I'd rather not go," she cried out with tears streaming down my face. I guess the wheelchair is one thing but oxygen is quite another. She asks so little of me that I thought I could at least try. "Ok, honey, we'll leave it here."
The evening began with a spaghetti dinner and classroom orientations were scheduled to follow. As dinner was wrapping up my coughing began. It became clear that we needed to make a rapid exit. Bill discharged the kids to the car of other parents and assured them he'd return shortly. I managed to puke just after we exited the building. Fortunately we live only 0.5 miles from the school. Before long I was changed into clean clothes and resting in bed. Then Bill returned to the school.
When the children returned home, Bill reminded them to do their required 20 minutes of reading. Aidan entered my room, book in hand, to find me crying, "Why are you crying mommy?" "I just feel a little sad, honey," I replied wiping away my tears. "Please don't cry mommy. Please," he implored, crawling under the covers and snuggling against me. "I bet I would stop crying if you read to me," I suggested.
He opened his book on weather, the unit he is studying in second grade science. I am humbled by these science units because I realize how little I actually know. Was I not paying attention? Did they not bother to teach us the difference between a sirocco an a mistral? Did I elect to forget that material to make way for the lyrics, melodies, and harmonies of virtually every 70s song that hit the radio waves? Whatever the reason, I know almost nothing about weather. My knowledge is based solely on a glance out the window and temperature reports on the web. Beyond that I am completely ignorant, which explains why I never have an umbrella when I need one.
He read to me in his sweet voice about winds, hurricanes, and tornadoes. Little boys love destruction of all kinds, even "Acts of God." While he read I looked down at his freckles, especially the star-shaped one on the bridge of his nose, just slightly to the right. He seems to get more and more freckles with each passing year. It wasn't long ago that I used to read to him using my most dramatic voice. Reading children's stories was the remaining outlet for my inner actress that still missed her days in community theater. Back then Aidan had just a smattering of those adorable brown spots adorning his face. We read Eric Carle, Kevin Henkes (my very favorite), David Kirk, and David Shannon. Storytime and lullabies were the highlight of every day, at least they were for me. Night after night, we giggled on the floor of Amelia's room, nursing a love of reading that I hoped would last a lifetime. So far, so good.
After Aidan read to me, Amelia shared her American Girl catalog. I'm not a fan, but she loves her doll so I indulge her. She went through the catalog page by page, remarking on various items. A child of reasonable expectations and good financial sense, she commented on the relative costs of different items -- what she perceived as a bargain and what she thought was overpriced -- and set the stage nicely for her planned purchases. Crafty child, that one is.
I sang them their lullabies there in my bed so I wouldn't have to expend the energy to walk them to their rooms. As they went off to sleep I lay in bed and had my nightly debate: is this half hour of joy enough for me? Is it enough to endure the pain, vomiting, loneliness, etc. More importantly, is it enough for them? Once again I abandon the debate without finding a resolution.
Today my friend Susan came to visit and brought a magazine called Brain Child. She offered to read to me unsolicited. The essay was called Baby Weight and essentially told the tale of one woman's radical transformation from an independent 30-something to a doting mom. As she falls in love with her child, all her ridiculous preconceived notions of motherhood evaporating like a puddle on a hot August day, I recalled my own love affairs with these children of mine. I remembered my constant awe of Amelia, physically changing rapidly in every possible way but staying the same happy person she was born as. And I recalled wanting Aidan's infancy to last forever, nursing him on the sofa before we settled into our joint afternoon slumber. Somehow time slips away; there is always a new phase: another change, another challenge, another milestone, another magical moment.
And I guess that's why I keep choosing to stay, I cannot bear to miss what comes next.
Curled under my boyfriend's boring blue, likely Eddie Bauer, comforter, the words coming from his mouth felt like analgesia of the best kind. The content and the cadence lulled me into a peaceful place far away from my body's pain. I felt loved and cherished, a medicine in its own rite. It was a moment of healing.
Last night was Orientation Night at the school. I have never missed a school event despite the hellacious year I experienced this past year. As we got out of the car Amelia pointed to my oxygen tank, "We are't bringing that, are we?" I replied that I wanted to have it with me. "Then I'd rather not go," she cried out with tears streaming down my face. I guess the wheelchair is one thing but oxygen is quite another. She asks so little of me that I thought I could at least try. "Ok, honey, we'll leave it here."
The evening began with a spaghetti dinner and classroom orientations were scheduled to follow. As dinner was wrapping up my coughing began. It became clear that we needed to make a rapid exit. Bill discharged the kids to the car of other parents and assured them he'd return shortly. I managed to puke just after we exited the building. Fortunately we live only 0.5 miles from the school. Before long I was changed into clean clothes and resting in bed. Then Bill returned to the school.
When the children returned home, Bill reminded them to do their required 20 minutes of reading. Aidan entered my room, book in hand, to find me crying, "Why are you crying mommy?" "I just feel a little sad, honey," I replied wiping away my tears. "Please don't cry mommy. Please," he implored, crawling under the covers and snuggling against me. "I bet I would stop crying if you read to me," I suggested.
He opened his book on weather, the unit he is studying in second grade science. I am humbled by these science units because I realize how little I actually know. Was I not paying attention? Did they not bother to teach us the difference between a sirocco an a mistral? Did I elect to forget that material to make way for the lyrics, melodies, and harmonies of virtually every 70s song that hit the radio waves? Whatever the reason, I know almost nothing about weather. My knowledge is based solely on a glance out the window and temperature reports on the web. Beyond that I am completely ignorant, which explains why I never have an umbrella when I need one.
He read to me in his sweet voice about winds, hurricanes, and tornadoes. Little boys love destruction of all kinds, even "Acts of God." While he read I looked down at his freckles, especially the star-shaped one on the bridge of his nose, just slightly to the right. He seems to get more and more freckles with each passing year. It wasn't long ago that I used to read to him using my most dramatic voice. Reading children's stories was the remaining outlet for my inner actress that still missed her days in community theater. Back then Aidan had just a smattering of those adorable brown spots adorning his face. We read Eric Carle, Kevin Henkes (my very favorite), David Kirk, and David Shannon. Storytime and lullabies were the highlight of every day, at least they were for me. Night after night, we giggled on the floor of Amelia's room, nursing a love of reading that I hoped would last a lifetime. So far, so good.
After Aidan read to me, Amelia shared her American Girl catalog. I'm not a fan, but she loves her doll so I indulge her. She went through the catalog page by page, remarking on various items. A child of reasonable expectations and good financial sense, she commented on the relative costs of different items -- what she perceived as a bargain and what she thought was overpriced -- and set the stage nicely for her planned purchases. Crafty child, that one is.
I sang them their lullabies there in my bed so I wouldn't have to expend the energy to walk them to their rooms. As they went off to sleep I lay in bed and had my nightly debate: is this half hour of joy enough for me? Is it enough to endure the pain, vomiting, loneliness, etc. More importantly, is it enough for them? Once again I abandon the debate without finding a resolution.
Today my friend Susan came to visit and brought a magazine called Brain Child. She offered to read to me unsolicited. The essay was called Baby Weight and essentially told the tale of one woman's radical transformation from an independent 30-something to a doting mom. As she falls in love with her child, all her ridiculous preconceived notions of motherhood evaporating like a puddle on a hot August day, I recalled my own love affairs with these children of mine. I remembered my constant awe of Amelia, physically changing rapidly in every possible way but staying the same happy person she was born as. And I recalled wanting Aidan's infancy to last forever, nursing him on the sofa before we settled into our joint afternoon slumber. Somehow time slips away; there is always a new phase: another change, another challenge, another milestone, another magical moment.
And I guess that's why I keep choosing to stay, I cannot bear to miss what comes next.
Tuesday, September 16, 2008
What we choose to see
I woke up this morning and the first thing I did was stumble out of bed in time to puke into a bucket I keep close at hand "just in case." It was clearly going to be one of those days. As the episode continued, I paged Bill repeatedly. Sometimes the pages just don't go through. Finally he called me back, "I am on my way." Bill took care of me until my friend Amy arrived. We chatted for a while and then she left me to rest while remaining in the house in case I needed her. I had to wonder to myself if we will soon enter the phase of the, "death watch," during which friends come and sit so that I am not alone. I hope we aren't there yet; I hope today is just a bad day.
