Monday, June 30, 2008


When I was 22, my parents and I took a trip to Charleston together. It was late July and Charleston greeted us with all the beastly heat and humidity that one expects from a low country swamp. Despite the oppressive heat, Charleston wooed me with its antebellum homes, their layered porches jutting from the sides of the houses rather than across the front facades. We were told that property tax was based upon the length of the house facing the street so people cleverly avoid taxation (as they always will) by building their houses at a 90-degree angle from the street. I don’t know if the taxation story is true, but all those balconies are so visually appealing. And each old home seemed to have a lovely, well-tended garden that I could steal a glance of through wrought iron gates.

As if the picturesque homes and gardens were not enough, there was the food. Charleston was where I first discovered that travel was a tremendous opportunity to experience good food. I selected restaurants using a guidebook and we went from one great meal to another for three days. At one restaurant, my father (all 5’ 4” and 150 lbs of him) made so many trips to the buffet for dessert that my mother and I began to cringe in embarrassment.

Looking back, this trip was a pivotal moment in my relationship with my parents. I had been living in North Carolina for one year at this point and developed a strong sense of self. On this trip I was the tour guide, leading them through the city. On my morning jogs I scouted out places for us to explore. And I commandeered the tour guide rather then they. The trip to Charleston is my first memory of being the adult child of my parents. We enjoyed each other’s company in a different way, seizing the opportunity simply to be together. We went to a jazz club and I ordered a drink in their presence for the first time. We walked through the former slave market, the Battery, and Fort Sumter somehow on even footing. I didn’t have that overwhelming need to please them; I could tell I already had.

Of all the cities in the United States, I have probably visited Charleston the most. The reason for this is that my rheumatologist works at the Medical University of South Carolina and he is well worth the five-hour drive from Durham. On each of my visits, I take the opportunity to walk around this beautiful city and admire her many charms. Before each visit, I email my rheumatologist and ask at which of Charleston’s many fine culinary establishments I should indulge my inner gourmet. I’ve enjoyed some of the finest meals of my life in this lovely little city where people take good food seriously.

Bill and I left yesterday around 12:30. The drive was uneventful and easy. Chester was behaving himself, but a little irritable so Bill and I could not engage in the playful banter that usually characterizes our long car rides. It was good to be together sans children despite the self-imposed silence. I worked on Aidan’s scarf, which is taking forever because there are 32 loops per row and my hands aren’t in great shape.

We arrived at the Charleston Marriot and were greeted by the most charming of porters. He must be an astute fellow because he spied the wheelchair in the trunk and immediately came to help me out of the car (I can get out fine but it was so sweet of him to be so caring and solicitous). He was a poster child for hospitality in every way.

When I entered the lobby I was struck by the décor. Jewel-toned furniture, fabrics, and paintings filled the lobby. I wondered if the world always looked this way but I just notice it more now? Is it the illness? Is it my limited ability to speak that has caused me to be a greater observer? I’m not sure. All I know is that I looked around that lobby and wanted the name of the interior decorator.

We checked in and went to our room. Again, I was struck by the color scheme: coral, butter yellow, and aquamarine. Anyone who has been to my house knows how “at home” I would feel surrounded by these shades. We rested briefly and then dressed for dinner.

I had made reservations at a restaurant, Slightly North of Broad, that I went to alone on a previous trip. One the prior visit I ate a duck confit that I still remember vividly. After we sat down Bill said, “I have eaten here before.” “No,” I said, “I was alone when I came here.” He thought for a moment and then remembered that he had been taken there after giving a lecture at the medical school. We remarked on the fact that it was funny that we had both eaten there alone and, almost accidently, were now eating there together.

I wanted the crab cakes but they contain dairy so I ended up with the duck. I love duck, but every time I eat it I think about my poor father. He and his siblings had a pet duck as children. During a particularly poor period, his father killed the duck and served it for dinner. Can you imagine the ensuing trauma? I still eat duck despite this family history; I just feel a twinge of guilt about it. Bill, being the good Mid-western boy that he is, ordered beef tenderloin.