Sunday night Amelia and I were watching "Little House on the Prairie" again. As we sat down together on the sofa, she reached out to touch my upper arm. "Your arms are getting so much bigger," she observed, grinning broadly and clapping her hands together. I didn't have the heart to tell her that some of the girth is edema nor the sad reality that my weight gain has not translated into an improvement in my lung function as we had hoped. I couldn't bear to tell her how desparately my heart is trying to compensate for the inadequacies of my lungs. Nor could I share my fears that my heart cannot compensate for much longer.
I wondered how my more robust physique is enough to override all the other signs of my growing debilitation: being on oxygen, needing a wheelchair, hiring a nanny to meet their bus and help prepare dinner. Does she choose not to see all the signs of my demise or is she merely holding fast to the belief that once I gain enough weight, all will return to normal? I worry that she is in denial and that she will be blindsided by my death. But I also don't want to force her to acknowledge a reality that she is clearly unready to face.
Aidan is the opposite. He sees his world going to hell and he's pissed. Two weeks ago during a fight with me he yelled, "I know you are dying; I just wish you would die sooner." The next day when we was calm and snuggly, I brought up his statement. "I know how you feel, Aidan. You know something terrible is going to happen and part of you just wants to get it over with. You needn't feel badly about feeling that way. I feel that way sometimes too," I confessed. "I just want you to die, but then I want you to come back better." I didn't realize that a part of him did not understand that my death was permanent, "Aidan when I die I am not coming back. At least not in this body. You won't be able to see me or touch me." He buried his little head in my lap and cried and cried. There was nothing else to do but hold him.
For BIll and I reality hit home in a real and final way on Friday. The results of the exercise test clearly showed that my heart and lungs are not functioning well, explaining my complete intolerance to activity. On Sunday Bill ad I talked again. "No more tests," I told him, "I am tired of suffering." Tears welled in Bill's eyes, "I love you too much to see you continue to suffer. I just want to make you as comfortable as possible so that you can enjoy your remaining time and we can make some more memories." We talked about moving into acceptance, together this time. It's an important first step.
I vaccillate between wanting more time to make more memories, to tuck the children in one more night, to cuddle with them on the sofa and read. There are days when this minimalist life is more than enough. And then there are days like today, which start off with my head in a bowl and during which I spend hours in bed feeling physically awful and anxious, and I wish death would hurry. The reality is that what I want, or the way it vaccilates, matters little. It will come in its own time
Sunday night Amelia and I were watching "Little House on the Prairie" again. As we sat down together on the sofa, she reached out to touch my upper arm. "Your arms are getting so much bigger," she observed, grinning broadly and clapping her hands together. I didn't have the heart to tell her that some of the girth is edema nor the sad reality that my weight gain has not translated into an improvement in my lung function as we had hoped. I couldn't bear to tell her how desparately my heart is trying to compensate for the inadequacies of my lungs. Nor could I share my fears that my heart cannot compensate for much longer.
I wondered how my more robust physique is enough to override all the other signs of my growing debilitation: being on oxygen, needing a wheelchair, hiring a nanny to meet their bus and help prepare dinner. Does she choose not to see all the signs of my demise or is she merely holding fast to the belief that once I gain enough weight, all will return to normal? I worry that she is in denial and that she will be blindsided by my death. But I also don't want to force her to acknowledge a reality that she is clearly unready to face.
Aidan is the opposite. He sees his world going to hell and he's pissed. Two weeks ago during a fight with me he yelled, "I know you are dying; I just wish you would die sooner." The next day when we was calm and snuggly, I brought up his statement. "I know how you feel, Aidan. You know something terrible is going to happen and part of you just wants to get it over with. You needn't feel badly about feeling that way. I feel that way sometimes too," I confessed. "I just want you to die, but then I want you to come back better." I didn't realize that a part of him did not understand that my death was permanent, "Aidan when I die I am not coming back. At least not in this body. You won't be able to see me or touch me." He buried his little head in my lap and cried and cried. There was nothing else to do but hold him.
For BIll and I reality hit home in a real and final way on Friday. The results of the exercise test clearly showed that my heart and lungs are not functioning well, explaining my complete intolerance to activity. On Sunday Bill ad I talked again. "No more tests," I told him, "I am tired of suffering." Tears welled in Bill's eyes, "I love you too much to see you continue to suffer. I just want to make you as comfortable as possible so that you can enjoy your remaining time and we can make some more memories." We talked about moving into acceptance, together this time. It's an important first step.
I vaccillate between wanting more time to make more memories, to tuck the children in one more night, to cuddle with them on the sofa and read. There are days when this minimalist life is more than enough. And then there are days like today, which start off with my head in a bowl and during which I spend hours in bed feeling physically awful and anxious, and I wish death would hurry. The reality is that what I want, or the way it vaccilates, matters little. It will come in its own time
Monday, September 15, 2008
Butterflies
I have never been much of a poet. My mother recently gave me a book of poems that I wrote as a young child and that she had sweetly saved for thirty years. I assume that I wrote poems for school assignments over the years, but I only ever remember liking one of them.
My sophomore year of year school we had this cockamamie English class that rotated across four different teachers over defined blocks of time, each block focusing on a different aspect of a English: literature, speech, etc. Moya Kaporch was one of the four English teachers. She was an incredibly sweet, enthusiastic, young woman with bright red hair cropped closely to her head, an enormous dimple, and a ready smile. Moya loved learning and teaching; she could hardly contain her joy as she imparted her wisdom. Quite honestly I hated English classes, but I loved Moya and her class. After all my years of education, I still consider Moya one of the best teachers I ever had: a good teacher can make something you detest into something you enjoy. Moya did that for me and the written word.
During the Moya rotation of sophmore English, I had to write a poem. I was in crisis mode, “I can’t write a poem.” I thought to myself. Poetry befuddled me at this point. My dad always used to quote a line from “Trees” by Joyce Kilmer, “I think that I shall never see a poem as lovely as a tree,” when I was a kid. It never made sense to me: trees and poems didn’t seem comparable. One sees a tree but reads a poem. I just didn’t get it.
I puzzled over the assignment. My little 15 year-old life and opinions didn’t seem worthy of poetic rhyme. Then I thought of a particular classmate, a lovely blond girl with a captivating smile who was the belle of every prom in a 10-mile radius. Everyone was jealous of her and the way boys turned to putty in her well-meaning but apparently powerful hands. As Alana Davis sings, “everyone harbors a secret hatred for the prettiest girl in the room.” Because this girl and I sang together in a group at the local boys’ Catholic high school, I got to know her and get past all my preconceptions about her. She was sweet, kind, and funny. I enjoyed being with her at rehearsals, and she became my friend. So that night I wrote a poem about her. I wrote about the way everyone else seemed to see her and judge her without giving her a chance. I wrote about the beautiful person underneath the physical beauty.
The next day Moya randomly selected my poem from the pile. I was panicked. Ours was a small school and the subject of the poem would be obvious to everyone in the room. Moya read the poem aloud, “Oh, Michelle, you must have written this during the storm last night.” Then she returned the poem to the pile of them on her desk and read a few more. The following day, Moya called me to her desk and informed me that someone had stolen my work. Apparently it had been lifted from the pile on her desk. I remember feeling frustrated because the words had come from my heart in a single flow and I didn’t think I could recreate it. It was the end of my poetry career.
Some twenty years later, my sister-in-law asked me to write a poem for her wedding. “Oy, again with the poetry assignment,” I thought to myself. Bill was out at the lab one night and the kids were in bed so I decided to try to come up with something. I felt like the Grinch with his sore puzzler, “What could I possibly say to a young new couple about marriage?”
Seven years into our marriage I was missing excitement and butterflies. I wanted to feel like a swooning newlywed again. Then I remembered one night standing in front of the mirror before bed. I was wearing this beat up T-shirt, the kind comfortable from years of wash and wear. Glancing at the holes that rimmed the collar seam, I began to laugh at myself, “You’re a sight.” Then it hit me, the very characteristic that I treasured in this ratty shirt – comfort – I failed to appreciate in my own marriage. With that image in mind I started writing about butterflies and comfort and what my marriage really meant to me. As I wrote tears pour from my eyes, down my cheeks and soaked my turtleneck. Bill returned home to find me with puffy reds eyes surrounded by wads of wet tissues. “Are you ok?” he asked. “Yes, I’m fine,” I replied.