Our meals arrived. My plate was decoratively arranged with the duck breast sliced across the right side, the leg confit perched between 12 and 2 o’clock, the 6-7 spears of asparagus down the middle and a mound of sautéed spinach in the lower left corner. I proceed to cut everything into small bites, feeling like Teri Garr in Mr. Mom. I have to eat very small bites to avoid aggravating Chester. I ate a bit of duck … Mmm, marvelous. Then a bite of asparagus, which is usually my favorite vegetable; it was ok, but a little too woody. Then I tried the spinach and swooned, “Oh my god, what did they do to this spinach?” It was beyond inspired. I could see the garlic and taste the olive oil but surely there was something else. I had never had such amazing spinach in all my life. When the waitress came to check on us I asked, “How do they make the spinach?” I need to know the secret ingredient. balsamic vinegar? Worshestire sauce? What was it? “It’s just garlic,” she assured me, “and the spinach is locally grown.” “She lies,” I thought to myself as she walked away.

As I ate the meal I fluctuated between the duck and the spinach: which was more worthy of consumption? I wasn’t sure I could finish both. The spinach won out and I consumed it with complete abandon. How I have missed vegetables over these months of trying to gain weight! I also ate all the duck breast and relished every morsel. The asparagus was left behind on the plate along with the duck leg. I looked at my plate victoriously, not bad.

We passed on dessert and returned to the hotel. We found “Wedding Crashers” on TBS and snuggled in bed. It is one of my all time favorite comedies. It would rank up there with “Some Like it Hot” if the whole Will Ferrell character had been edited out. (Nothing against Will Ferrell. I thought he captured childlike innocence marvelously in Elf, but the Chazz character in “Wedding Crashers” is almost a completely unnecessary non-sequitur).

Bill had a bad cold so after the movie we headed off to sleep on separate sides of an enormous king sized bed. I slept amazingly well and woke this morning feeling a little scared but mostly hopeful.

It seems apropos that I embark on this new journey here in Charleston where 17 years ago I became the “adult child” of my parents, a new Michelle to them and to me. And I find myself here again, on the brink of becoming another Michelle who is willing to take on a new challenge to continue to live, as Mary Oliver said so beautifully in her poem The Summer Day, my “one wild and precious life.”

Sunday, June 29, 2008

Offer It Up

When I was sick as a small child, my mother would tell me to offer up my suffering for others. Sometimes she was specific, suggesting that I offer it up for the souls in purgatory. For the uninitiated, purgatory is like a holding cell for heaven where those whose lives did not merit being sentenced to spending eternity in hell spend some period of time before earning a place in heaven. I think it's akin to an extended time out where God sends you somewhere to "think about what you did." The nuns and teachers that guided me through my school-age years reinforced this notion of offering up one's suffering during my 12 years of daily religion classes.

When a friend of mine was studying to become and Episcopal priest, I mentioned my affection for the idea of "offering it up." She had never heard of the idea before and was intrigued by the notion. As we spoke I realized how much I had embraced this ideology a a child and carried into into adulthood.

I am not aware of the underlying rationale for this teaching. Perhaps the idea is that there is some finite amount of suffering in the world and that, by enduring your suffering, you reduce some else's burden. Or, maybe, it is simply posing the idea that suffering can be a form of prayer. I cannot decide which of these rationales I prefer. Why would there be a finite amount of suffering in the world? If there's a God, the notion that he imposes a defined about of suffering paints a pretty sadistic picture of him. It also raises the natural question of why suffering is so unevenly distributed. But I find the idea that my suffering reduces some else's through some unseen cosmic exchange system appealing. Then again, the idea of suffering as prayer is also appealing because it makes it a meditative experience.

Bill is like most men: he is not wired to bear pain. I honestly believe that women are biologically programmed to endure pain. How else would we cope with menstruation, pregnancy, and childbirth? Early in my illness I decided to "offer it up" and tried to keep my spoken complaints to a minimum. I reasoned that speaking about my symptoms would not make them go away and complaining about them would make my company a rather unpleasant experience. But when Bill would complain about stubbing his toe or some or minor malady I would get a little irritated, "Just offer it up. Stop complaining. Offer it up for someone worse off. Christ, offer it up for me."

This morning I awoke to my achy muscles. I turned onto my stomach and reached for my sleeping husband's hand. As I lay there I thought about all the starving people around the world. All over the globe people wake every day feeling like I do: hungry, achy, and weak. I thought about the mothers who have to watch their children starve while they stand by helplessly. Unlike them, I have recourse. I have food. I have the possibility that TPN will save my life. So, once again, I found myself offering my suffering up.

How ironic that I sit here in suburban America, in a 3000 square foot home, typing on an expensive laptop computer, slowly starving to death. How strange that I have a kinship with the world's poor. I have always had sympathy for the impoverished, I have been to Africa and I did home health nursing in the poorest neighborhoods in Philadelphia, but I never dreamed I'd have empathy for them. I still do not know what it is to be poor but I now know what it is to be truly hungry and unable to give my body what it needs.

Last week we received a fundraising letter from the NC Food Bank. We usually donate to them around Thanksgiving because it seems appropriate to give at that time of year. But I responded to this letter with a larger check than usual and with much greater mindfulness that here in Durham there are people starving. They do not have my full refrigerator or overstocked pantry. And they probably do not have the glimmer of hope that I have today.

We leave for Charleston in a couple of hours. It is a 5 hour drive and an opportunity for Bill and me to enjoy each other's company. I plan to bring Aidan's scarf to finish en route. And I will spend the drive hoping that the TPN will work and make me well enough to live a longer and more fulfilling life.

If you pray, please keep me in your intentions this week. If you do not pray, please send me your positive thoughts.

With love in cyperspace,

Saturday, June 28, 2008

Notting Hill

I am not a huge movie person. While I enjoy movies, I never seem to watch them. Bill’s and my movie preferences have limited overlap and, consequently, cinema trips have not figured prominently in our relationship. These days I cannot manage to stay awake long enough to watch a movie after we put the kids to sleep so we have become Netlflix’ favorite costumers because we rent about 6 movies a year despite paying for 4 a month. For the most part, the only movies I see are the movies we rent for our Friday Family Movie Night. Fortunately there are many kids movies that are well worth the viewing either because they are touching, such as Because of Winn Dixie or Shiloh, or because they have a double layer of humor: one that appeals to kids and one that appeals to adults, like the Incredibles. In contrast, some kid movies are actually painful to watch (e.g., the Spy Kid films, even a hottie like Antonio Banderas cannot redeem those films). And when you have a weekly movie ritual involving kids, you cannot avoid seeing some of the awful ones.

Today while I was driving the kids to camp, the movie Notting Hill popped into my brain for no discernable reason. I remember it being a very sweet film, with Hugh Grant in his usual character, the goofy roommate, the lovely montage that shows Hugh Grant’s character walking through the market in different seasons to depict the passage of time, and the happy ending of Grant on a park bench, Julia Robert’s head in his lap and his hand draped lovingly across her pregnant belly.

But the line that immediately sprang to my mind was this, “I'm just a girl, standing in front of a boy, asking him to love her.” The line could have come across as groveling but Roberts delivered it with such sincerity and honesty that it has always remained with me as a beautiful depiction of the vulnerability that love requires.

Today I parsed out the line, “I'm just a girl, standing in front of a boy, asking him to love her.” What she was saying is this is who I am, this is where I am, and this is what I want. I chose to say want here because I think that, in this life, almost everything is a desire instead of a necessity. But I admit that I can be overly nit-picky about words and it’s all just semantics.

When I consider the line this way, “this is who I am, this is where I am, and this is what I want,” I realize how amazingly powerful the line really is. How often to we say things in this way to anyone, including ourselves?

“This is who I am.” How often can we admit who we are, right now, not who were and not who we want to be? How often do we accept ourselves “as is” and expect others to do the same? I have to struggle with this daily because I simply cannot be the Michelle I was even six months ago. My goal now is to make peace with the Michelle that I currently am and accept that she is enough.