While my mother and Bill’s mother loved the poem, Jane wasn’t too thrilled with it initially. I wasn’t surprised by Jane’s reaction, the poem doesn’t paint the most romantic picture of love. And I admit that the words would tend to take the air out of the newlywed balloon. But ultimately Jane did ask me to read it at the wedding and I managed to get through it without crying because for me the poem was a gift to Bill more so than Jane and Josh.
Butterflies don’t last
When a romance is new
We greet it with the same anticipation we reserve for spring
When the world seems ripe with possibility and promise
When a romance is new
The sight of our beloved fills our bellies with butterflies
And we feel reborn into this otherworldly emotion that thrills and cajoles us
Delighting in what remains undiscovered and unknown
Butterflies compel us to follow them.
And follow we do
For there really is no other choice
But butterflies don’t last
Like the winged creatures that grace our fleeting summer days
The butterflies of infatuation move on and make way
For love
For infatuation is not sustainable
It will not endure the inevitable ebbs and flows of life
It cannot bear the weight of life’s tragedies
It imprisons us in a fragile house of cards
But love
Love envelopes us with comfort like a shirt perfect from years of wash and wear
And with that comfort we find freedom
to dance without fear of embarrassment
to bare our souls without fear of ridicule
to trust without fear of disappointment
to give without fear of being taken for granted
to err without fear of reprisal
to be ourselves without fear of rejection
With love
At the end of the day we fall into bed with the person
who echoes our laughter and wipes our tears
who shares our dreams and mourns our losses
who holds our hand, just because
who accepts us as we are, with all our imperfections
You miss the butterflies when they go
Longing for their intensity and their elusiveness
Set them free with gratitude
Without them, your love would not exist
But it is in letting them go that you truly become free
To love
I still don’t think I have the whole poet gift. To me, poems just seem like prose with shorter lines broken up in pieces. This suggests to me that I am missing something essential in my appreciation of this medium. But, then again, every once in a while a poem sneaks up on me and I am always glad when it does so.
Sunday, September 14, 2008
The Voice of Reason, Part II
On Monday night I was sitting on the floor cleaning out one of the bathroom cabinets and mumbling irritably to myself. I heard Bill come into the room and open the linen closet. “Bill,” I began trying desperately not to raise my voice, “Stephanie and I spent a lot of time cleaning out and organizing the closet and these cabinets and they are already a mess again. Could you please put things back neatly where they belong?” There was silence. I looked up to find not Bill but Marie staring back at me.
“I’m sorry,” she stammered looking guilty, “I should have stopped you. I don’t know why I didn’t.” I continued to grouse about Bill’s refusal to keep the house in order. That’s when Marie, to her credit, braved dangerous waters. “He can’t, Michelle. His plate is already completely full. He is bearing an enormous burden and doing it as well as he possibly can. I can’t do one more thing, no matter how small it seems to be. He is at his maximum.”
I began to cry tears of anger, guilt and frustration. I wasn’t angry with her: she was telling me the truth as gently and lovingly as possible. I was angry at this situation that I cannot rectify. I do not have enough energy to keep things organized the way I once did, but messy pantries, closets, and drawers still rattle the obsessive compulsive in me. Along with my anger I felt guilty for demanding even more from Bill, who is already drowning in turbulent waters and facing the reality that the future will lead him to a far more treacherous place before he reaches a calm shore. And, as always, I felt frustration that life had tied my hands behind my back and left me so reliant on others to accomplish the simplest of tasks.
“I’m sorry,” Marie cooed, “I shouldn’t have said anything.” I assured her that she had done nothing wrong, that I needed to hear it. In realty, Marie is the only person who could get away with saying those words to me. Within anyone else I would have become angry and defensive. “I try so hard to accept this illness – the physical and emotional suffering, the changes it has brought into my life – and I try not to complain, but all of this is incredibly difficult for me too,” I explained.
As I drifted off to sleep that night I continued to weep. The next morning, while Marie and I organized my office, I was finally able to articulate succinctly my dilemma, “I feel like this disease is demanding that I become a saint.” I feel like I must bear this cross without complaint, feel only gratitude for my blessings (which I fully recognize are many), and acknowledge the reality that my life is still better than the lives of most people on the planet. I feel like “being a good person” demands that I feel no anger, no bitterness, and no desire. “But I am not a saint, I am just a human being and I can only take so much,” I admitted.
I sat there in child’s pose with Marie rubbing my back. She felt guilty for her perceived role in my sadness, but she had merely brought existing feelings into focus; she had done me a favor. I realize now that I am desperately afraid of devolving into a nasty, bitter person as my body continues to fail. I fear that I will ultimately lose myself – my spirit – to this disease and that seems far worse to me than losing my body.
“I’m sorry,” she stammered looking guilty, “I should have stopped you. I don’t know why I didn’t.” I continued to grouse about Bill’s refusal to keep the house in order. That’s when Marie, to her credit, braved dangerous waters. “He can’t, Michelle. His plate is already completely full. He is bearing an enormous burden and doing it as well as he possibly can. I can’t do one more thing, no matter how small it seems to be. He is at his maximum.”
I began to cry tears of anger, guilt and frustration. I wasn’t angry with her: she was telling me the truth as gently and lovingly as possible. I was angry at this situation that I cannot rectify. I do not have enough energy to keep things organized the way I once did, but messy pantries, closets, and drawers still rattle the obsessive compulsive in me. Along with my anger I felt guilty for demanding even more from Bill, who is already drowning in turbulent waters and facing the reality that the future will lead him to a far more treacherous place before he reaches a calm shore. And, as always, I felt frustration that life had tied my hands behind my back and left me so reliant on others to accomplish the simplest of tasks.
“I’m sorry,” Marie cooed, “I shouldn’t have said anything.” I assured her that she had done nothing wrong, that I needed to hear it. In realty, Marie is the only person who could get away with saying those words to me. Within anyone else I would have become angry and defensive. “I try so hard to accept this illness – the physical and emotional suffering, the changes it has brought into my life – and I try not to complain, but all of this is incredibly difficult for me too,” I explained.
As I drifted off to sleep that night I continued to weep. The next morning, while Marie and I organized my office, I was finally able to articulate succinctly my dilemma, “I feel like this disease is demanding that I become a saint.” I feel like I must bear this cross without complaint, feel only gratitude for my blessings (which I fully recognize are many), and acknowledge the reality that my life is still better than the lives of most people on the planet. I feel like “being a good person” demands that I feel no anger, no bitterness, and no desire. “But I am not a saint, I am just a human being and I can only take so much,” I admitted.
I sat there in child’s pose with Marie rubbing my back. She felt guilty for her perceived role in my sadness, but she had merely brought existing feelings into focus; she had done me a favor. I realize now that I am desperately afraid of devolving into a nasty, bitter person as my body continues to fail. I fear that I will ultimately lose myself – my spirit – to this disease and that seems far worse to me than losing my body.
Saturday, September 13, 2008
The Voice of Reason, Part I
My best friend Marie flew in from Chicago last Thursday to watch the kids while Bill and I attended the Narrative Matters conference. On Friday morning, while Marie helped me get ready I made a confession, “Sometimes I think it’s all in my head.”
Other people roll their eyes; Marie rolls her whole body. I’m sure part of this is being Italian-American and, therefore, prone to non-verbal forms of communication. I suspect, however, that it has a great deal more to do with the fact that Marie is the hearing child of deaf parents. Marie grew up learning English and American Sign Language (ASL) and is fluent in both (as well as Spanish). In ASL, signs as well as their location relative to the body convey important meaning, like when an event happened. Any time I have watched people sign I am struck by the amount of facial expression used, far more than seems typical among hearing persons. So I always assumed that Marie’s physically expressive nature related somehow to her ASL fluency and her experiences in the Deaf community.
After I made my confession Marie widened and rolled her eyes while simultaneous rolling her head in a circle and pivoting her shoulders so that her palms faced outward, her fingers spread-eagle. She was exasperated, “Ok, either you’re really sick or the best fucking actress in the world.”