“This is where I am.” Do any of us really appreciate where we are – literally and figuratively – in our lives? We are a nation that values striving, and to great benefit, but there is value in recognizing and appreciating the here and now. Sometimes, when I feel overwhelmed by my thoughts of the future, I purposely feel my toes against the floor and my back against the chair to remind myself of where I am physically. Last week, watching the kids in their camp performance I began to ruminate about every future performance that I will miss and I had to remind myself, “You are here now.”

“This is what I want.” It’s amazing how little consideration we give to what we really want. There are so many other voices in our heads – all our perceptions of the expectations and judgments of others – that we cannot hear our own voice. What is it that we really want? It took me a very long time to figure out that I actually controlled the huge majority of all those other voices in my head. When I first decided to work part-time after having Amelia, I thought my mentors would judge me but very few thought anything of my decision. I actually think most people are so busy with their own life issues that they really aren’t watching us as much as we seem to think they are. We never really make it much beyond that developmental stage where we think the world revolves around us.

Even when we know what we want, we are afraid to ask for it. I have finally mastered this in the last few months, and I am amazed by what you can get just for asking.

A friend of mine had a very sick newborn in the intensive care unit recently. I wanted to do something for her, but in my fragile condition, I cannot do much for anyone. Then I thought about an article I read some years ago about a photographer in Chicago who volunteers to photograph sick and dying newborns. If Bill helped me get to the NICU, I could take the photos of the baby.

I knew this seriously ill baby would have tubes coming out of his nose, mouth and chest. I wanted to be able to capture his innocence without the visual reminders of the medical situation. To do so, I would need to focus on ears, toes, hands, and other small parts. But with my current stash of lens, I cannot focus at close range; I needed a macro lens. So I went to the camera store and I told them the story, “I don’t want to buy the lens. I just want to take pictures of this very sick baby and bring the lens back.” Without any hesitation, the manager agreed to my proposal. Now a mother has pictures of her sick baby. “Ask and ye shall receive.”

So in the car this morning I asked myself “Who are you? Where are you? And what do you want?” I prayed to God (I pray a lot for someone with a mustard seed of faith) and said, “I know I am just one person in a world of billions, but I am a very sick mother who is not finished living yet. I would like just a little more time. It doesn’t have to be a decade; I just want some more time to finish everything I want to do. I am doing your work. Please let me finish.”
We cannot control the answers, but we can control the requests. The request merely requires us to be fully aware of ourselves, our place in the world, and our desires.

Thursday, June 26, 2008


I usually do not eat chocolate; it aggravates Chester (my cough, for those of you just tuning into this program). Yesterday I was on my way to pick the kids up from camp. I had enough time to stop and get them bagels. Bagel lunches were a sacred ritual with us for a long time. When they were small we went out for bagel lunches on my day off from work and we went to bagels as a family after church on Sundays. We fell away from the ritual but I now find that nostalgia rules my behavior. So, I stopped off and ordered a cinnamon raisin bagel for Amelia, one plain and one cinnamon sugar for Aidan (I didn't know which he'd want and he can be very particular), and a veggie sandwich for me. Even though I wasn't sure I could eat it, I had to get it because it is my "usual."

While I was paying I noticed small Lake Champlain chocolates at the register. They were calling to me from their little foil wrappers. I love chocolate, dark chocolate, expensive dark chocolate. I read the ingredient list on the dark chocolate and noticed that it contained no milk products. Did I dare? I already had one coughing fit that morning but I wanted that chocolate so much; it's been months since I tasted chocolate.

I bought one. I got in the car and had a talk with Chester, "Chester, if you could let me have this one little piece of chocolate I promise I will not abuse the privalege. I just want this one." I greedily unwrapped the chocolate. I took one small bite: al dente just as I like my chocolate. The chocolate was smooth and sweet and just the right about of bitter. It melted in my mouth. I had another bite. It was so good; it was almost a religious experience. And then the last bite. I was in heaven. Three bites haven't made me that happy in a very long time.

I thanked Chester for his cooperation. Perhaps that evening's retching was payback but it was worth it.

I was thinking last night about a book I read on meditation. It recommended eating a raisin to learn the practice of being in the moment. I have nothing against raisins but why waste this experience on a raisin? I mean they have wrinkles and they are sweet but c'mon. If you are going to have a mindful eating experience nothing can compete with chocolate.

Last summer when I met my present pulmonologist for the first time, we spoke frankly about my future and whether I was going to ultimately need a lung transplant (it turns out that I am not a candidate because I have scleroderma and a very messed up esophagus). At the time he happened to mention that patients routinely get feeding tubes at least temporarily after the transplant. "I won't be able to eat?" I exclaimed, "then you might as well kill me."

Food has been central to my entire adult life. Whenever I traveled, my vacations revolved around food: when we were going to eat where were we going to eat, &, most importantly, what were we going to eat. When we were in Rome last summer I insisted that we find a particular pizzeria in the Campo di Fiori that, according to the the Lonely Planet guide, served amazing pizza. When we found the place we discovered that there was nowhere to sit. My traveling companions balked at the idea of standing in the blazing midday heat to eat their lunch. As we walked past the pizza place, I could see the workers cranking out some serious pies and I felt really disappointed. One gander at the pricey menu of the neighboring restaurant provided just the ammunition I needed to convert the gang to my way of thinking. Back to the pizza place where one ordered pie by the length (they were large rectangluar pies). Not knowing the metric system, I simply held my hands wide to show them how big a piece I wanted. The pizza was not the typical Roma variety, which has a cracker thin crust, but a more neopolitan style. I knew when the server folded my piece in half that I was in for a treat. For less than 11 euros we had meals (plus another 6 for beverages).

We tried to find a shady spot on the campo but the only one was occupied by a middle age couple in serious need of a room for their recreational activities. I honestly have never seen an older couple grope each other that much (actually he was groping her while she seemed pretty engrossed in some paperwork she was doing). The Campo di Fiori is also the site of an open air market so we stood under the umbrella of one of the stalls. It was a huge stall and we were taking up maybe 2 square feet, but of course the little strega (witch) running the stall kept griping at us. So we just pretended we didn’t understand her. The pizza (tomato pie in my case) was the best I have ever eaten. I was literally moaning in the street while I was eating it. I couldn't stop thinking about it, and for weeks afterwards I seriously considered going back to Rome just to eat the pizza again.

This story is a fine example of how much I loved food. Food was everything to me or, at least, I thought it was. But now I find I can live without it if that's what it takes. I can still eat on the TPN but these days it seems like my body just needs a break from food altogether. I hope it won't always be that way. Of the seven cardinal sins, gluttony is far and away my favorite and I'd really like to indulge myself in a little bit more of that someday.

The Boxer

In March, when the battle for my life was reaching a new level, my friend Sally sent me a heartfelt and much needed letter. Sally was my dissertation advisor and is now a dear and trusted friend. In the letter she quoted Simon and Garfunkel:

In the clearing stands a boxer, and a fighter by his trade
And he carries the reminders of every glove that laid him down or cut him ‘til he cried out in his anger and his shame
I am leaving, I am leaving, but the fighter still remains
Yes he still remains

Over the difficult weeks this spring, I often returned to those words in my mind and found in them the strength to keep going.

On Monday I weighed 76.5 pounds despite eating as much as I could tolerate over the last several weeks. I am likely 10 pounds from developing life-threatening heart problems; if I choose to do nothing, I will likely die within a few months. For the past several mornings I have woken up achy all over. This morning, when I awoke at 5 am, I snuggled close to Bill, “Honey, I keep waking up sore all over. Is that the malnutrition?” “Yes,” he answered, “your body is breaking down muscle just like after you exercise except that it can’t rebuild it in your case.” “I’m so scared,” I cried, fearing that we had waited too long to intervene. Bill assured me that we had not waited too long, that there was still time to save my life. “I’m so hungry,” I whispered. And he dragged his poor tired self out of bed and brought me some Jello.

Returning to enternal feeds, i.e., those that use my gastrointestinal system, is unlikely to work. So I am left with one option: total parental nutrition (TPN). With TPN, the gastrointestinal system is bypassed altogether. Instead, doctors insert a central venous catheter, like a semi-permanent intravenous line into one of the large veins near your heart. Then all your daily caloric needs are infused via this line. At first the infusion takes 24 hours, but over a period of time, the solution is made more concentrated and the goal is to have it take 10-14 hours a day, allowing a relatively “normal” life.