I don’t know why I insist on doubting the veracity of my illness. Perhaps it is the years of clinical training. Whenever we could not identify the source of the patient’s problems or treat them effectively, we assumed that the complaints were psychosomatic and absolved ourselves of any responsibilities. This bothered me as a young nurse. Even without any illness experience of my own, it seemed rather arrogant to assume that the patient was “mental” if the physician could not identify the illness. The underlying premise of this assumption is that modern medicine has no remaining unsolved mysteries. And, as a patient with an illness about which so little is understood, I can assure you that modern medicine has long, long way to go.
Years ago I hated the way families were treated when no explanation for their child’s illness could be found. In some cases providers diagnosed such cases as Munchausen syndrome by proxy, in which an adult caregiver ensures that his or her child will experience some medical affliction and, consequently, causes the child to suffer treatment. While I have no doubt that there were cases worthy of this diagnosis, it always struck me as a little too convenient, a bit of a cop-out.
Perhaps I internalized this “blame it on the patient” tendency a bit. When I reach the top of the stairs out of breath, heart racing I tell myself, “You need to deal with your anxiety.” Or maybe it comes back to control, if it’s psychological, then I can reverse it somehow, “Maybe anti-anxiety medications would help.”
Yesterday I had an exercise test done in the pulmonary function lab that left no doubt that my illness – my difficulties breathing, my rapid heart rate, my activity intolerance – are physical in nature. First I had to do pulmonary function tests. My forced vital capacity, the amount of air I can forcible blow from my lungs, was 26% of the amount predicted for someone my age, gender, and size. In January, the same number was 42%. Then they put me on an exercise bike and hooked me up to an EKG and the pulmonary monitor. As I began to pedal they recorded my physical response. Within two minutes I had “peaked” at 75% of my lung function an 85% of my target heart rate. I lasted 6 minutes on the bike. And, to think, I used to ride 36 miles at a time. It was time to accept that my brain had little control over my disease-ridden, weary body.
On the way home Bill was speeding. “Slow down. The kids are already going to lose one parent; they cannot lose two. You need to drive better.” I told him it was time for us to face to cold, hard truth: the end of my life is drawing near. It is time to make a living will, a will, plan the funeral arrangements, etc. He agreed but I could tell that he is still not willing to raise the white flag. And I need to see his surrender so have his permission to go.
We went to the movies with a friend to see, “Burn After Reading.” As I watched the trailers for the Christmas releases, I wondered if I would be here to see any of those films. The movie was amusing but even my George Clooney crush could not pull me out of my despair. All I really wanted to do was crawl into a ball and cry. Why hasn’t all my anticipatory grief left me more prepared for this? I thought I was already skilled at navigating these waters and that the march toward death would eventually lead me to some sort of sea of tranquility where it was all well. I guess I was just delusional or maybe the tranquility comes when I start getting some nice narcotics. I’m not above drug-induced tranquility. I may have successfully avoided ever taking a single puff on a joint (family history of substance abuse left me petrified of addiction), but I am more than happy to take whatever drugs they will give me at this point. When the 76 year-old mother of a friend went to discuss sleep issues with her doctor, she expressed concern about addition. He handed her the prescription and said, “At your age, go ahead and get addicted.” I think this advice applies in my situation as well; I figure at this point I have little to lose.
Other people roll their eyes; Marie rolls her whole body. I’m sure part of this is being Italian-American and, therefore, prone to non-verbal forms of communication. I suspect, however, that it has a great deal more to do with the fact that Marie is the hearing child of deaf parents. Marie grew up learning English and American Sign Language (ASL) and is fluent in both (as well as Spanish). In ASL, signs as well as their location relative to the body convey important meaning, like when an event happened. Any time I have watched people sign I am struck by the amount of facial expression used, far more than seems typical among hearing persons. So I always assumed that Marie’s physically expressive nature related somehow to her ASL fluency and her experiences in the Deaf community.
After I made my confession Marie widened and rolled her eyes while simultaneous rolling her head in a circle and pivoting her shoulders so that her palms faced outward, her fingers spread-eagle. She was exasperated, “Ok, either you’re really sick or the best fucking actress in the world.”
I don’t know why I insist on doubting the veracity of my illness. Perhaps it is the years of clinical training. Whenever we could not identify the source of the patient’s problems or treat them effectively, we assumed that the complaints were psychosomatic and absolved ourselves of any responsibilities. This bothered me as a young nurse. Even without any illness experience of my own, it seemed rather arrogant to assume that the patient was “mental” if the physician could not identify the illness. The underlying premise of this assumption is that modern medicine has no remaining unsolved mysteries. And, as a patient with an illness about which so little is understood, I can assure you that modern medicine has long, long way to go.
Years ago I hated the way families were treated when no explanation for their child’s illness could be found. In some cases providers diagnosed such cases as Munchausen syndrome by proxy, in which an adult caregiver ensures that his or her child will experience some medical affliction and, consequently, causes the child to suffer treatment. While I have no doubt that there were cases worthy of this diagnosis, it always struck me as a little too convenient, a bit of a cop-out.
Perhaps I internalized this “blame it on the patient” tendency a bit. When I reach the top of the stairs out of breath, heart racing I tell myself, “You need to deal with your anxiety.” Or maybe it comes back to control, if it’s psychological, then I can reverse it somehow, “Maybe anti-anxiety medications would help.”
Yesterday I had an exercise test done in the pulmonary function lab that left no doubt that my illness – my difficulties breathing, my rapid heart rate, my activity intolerance – are physical in nature. First I had to do pulmonary function tests. My forced vital capacity, the amount of air I can forcible blow from my lungs, was 26% of the amount predicted for someone my age, gender, and size. In January, the same number was 42%. Then they put me on an exercise bike and hooked me up to an EKG and the pulmonary monitor. As I began to pedal they recorded my physical response. Within two minutes I had “peaked” at 75% of my lung function an 85% of my target heart rate. I lasted 6 minutes on the bike. And, to think, I used to ride 36 miles at a time. It was time to accept that my brain had little control over my disease-ridden, weary body.
On the way home Bill was speeding. “Slow down. The kids are already going to lose one parent; they cannot lose two. You need to drive better.” I told him it was time for us to face to cold, hard truth: the end of my life is drawing near. It is time to make a living will, a will, plan the funeral arrangements, etc. He agreed but I could tell that he is still not willing to raise the white flag. And I need to see his surrender so have his permission to go.
We went to the movies with a friend to see, “Burn After Reading.” As I watched the trailers for the Christmas releases, I wondered if I would be here to see any of those films. The movie was amusing but even my George Clooney crush could not pull me out of my despair. All I really wanted to do was crawl into a ball and cry. Why hasn’t all my anticipatory grief left me more prepared for this? I thought I was already skilled at navigating these waters and that the march toward death would eventually lead me to some sort of sea of tranquility where it was all well. I guess I was just delusional or maybe the tranquility comes when I start getting some nice narcotics. I’m not above drug-induced tranquility. I may have successfully avoided ever taking a single puff on a joint (family history of substance abuse left me petrified of addiction), but I am more than happy to take whatever drugs they will give me at this point. When the 76 year-old mother of a friend went to discuss sleep issues with her doctor, she expressed concern about addition. He handed her the prescription and said, “At your age, go ahead and get addicted.” I think this advice applies in my situation as well; I figure at this point I have little to lose.
Friday, September 12, 2008
Mother and Child Reunion
I was born on a cold January day just slightly behind schedule. I was due on January 17th but born January 18th at 5:20 am. Ever since I have always been just a little late for everything. At the time I was born, my grandmother was in the final stages of pulmonary sarcoidosis. While my mother cared for me during the early weeks of my life she also nursed her dying mother.
My grandmother died in late March, beginning my mother’s protracted mourning period. In the Italian tradition, my mother wore black for a year. Though she eventually left behind her funeral garb, her mourning never ended. Her mother’s death left a void that could not be filled by anyone or anything.
Throughout my life, my mother always encouraged me and showered me with praise. I was one of those children who was eager to please, and I worked hard at school and home to make my mother happy. I never doubted my mother’s love or admiration, even to this day, but I always felt like a disappointing substitute, an unfair trade. Yes, my mother finally had her coveted daughter on the fourth try but, as I grew, it became clear that I was a carbon copy of my father: a fiercely independent bookworm with a bad case of wanderlust. It eventually became clear that my mother and I would not share the bond that she and her mother once had. Yes, I loved my mother, but I didn’t need her the way she had needed her mother. And my mother needed to be needed.
As I grew older I began to cringe whenever she would bemoan the loss of her mother, “I lost my mother too young.” In my egocentric twenties, her grief just intensified my feelings of inadequacy. No matter what I accomplished in my life, I felt like I would never be an adequate replacement for her mother. Nothing I did could help the child in her that longed for her mother’s love even two decades after her death.
“There is a reason and purpose for everything,” my massage therapist assures me. Sometimes I believe her. When my mother was nursing me through the recovery from my feeding tube we spent nearly two months together. She helped me shower and blow-dried my hair. She changed my bandages and comforted me through my physical pain. We cried together: my spoken fears of leaving my children and her unspoken fears of burying her daughter.
When my mother was here caring for me she spoke again about her mother’s death. “I was so angry with God when I was pregnant with you because my mother didn’t tell me how sick she was until it was too late,” she told me. My mother reasoned that had she not been pregnant, her mother would have told her the truth and things would have played out differently. “And she was so sick after you were born and I couldn’t take care of you because I was taking care of her. ‘Why did you do this God?’ I asked. I prayed that God would make her better but my mother told me, ‘God is not going to answer your prayers. He is going to answer mine. You have your daughter. Mary [my aunt] has her son.’”
God did answer my grandmother’s prayers, leaving my mother heartbroken for the last 40 years. “I loved her so much. I didn’t think I could go on without her. But I had no choice. You were just an infant; you needed me. Because of you I kept going.” All my life I thought I was an inadequate substitute for my grandmother because I didn’t given my mother the type of relationship that she and her mother had shared. I never knew that I had given her a reason to keep living when her heart was so shattered that she wanted to die.
My poor mother, the healthy woman sandwiched between her mother and her daughter both victims of autoimmune disease induced pulmonary disease, seemed to be at the end of her patience with God on her last visit. “I have trusted him for 12 years that you would get better and you aren’t and I am so angry with him,” she admitted. I’m sure she looks into the future and wonders, “How can I bear the doubling of my grief?”
Any unresolved issues that I had with my mother evaporated during the time she spent here nursing me and running my household with love. I realize now that I mistakenly personalized her expressions of grief over losing her mother. Her grief has nothing to do with me and never has. I could never take my grandmother’s place in my mother’s life. Seeing my mother’s grief in a depersonalized way – seeing her as a child who misses her mother – has made me realize that losing your mother hurts at any age. Whether I live another year or another decade, my death will hurt my children. That is the price of maternal devotion, filial affection and the shared bond between a mother and child.
“Will you die?” Amelia asked me one night as we sat together on her bed. She was young, perhaps four. “Yes, everyone dies,” I answered honestly but nonchalantly.
“But then I won’t have a mother.”
Her blue eyes made my heart ache. At the time, she knew I was sick but has no idea of how sick I would eventually become. She had no idea that I was unlikely to see her graduate from high school. The question she was asking was not quite rhetorical but naive; she had no idea how profoundly relevant it was for her. “Well, I won’t be here physically,” I reassured her, “but I will always be in your heart and, besides, life gives you lots of mothers.”
I thought about all the mothers in my life. When my house burnt down in graduate school I moved in with one of my professors and his wife, Jeanette. She literally mothered me through one of the worst moments of my life and became a lifelong friend. My mother didn’t work outside home so as I approached motherhood I found that I had no role model for balancing a career and family life. My dissertation advisor Sally was a wonderful mother to twin girls who were born during the first year of my doctoral studies. In Sally, as well as other female colleagues, I found women from whom I learned to balance family life and career demands successfully. My friend Estelle, a feisty ex-New Yorker who shares my birthday with a 40-year gap in years, and I attend plays and shows together, sharing our love of the arts. And from two elderly friends, Millie and Tina, I learned both the wisdom and hardship that comes with aging and dying.
“You will always have a mother when you need one, just be open to them. You will always have what you need,” I promised.
The answer sat well with her that night five years ago. Much to my surprise I left her room feeling peaceful, knowing that I had laid the foundation for the inevitable. In doing so I not only assured her that she will be ok without me but also gave her permission to allow others to take my place when I am physically gone.
I remind her often that life gives us many mothers. In passing on this belief, I am teaching her that loving me doesn’t demand that she be unhappy when I am gone and that finding substitutes for my love is not a betrayal of our relationship. In comforting her I comfort myself. I take peace imagining her in the loving arms of my friends and relatives and the women who will cross her path in the distant future and mother her for me. And I like to think I am at least somewhat replaceable.
My grandmother died in late March, beginning my mother’s protracted mourning period. In the Italian tradition, my mother wore black for a year. Though she eventually left behind her funeral garb, her mourning never ended. Her mother’s death left a void that could not be filled by anyone or anything.
Throughout my life, my mother always encouraged me and showered me with praise. I was one of those children who was eager to please, and I worked hard at school and home to make my mother happy. I never doubted my mother’s love or admiration, even to this day, but I always felt like a disappointing substitute, an unfair trade. Yes, my mother finally had her coveted daughter on the fourth try but, as I grew, it became clear that I was a carbon copy of my father: a fiercely independent bookworm with a bad case of wanderlust. It eventually became clear that my mother and I would not share the bond that she and her mother once had. Yes, I loved my mother, but I didn’t need her the way she had needed her mother. And my mother needed to be needed.
As I grew older I began to cringe whenever she would bemoan the loss of her mother, “I lost my mother too young.” In my egocentric twenties, her grief just intensified my feelings of inadequacy. No matter what I accomplished in my life, I felt like I would never be an adequate replacement for her mother. Nothing I did could help the child in her that longed for her mother’s love even two decades after her death.
“There is a reason and purpose for everything,” my massage therapist assures me. Sometimes I believe her. When my mother was nursing me through the recovery from my feeding tube we spent nearly two months together. She helped me shower and blow-dried my hair. She changed my bandages and comforted me through my physical pain. We cried together: my spoken fears of leaving my children and her unspoken fears of burying her daughter.
When my mother was here caring for me she spoke again about her mother’s death. “I was so angry with God when I was pregnant with you because my mother didn’t tell me how sick she was until it was too late,” she told me. My mother reasoned that had she not been pregnant, her mother would have told her the truth and things would have played out differently. “And she was so sick after you were born and I couldn’t take care of you because I was taking care of her. ‘Why did you do this God?’ I asked. I prayed that God would make her better but my mother told me, ‘God is not going to answer your prayers. He is going to answer mine. You have your daughter. Mary [my aunt] has her son.’”
God did answer my grandmother’s prayers, leaving my mother heartbroken for the last 40 years. “I loved her so much. I didn’t think I could go on without her. But I had no choice. You were just an infant; you needed me. Because of you I kept going.” All my life I thought I was an inadequate substitute for my grandmother because I didn’t given my mother the type of relationship that she and her mother had shared. I never knew that I had given her a reason to keep living when her heart was so shattered that she wanted to die.
My poor mother, the healthy woman sandwiched between her mother and her daughter both victims of autoimmune disease induced pulmonary disease, seemed to be at the end of her patience with God on her last visit. “I have trusted him for 12 years that you would get better and you aren’t and I am so angry with him,” she admitted. I’m sure she looks into the future and wonders, “How can I bear the doubling of my grief?”
Any unresolved issues that I had with my mother evaporated during the time she spent here nursing me and running my household with love. I realize now that I mistakenly personalized her expressions of grief over losing her mother. Her grief has nothing to do with me and never has. I could never take my grandmother’s place in my mother’s life. Seeing my mother’s grief in a depersonalized way – seeing her as a child who misses her mother – has made me realize that losing your mother hurts at any age. Whether I live another year or another decade, my death will hurt my children. That is the price of maternal devotion, filial affection and the shared bond between a mother and child.
“Will you die?” Amelia asked me one night as we sat together on her bed. She was young, perhaps four. “Yes, everyone dies,” I answered honestly but nonchalantly.
“But then I won’t have a mother.”