We found a physician in Charleston who specializes in this type of feeding. He is incredibly responsive, understanding, and oriented towards maximizing my quality of life. These are three essential qualities in any physician. We travel to Charleston Sunday night and will see him Monday afternoon. Thankfully, he is willing to oversee the TPN as an outpatient process rather than admitting me to the hospital for 5 days. He will perform his assessment and based on that and my labs, manage my TPN long-distance. Bill and I will return home Monday night. Tuesday afternoon I will have the central venous catheter placed at Duke, and begin feedings soon thereafter. While Bill and I are learning to deal with this new development in our lives, our friends Dori and John are taking the kids with them to the beach. This is truly friendship above and beyond the call of duty!

I spoke to a fellow scleroderma patient last week who did TPN for 10 years and assured me that she enjoyed a very full life while doing so. I have read about people doing it longer. I hope it will give me a higher quality of life than I have now by providing for my nutritional needs, which appear to be too high for me to meet with my own intake.

Nontheless, this is a huge step and not without its risks. I told Bill a story this morning of a little girl that I cared for when I was a young nurse. She was a beautiful four-year with big blue eyes and black hair, like a prototype for a young Snow White. A former premature baby, she had developed a condition called necrotizing enterocolitis and had to have much of her bowel removed. Her remaining gastrointestinal system could not process food so she was dependent on TPN for life. When I cared for her she had been hospitalized for a severe infection that caused her skin to slough off. It was horrendous. This is my image of TPN. “That is not going to happen to you,” Bill assured me. But how do we know that? Sometimes I wish I were ignorant. It would be easier to go forward without being so frightened.

So I find myself getting in the ring again when I didn’t think I would or could. Inside I am trembling but not enough to contain my desire to continue my fight.

When I was in graduate school I boasted to my friend, Chris, that I had never seen a Rocky movie. He stared at me in shock, “How can someone from Philly have never seen a Rocky movie? How is that possible?” I was too young to see the first in the series when it was in theaters and, when I got older, it got to be a point of pride that I had never seen one. “But the first one is a wonderful movie; it’s an incredibly sweet story,” he prodded. These words, coming from the least sentimental person I knew, started me wondering if I had missed something. Soon thereafter Chris rented the movie and we watched it together. And I bawled my eyes out.

I am a sentimental person and I truly love Philadelphia, although I could never live there now for a variety of reasons. Seeing my hometown depicted so lovingly on screen was a joy for me. But what really tugged at my heart was Rocky. I loved everything about his character: his accent; his tenacity; the way he waffled between confidence and self-doubt; the honest, open way he pursued Adrian; his courage; the way he exceeded his own expectations; his wisdom that winning truly isn’t everything, and the fact that in the end, when the crowds are clamoring for his attention, he reaches out for the most important thing of all, Adrian.

The movie has returned to my mind so often in the past several days. “Cut me!” Balboa demanded of Mickey so that he could battle to the end. And I suppose that’s what I will do if that is what it takes to go to the final round. But I have to do so knowing that the victory lies not in beating my opponent, a disease I cannot hope to assail, but in giving it everything I had before stepping out of the ring one last time.

Cause I was thinkin', it really don't matter if I lose this fight. It really don't matter if this guy opens my head, either. 'Cause all I wanna do is go the distance.

This is the only way an Italian-American girl, the only girl in a family of rough-and-tumble boys, from the working class streets of Philly knows how to do things: by going the distance. And whether scleroderma wins the battle for my body or not it will never win the battle for my spirit. I will go down swinging because it is the only way I know how to live: to give it everything I’ve got. I hope the TPN works, but if it does not I will know that I did everything in my power to live. I will have my clear conscience and my own permission to go.

The day after my feeding tube was pulled, my friend Amy (apparently a very old soul because she says many blog-worthy things) told me that she thinks my spirit just got too big for my body to contain and the only way for it to survive is to let my body go. I love the image of my body falling away and my spirit soaring and flowing anywhere and everywhere it needs to be.