Her blue eyes made my heart ache. At the time, she knew I was sick but has no idea of how sick I would eventually become. She had no idea that I was unlikely to see her graduate from high school. The question she was asking was not quite rhetorical but naive; she had no idea how profoundly relevant it was for her. “Well, I won’t be here physically,” I reassured her, “but I will always be in your heart and, besides, life gives you lots of mothers.”
I thought about all the mothers in my life. When my house burnt down in graduate school I moved in with one of my professors and his wife, Jeanette. She literally mothered me through one of the worst moments of my life and became a lifelong friend. My mother didn’t work outside home so as I approached motherhood I found that I had no role model for balancing a career and family life. My dissertation advisor Sally was a wonderful mother to twin girls who were born during the first year of my doctoral studies. In Sally, as well as other female colleagues, I found women from whom I learned to balance family life and career demands successfully. My friend Estelle, a feisty ex-New Yorker who shares my birthday with a 40-year gap in years, and I attend plays and shows together, sharing our love of the arts. And from two elderly friends, Millie and Tina, I learned both the wisdom and hardship that comes with aging and dying.
“You will always have a mother when you need one, just be open to them. You will always have what you need,” I promised.
The answer sat well with her that night five years ago. Much to my surprise I left her room feeling peaceful, knowing that I had laid the foundation for the inevitable. In doing so I not only assured her that she will be ok without me but also gave her permission to allow others to take my place when I am physically gone.
I remind her often that life gives us many mothers. In passing on this belief, I am teaching her that loving me doesn’t demand that she be unhappy when I am gone and that finding substitutes for my love is not a betrayal of our relationship. In comforting her I comfort myself. I take peace imagining her in the loving arms of my friends and relatives and the women who will cross her path in the distant future and mother her for me. And I like to think I am at least somewhat replaceable.
Thursday, September 11, 2008
Update on the Line "Exchange"
It sounds funny doesn't it? Like I'm at the customer service desk at Target, "Excuse me, my central line isn't working. I'd like to exchange it for a new one." Of course, the big difference between hospital care and retail is that the exchange isn't free in health care. The medical bills just keep coming and coming!
For the most part the line exchange went smoothly except for one small detail. Bill and I told everyone -- the nurse who prepared me for the procedure, the charge nurse, the resident who consented me for the procedure, and both nurses in the interventional radiology suite -- that they couldn't use their usual Versed/Fentanyl combo with me because I don't respond to Fentanyl. Fentanyl is a narcotic frequently used for conscious sedation during localized procedures that do not require general anesthesia. We know it doesn't work for me because during one of my feeding tube placements I was given 400 micrograms (A huge dose for someone my size) and still awake and carrying on a conversation. The drug just doesn't touch me.
So we were thorough in spreading the word and the staff assured us that they would use Versed and Dilaudid, which has worked well for me in the past. Once again I was awake for much of the procedure and asking questions. We came to discover in the recovery room that the doctor performing the procedure ordered Fentanyl despite our requests. When I was still awake they just kept giving me more Versed. Finally someone gave me Dilaudid.
When we learned that our request had not been honored, we asked to see the resident. He had impressed me during the informed consent so much that I told him so. He explained the procedure clearly, described the risks and their relative probabilities, and asked if we had any questions. He wrote down the information about the Dilauded and I'm quite sure he passed it along. So, this poor guy, who probably wasn't in the room for the procedure because he's busy doing the "scut" work, had to listen to our frustration. He apologized so nicely that I thought someone should videotape him and make doctors all over the country watch it and learn something.
The attending physician, the guy "in charge," apologized but was not nearly as sincere. "It was my decision to use the Fentanyl because it works so quickly," he explained. So either the message never made it to him, he just ignored the messenger, or he didn't trust my knowledge of my past medical experience and my responses to drugs enough to adjust his standard approach. So much for patient-centered care. I am beyond frustrated with providers who do not listen.
On the upside one of my favorite nurses took care of me. She took care of me the day they put in the first feeding tube and the day they pulled the second one out for good. She is a wonderful nurse and human being; she made it much easier to deal with my frustration by acknowledging my right to those feelings and letting me vent.
I will keep you posted on the heart rhythm. I was still having the premature ventricular contractions in recovery, but then they stopped. Bill listened to my heart when we got home and the rhythm was still normal so I hope this is going to work ...
Thanks for all the positive thoughts, prayers, etc.
For the most part the line exchange went smoothly except for one small detail. Bill and I told everyone -- the nurse who prepared me for the procedure, the charge nurse, the resident who consented me for the procedure, and both nurses in the interventional radiology suite -- that they couldn't use their usual Versed/Fentanyl combo with me because I don't respond to Fentanyl. Fentanyl is a narcotic frequently used for conscious sedation during localized procedures that do not require general anesthesia. We know it doesn't work for me because during one of my feeding tube placements I was given 400 micrograms (A huge dose for someone my size) and still awake and carrying on a conversation. The drug just doesn't touch me.
So we were thorough in spreading the word and the staff assured us that they would use Versed and Dilaudid, which has worked well for me in the past. Once again I was awake for much of the procedure and asking questions. We came to discover in the recovery room that the doctor performing the procedure ordered Fentanyl despite our requests. When I was still awake they just kept giving me more Versed. Finally someone gave me Dilaudid.
When we learned that our request had not been honored, we asked to see the resident. He had impressed me during the informed consent so much that I told him so. He explained the procedure clearly, described the risks and their relative probabilities, and asked if we had any questions. He wrote down the information about the Dilauded and I'm quite sure he passed it along. So, this poor guy, who probably wasn't in the room for the procedure because he's busy doing the "scut" work, had to listen to our frustration. He apologized so nicely that I thought someone should videotape him and make doctors all over the country watch it and learn something.
The attending physician, the guy "in charge," apologized but was not nearly as sincere. "It was my decision to use the Fentanyl because it works so quickly," he explained. So either the message never made it to him, he just ignored the messenger, or he didn't trust my knowledge of my past medical experience and my responses to drugs enough to adjust his standard approach. So much for patient-centered care. I am beyond frustrated with providers who do not listen.
On the upside one of my favorite nurses took care of me. She took care of me the day they put in the first feeding tube and the day they pulled the second one out for good. She is a wonderful nurse and human being; she made it much easier to deal with my frustration by acknowledging my right to those feelings and letting me vent.
I will keep you posted on the heart rhythm. I was still having the premature ventricular contractions in recovery, but then they stopped. Bill listened to my heart when we got home and the rhythm was still normal so I hope this is going to work ...
Thanks for all the positive thoughts, prayers, etc.
Central Line Exchange
Hi everyone,
I may not be able to post much today. I am off to the hospital to have my central line replaced. It is dwelling in a tiny vein as opposed to the subclavian vein. We are hoping the new line might reverse my heart arrhythmia (the electrical conduction of my heart was normal until the line was placed) and, perhaps, the edema.
Prayers, incantations, crossed fingers, positive thoughts, are all welcome. I am an equal opportunity prayer recipient.
Michelle
P.S. Let's all take a moment today to remember those who died in 9/11. Hard to believe it was 7 years ago.
I may not be able to post much today. I am off to the hospital to have my central line replaced. It is dwelling in a tiny vein as opposed to the subclavian vein. We are hoping the new line might reverse my heart arrhythmia (the electrical conduction of my heart was normal until the line was placed) and, perhaps, the edema.
Prayers, incantations, crossed fingers, positive thoughts, are all welcome. I am an equal opportunity prayer recipient.
Michelle
P.S. Let's all take a moment today to remember those who died in 9/11. Hard to believe it was 7 years ago.
Wednesday, September 10, 2008
Welcome
For those of you reading this blog for the first time today after learning about it in Health Affairs, “Welcome.” I thought I’d provide a little blog background today for new visitors.
Why read the diary of a dying young woman, the mother of two small children, someone with a loving marriage, a successful career, and an army of loving friends and family? Why read the story of someone who is about to lose everything, someone who is watching her life slip uncontrollably through her hands like sand from an hourglass that shattered, setting a life on a wholly unpredictable and unfortunate course? Why share that sadness? Why share her hopes, especially those that are eventually dashed? Why eavesdrop on the heart wrenching discussions between this mother and her children when they brave the reality that she is leaving them? Why be a voyeur into a marriage where “in sickness and in health” is not a promise but a daily reality?