Wednesday, June 25, 2008


Last Thursday morning I had a significant coughing fit in front of Marie. It quickly became apparent that this fit was going to be of the half-hour variety. Before long I was on my hands and knees against the hardwood floors of my kitchen. Marie laid a towel on the floor and wiped my mouth with tissues. Inside I felt embarrassed by her need to care for me in this way, but she showed not even the slightest revulsion. Sweat beaded along my brow and the back of my neck. My chest heaved with every breath, every cough. My efforts to calm the physical storm through deep breathing and relaxation fell flat. I fell victim once again to my body’s malfunctions and could merely endure until the episode reached its natural end.

My body spent and my hair soaked, I rolled over onto my side on the kitchen floor. I felt each bony prominence against the wood. Marie lay next to me. Soon I felt the plink, plink of her tears against my right ear and cheek, “How often does this happen when you are alone?” she asked. “Once or twice a day,” I replied. “Oh, baby,” she cooed sympathetically and stroked my damp hair.

I have been coughing for 8 years, but the severity has increased exponentially over the last 18 months. We have tried every cough medicine – narcotic and non-narcotic – under the sun to no avail. In fact, it was efforts to control the cough that resulted in the first 10 lb weight loss when I went on Reglan last May. I started biofeedback in hopes of gaining some control over the cough, which I can manage to do at times. I even named my cough at the suggestion of my biofeedback therapist. When she asked me for a name, “Chester” immediately came to mind because I thought of “Chester the Molester.” That’s what the cough, and the constant urge to cough, feels like: a chronic violation. It didn’t dawn on me until later that “Chester” was also an anatomically appropriate name. So sometimes I talk to my cough, “Chester, not now” or “Chester, what’s wrong? What are you trying to tell me?” I try to think of Chester as a friend – an inner physician -- a part of me that is trying to tell me something is amiss. But Chester either is not getting his message across or just doesn’t know when to give up because he can be really relentless.

For the members of my immediate family, the cough has become a “normal” part of our lives. The children preface most sentences with “Can you talk?” because they know I often cannot. They often sing their own lullabies while I stroke their backs. Everyone is well versed in assembling the arsenal needed to deal with Chester’s full-on attack: towels, tissues, an ice-cold washcloth, and water.

In high school Marie never cried. Given that she is a fellow Italian-American I found this perplexing. Crying was my job and one at which I excelled. During those teen years I listened to Lionel Richie songs just to have a good cry, even when I wasn’t sad about anything. It’s the Italian genes; we are a people with an inexplicable and profound need to emote. Marie was the comforter; she still is. Experiencing Marie’s reaction to my cough made me realize how awful it really is. I always tell myself that I am not in pain so I should be able to cope with it. But Chester is always there in full-force or lurking beneath the surface, a constant irritation in my throat threatening to interrupt a sentence, a meal, a cuddle, an outing. Yesterday I spent 20 minutes in the parking lot at REI, where I went to buy some of Aidan’s future birthday gifts, coughing uncontrollably and praying not to vomit all over. When Chester brings me to my knees, retching and perspiring, I sometimes wish it would just end and be done: once and for all. And other times I tell myself, “It’s only really horrible for a half-hour or two a day. You can do that. You can keep doing that.”

Feeling Marie’s tears against my face and her body cradling mine in the wake of my coughing fit, I knew the depth of her sadness. I didn’t need her words to tell me how she felt; I could feel her grief. “When I see you suffer like this I can let you go,” she whispered, giving me a little of the permission I will ultimately need when I decide to let go.

Over the last several weeks several people, and most especially fellow mothers of young children, have given me permission to go. Perhaps it sounds strange to need this from others at this point. After all, only I can decide if my joys outweigh my sorrows enough to bear my suffering, but I crave the permission to go when the scales tip irrevocably in favor of sorrow. And, over the past few months, several friends have come forward to tell me that I have done my job and that I can go with a clear conscience. My devoutly Catholic friend Jennifer, herself a mother of four, wrote to me that God will greet me with “Well done, my good and faithful servant” whenever I chose to stop my battle. Her words made me smile and cry simultaneously because I consider her a mother who would endure anything for her children, and if she can give me permission then it must be warranted.