I am this dying mother, wife, daughter, friend, sister. I assure you that I am no one special. I am simply a woman facing a premature death and learning, day by day, how to balance hope and reality; how to laugh through my tears; how to find joy despite my shattered heart and my anxious mind. Why read my diary? Because I am just like you. It just so happens that I am currently facing the grim reality of my own mortality forty years ahead of schedule.
After a decade of truly living with scleroderma, I have grown increasingly ill over the past 18 months. As a result of medication side effects and four months of chemotherapy, I lost 19 of my 95 pounds in 13 months. I had a feeding tube placed in hopes it would help me gain back the weight; it created far more problems than it solved and was removed after four months. I am now on total parental nutrition (TPN), which meets all my caloric demands through my blood stream. The TPN will likely extend my life, potentially for years, and hopefully improve my quality of life as well.
The fallout from my medical crisis has been significant. Imagine living a life where death feels just around the corner. For me it has been a physically and mentally bruising battle, one that often made me wish for death because I was so tired of fighting. But then I would look at my kids and step back in the proverbial ring. My husband has the difficult job of managing my health care, being an optimistic cheerleader, and still addressing his own grief. And my children worry that they are losing their mother long before they are ready to let her go.
I know it all sounds very depressing. I can assure you that it is not. Ours is an incredibly rich and sweet life. Yes, we cry often, but we laugh more. We make memories, intentionally, every day. We don’t do it with photos or videos, though we should do a little more of that for posterity’s sake, we do it by being truly present in the moment: by planning a picnic and lying out in the sunshine with bagels and cream cheese, playing Three Bill Goats Gruff under a bridge, blowing bubbles.
I have learned that fighting for your life is hard work but, with an open heart, it brings a multitude of gifts. My family and I learn from this struggle every day, and it has brought us closer than I ever dreamed possible. And we have learned to find humor in absolutely everything.
This blog is a collection of personal essays about my experiences as a somewhat typical parent in the face of a difficult present and an uncertain future. One evening my husband and I were at the kitchen table joking about the idea of making these essays into a book. “Maybe Amazon could bundle it with a six month supply of the antidepressants of the person’s choice,” I suggested and we laughed over our bowls of soup. But, honestly, I don’t think the blog is sad. I think is it a candid, open, and real diary of a life in the balance, peppered with humor without resisting the inherent pathos of the subject.
In this life we all share only two things in common with absolute certainty: birth and death. C.S. Lewis supposedly observed that we “read to know that we are not alone.” My dream and hope is that in this blog I will not only making the sick and the dying feel less alone but also making the living more fully aware of the precious gift they experience every day: to feel the ease of the breath moving in and out of their lungs, to notice the freckles on their children’s faces, to look at their loved ones more intently. And if reading the blog means they waffle between sobbing and laughing out loud, then I accomplished my goal because truly living means feeling everything, all the way.
Why read the diary of a dying young woman, the mother of two small children, someone with a loving marriage, a successful career, and an army of loving friends and family? Why read the story of someone who is about to lose everything, someone who is watching her life slip uncontrollably through her hands like sand from an hourglass that shattered, setting a life on a wholly unpredictable and unfortunate course? Why share that sadness? Why share her hopes, especially those that are eventually dashed? Why eavesdrop on the heart wrenching discussions between this mother and her children when they brave the reality that she is leaving them? Why be a voyeur into a marriage where “in sickness and in health” is not a promise but a daily reality?
I am this dying mother, wife, daughter, friend, sister. I assure you that I am no one special. I am simply a woman facing a premature death and learning, day by day, how to balance hope and reality; how to laugh through my tears; how to find joy despite my shattered heart and my anxious mind. Why read my diary? Because I am just like you. It just so happens that I am currently facing the grim reality of my own mortality forty years ahead of schedule.
After a decade of truly living with scleroderma, I have grown increasingly ill over the past 18 months. As a result of medication side effects and four months of chemotherapy, I lost 19 of my 95 pounds in 13 months. I had a feeding tube placed in hopes it would help me gain back the weight; it created far more problems than it solved and was removed after four months. I am now on total parental nutrition (TPN), which meets all my caloric demands through my blood stream. The TPN will likely extend my life, potentially for years, and hopefully improve my quality of life as well.
The fallout from my medical crisis has been significant. Imagine living a life where death feels just around the corner. For me it has been a physically and mentally bruising battle, one that often made me wish for death because I was so tired of fighting. But then I would look at my kids and step back in the proverbial ring. My husband has the difficult job of managing my health care, being an optimistic cheerleader, and still addressing his own grief. And my children worry that they are losing their mother long before they are ready to let her go.
I know it all sounds very depressing. I can assure you that it is not. Ours is an incredibly rich and sweet life. Yes, we cry often, but we laugh more. We make memories, intentionally, every day. We don’t do it with photos or videos, though we should do a little more of that for posterity’s sake, we do it by being truly present in the moment: by planning a picnic and lying out in the sunshine with bagels and cream cheese, playing Three Bill Goats Gruff under a bridge, blowing bubbles.
I have learned that fighting for your life is hard work but, with an open heart, it brings a multitude of gifts. My family and I learn from this struggle every day, and it has brought us closer than I ever dreamed possible. And we have learned to find humor in absolutely everything.
This blog is a collection of personal essays about my experiences as a somewhat typical parent in the face of a difficult present and an uncertain future. One evening my husband and I were at the kitchen table joking about the idea of making these essays into a book. “Maybe Amazon could bundle it with a six month supply of the antidepressants of the person’s choice,” I suggested and we laughed over our bowls of soup. But, honestly, I don’t think the blog is sad. I think is it a candid, open, and real diary of a life in the balance, peppered with humor without resisting the inherent pathos of the subject.
In this life we all share only two things in common with absolute certainty: birth and death. C.S. Lewis supposedly observed that we “read to know that we are not alone.” My dream and hope is that in this blog I will not only making the sick and the dying feel less alone but also making the living more fully aware of the precious gift they experience every day: to feel the ease of the breath moving in and out of their lungs, to notice the freckles on their children’s faces, to look at their loved ones more intently. And if reading the blog means they waffle between sobbing and laughing out loud, then I accomplished my goal because truly living means feeling everything, all the way.
Tuesday, September 9, 2008
Millie
Like having children, pet ownership opens your world. I had lived in my third-floor apartment for nearly two years when Bill and I brought Watson home. Suddenly, my neighbors and I had something to say beyond “hello.”
Soon after getting Watson I met an elderly woman, Tina, who lived around the corner from me. She had a coarse-haired, Corgi-like dog named Benji. During one of our first meetings, Watson was annoying Benji in the way that puppies always annoy older dogs. Benji, in retaliation, peed on Watson’s head. Watson looked ridiculous: an all white dog with a huge yellow stain between his ears. I guess the event broke the ice rather quickly for Tina and me. Every day while we were waiting for our respective dogs to do their business she and I would chat. I came to enjoy our daily conversations and soon an unlikely friendship bloomed despite the enormous generation gap. And it is a friendship that has lasted over the years and the cross-country moves.
One day another elderly woman from my building stopped me while I was getting my mail. “You are Michelle, aren’t you?” she asked. After I confirmed this she continued, “Tina waxes poetically about you. You must come to dinner.” The woman’s name was Millie. She was a strong-willed, Jewish mother of imposing physical stature. I couldn’t have declined the invitation even if I wanted to.
On the evening of our dinner date I walked two stories down to Millie’s apartment. It was neat and tidy with 60s style furniture and artwork. The lamp bases on either end table were the torsos of naked women. Then and there I knew that Millie was one of a kind.
She served dinner on beautiful plates shaped like maple leaves; they were exquisite. I think she served chicken, but I vividly remember that she served me a roasted baked sweet potato still in its skin. All my life sweet potatoes had gone from can to 2-quart saucepan where they were covered with brown sugar and pancake syrup. I had never eaten an unadorned sweet potato in my life, and it was a revelation. It is still my favorite way to eat them.
Over dinner Millie and I shared our life stories. Of course, she had a lot more to say. She had worked as a nurse for most of her life and was the mother of two children. She and her husband moved to Chapel Hill from Princeton when he retired. He thought Chapel Hill some sort of “Princeton South”; Millie disagreed. Soon after the move, her husband developed multiple myeloma and died a horribly painful death. Millie herself was a breast cancer survivor. Clearly I was eating with a warrior.
Over the next several months our friendship grew. Millie suffered from terrible migraine headaches. Once, when asked by a doctor what she had tried for her migraines, she responded, “Everything but suicide.” During her episodes I would run to the grocery store for her or feed her cats so she didn’t have to get out of bed.
Shortly after we met, Millie was diagnosed with cancer. As I recall, she declined treatment though I may not be completely right about that. She began to fail quickly. One night she was very ill and called me. I ran downstairs and stayed with her. On her bedroom wall there was a mesmerizing photo of a woman standing on a hilltop with her back to the camera and her right arm outstretched. On her gloved right hand sat a magnificent bird of prey. Mille saw me staring at the photo, “It’s my daughter.” She told me how her daughter had try to rehabilitate the bird and set it free but the bird appeared to have some neurological problems and she ultimately had to give it to professional organization. “My daughter says the photo looks like a Tampax advertisement,” she noted dryily.
Eventually Millie’s condition became grave and she entered the inpatient hospice facility north of Chapel Hill. On a rainy morning I drove up to see her. She was groggy from the pain medications but able to have a conversation. She brought up the then-breaking Lewinsky scandal and stated, “ A man is nothing but a penis.” I laughed at her, but I think she was serious. Then she told me a hilarious story about a crush she had as a young nurse. Finally she had the opportunity to work with the object of her affection, a gorgeous doctor. But he seemed to be recoiling from her at every opportunity. It was only much later that she realized that the garlic sandwiches that she brought for lunch every day might have something to do with his revulsion. Apparently garlic can ward off all types of people, not just vampires.
She seemed to drift off to sleep for a while and I stayed by her bed. It was my first experience with death as an adult and I didn’t’ know what to do. Should I leave without saying good-bye? Should I wait until she awoke? I wasn’t sure. But I could see that Millie would soon be gone and I didn’t want to leave without saying good-bye. Eventually she awoke again but I wasn’t looking in her direction at the time. “You’re special,” she said to be softly, “You don’t know it yet, but you are. You are like my daughter. She doesn’t know that she is special either.”
Those words were among the last she spoke to me that day, and they have always remained with me. I don’t think she was just trying to be kind; I think she was trying to tell me something important. And I wonder what she saw that I could not see.
Millie passed away. Her daughter held a memorial service in Millie’s living room. We passed around a medal Millie had won in elementary school engraved with the word "character." We each had our turn to hold the medal and reflect on Millie. When Bill held the medal he posited that it was for being a character. I told the garlic story. It was a wonderful gathering.
In the following days her daughter asked me if there was anything I wanted to remember Millie. Of course, I wanted the plates but her daughter naturally was taking them. So I asked for the naked lady lamps much to Bill’s chagrin. We also took her dryer because we needed one.
The naked lady lamps did not survive the cross-country moves, but the dryer still runs in my laundry room; it is easily over 20 years old. I suppose I am one of those rare people whose only memento of a loved one is a major appliance. But seriously, sometimes I run my hand along the dryer and think of Millie and her words and hope that I am living up to them.
Soon after getting Watson I met an elderly woman, Tina, who lived around the corner from me. She had a coarse-haired, Corgi-like dog named Benji. During one of our first meetings, Watson was annoying Benji in the way that puppies always annoy older dogs. Benji, in retaliation, peed on Watson’s head. Watson looked ridiculous: an all white dog with a huge yellow stain between his ears. I guess the event broke the ice rather quickly for Tina and me. Every day while we were waiting for our respective dogs to do their business she and I would chat. I came to enjoy our daily conversations and soon an unlikely friendship bloomed despite the enormous generation gap. And it is a friendship that has lasted over the years and the cross-country moves.
One day another elderly woman from my building stopped me while I was getting my mail. “You are Michelle, aren’t you?” she asked. After I confirmed this she continued, “Tina waxes poetically about you. You must come to dinner.” The woman’s name was Millie. She was a strong-willed, Jewish mother of imposing physical stature. I couldn’t have declined the invitation even if I wanted to.
On the evening of our dinner date I walked two stories down to Millie’s apartment. It was neat and tidy with 60s style furniture and artwork. The lamp bases on either end table were the torsos of naked women. Then and there I knew that Millie was one of a kind.
She served dinner on beautiful plates shaped like maple leaves; they were exquisite. I think she served chicken, but I vividly remember that she served me a roasted baked sweet potato still in its skin. All my life sweet potatoes had gone from can to 2-quart saucepan where they were covered with brown sugar and pancake syrup. I had never eaten an unadorned sweet potato in my life, and it was a revelation. It is still my favorite way to eat them.
Over dinner Millie and I shared our life stories. Of course, she had a lot more to say. She had worked as a nurse for most of her life and was the mother of two children. She and her husband moved to Chapel Hill from Princeton when he retired. He thought Chapel Hill some sort of “Princeton South”; Millie disagreed. Soon after the move, her husband developed multiple myeloma and died a horribly painful death. Millie herself was a breast cancer survivor. Clearly I was eating with a warrior.
Over the next several months our friendship grew. Millie suffered from terrible migraine headaches. Once, when asked by a doctor what she had tried for her migraines, she responded, “Everything but suicide.” During her episodes I would run to the grocery store for her or feed her cats so she didn’t have to get out of bed.
Shortly after we met, Millie was diagnosed with cancer. As I recall, she declined treatment though I may not be completely right about that. She began to fail quickly. One night she was very ill and called me. I ran downstairs and stayed with her. On her bedroom wall there was a mesmerizing photo of a woman standing on a hilltop with her back to the camera and her right arm outstretched. On her gloved right hand sat a magnificent bird of prey. Mille saw me staring at the photo, “It’s my daughter.” She told me how her daughter had try to rehabilitate the bird and set it free but the bird appeared to have some neurological problems and she ultimately had to give it to professional organization. “My daughter says the photo looks like a Tampax advertisement,” she noted dryily.
Eventually Millie’s condition became grave and she entered the inpatient hospice facility north of Chapel Hill. On a rainy morning I drove up to see her. She was groggy from the pain medications but able to have a conversation. She brought up the then-breaking Lewinsky scandal and stated, “ A man is nothing but a penis.” I laughed at her, but I think she was serious. Then she told me a hilarious story about a crush she had as a young nurse. Finally she had the opportunity to work with the object of her affection, a gorgeous doctor. But he seemed to be recoiling from her at every opportunity. It was only much later that she realized that the garlic sandwiches that she brought for lunch every day might have something to do with his revulsion. Apparently garlic can ward off all types of people, not just vampires.
She seemed to drift off to sleep for a while and I stayed by her bed. It was my first experience with death as an adult and I didn’t’ know what to do. Should I leave without saying good-bye? Should I wait until she awoke? I wasn’t sure. But I could see that Millie would soon be gone and I didn’t want to leave without saying good-bye. Eventually she awoke again but I wasn’t looking in her direction at the time. “You’re special,” she said to be softly, “You don’t know it yet, but you are. You are like my daughter. She doesn’t know that she is special either.”
Those words were among the last she spoke to me that day, and they have always remained with me. I don’t think she was just trying to be kind; I think she was trying to tell me something important. And I wonder what she saw that I could not see.
Millie passed away. Her daughter held a memorial service in Millie’s living room. We passed around a medal Millie had won in elementary school engraved with the word "character." We each had our turn to hold the medal and reflect on Millie. When Bill held the medal he posited that it was for being a character. I told the garlic story. It was a wonderful gathering.
In the following days her daughter asked me if there was anything I wanted to remember Millie. Of course, I wanted the plates but her daughter naturally was taking them. So I asked for the naked lady lamps much to Bill’s chagrin. We also took her dryer because we needed one.
The naked lady lamps did not survive the cross-country moves, but the dryer still runs in my laundry room; it is easily over 20 years old. I suppose I am one of those rare people whose only memento of a loved one is a major appliance. But seriously, sometimes I run my hand along the dryer and think of Millie and her words and hope that I am living up to them.
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