When you really love someone, you cannot bear to see their endless suffering. As my friend Amy said, “I love you too much to watch you suffer this way. And if you being free of your suffering makes me a little sad, I am happy to carry that pain for you.”

For Bill, Amelia and Aidan giving such permission comes at high personal cost. It will not be an even trade for their permission for me to go leaves them with a lifetime of suffering of their own. Bill will give me permission when he knows we gave it everything we had. Perhaps this is the greatest of marital disputes and we continue to struggle with it. Amelia and Aidan may never be able to give me permission. They are too young to truly appreciate my suffering. They still see Mommy sitting on the bed “dancing” with her arms while they and their Daddy dance across the floor. Their current Mommy seems to be enough for them. And, for now, she is enough for me. From them permission may come in the form of hindsight, decades later when they finally understand how hard I fought to remain with them. In the end I hope they will come to understand and believe that when I chose to go, I did so because I felt that it was the most loving thing I could do: to set them, their father, and myself free.

On Monday morning, the day Marie and Sue left, I lay on the sofa with my head in Sue’s lap. As I cried, she rubbed my back. I thought about the “gateway theory of pain” that postures that the signal from the site of the pain can be interrupted before it reaches the central nervous system and, consequently, prevent the perception of the pain. As Sue rubbed my back, over the ribs and shoulder blades encasing my heart and lungs, my emotional pain eased a little. Perhaps this is why mothers so naturally rub their children’s boo-boos away. “When your mother died,” I asked wary of raising sad memories, “was she peaceful?” Without the slightest pause Sue responded, “Yes, very.” I didn’t ask if she and her father had given her mother, Anne, permission to go. Of course, Anne was quite a character and never really needed anyone’s permission to do anything. But I wonder if she too needed her family to let her go so that she could depart this world just as Sue said, very peacefully.

Monday, June 23, 2008


Three years ago Amelia received a guinea pig as a birthday present. Initially she doted on the little white hairball with the love and attention of a new mother. The guinea pig already had a name from its previous owner and Amelia, completely unperturbed by the denial of this most rewarding of maternal duties, reasoned that we should keep the same name lest the pig be confused. She wrapped her in a blanket and cuddled with her daily, feeding her fresh carrots and celery. On summer evenings Amelia put the pig in a blue and pink checkered doll stroller and took her on walks around the neighborhood. She bathed her and groomed her long white hair. (Just an FYI, if you are in the market for a small rodent, I recommend one with short fur. I won't get graphic with my explanation, just trust me).

Predictably, the novelty of the pig wore off. These days the poor creature sits in a cage day in and day out. Thankfully she can squeak when she needs food or water because Amelia wouldn't notice her death until long after rigor mortis had set in. Actually, I am being a little unfair, Amelia has reformed her wicked ways after much browbeating and feeds Princess every morning. Nonetheless, Princess gets little more than food and I think she has a sorry existence.

Today Amelia was cleaning Princess' cage and I suggested that she put her outside so she could nibble on the grass. I made sure that Zara, our puppy (long story short: Do NOT get a second dog while on chemotherapy for a life threatening illness. On this one particular issue, your husband is right. Again, trust me. If you learn nothing else but this and not buying a long haired rodent, your time on my blog will be well worth it unless, of course, you already knew these things.) was securely in the house and went outside to sit with the pig. When I arrived next to her, she immediately ceased nibbling and looked in my direction. Three years in my house and she still hasn't the foggiest notion who I am. When she decided that I was not going to harm her, she returned to her feast.

I sat down next to her, "So, you're out of your cage too." This is what my life has become: I now empathize with rodents. For a short while I marveled at her ability to masticate; guinea pigs must hold the record for the most chews per minute. At the rate she was going I thought she might be capable of mowing the lawn if we just let her out often enough. I looked at her little head, "What a small brain," I thought. It must be nice to only have enough cerebral capacity to deal with eating, reproduction, and self-preservation. There I sat with my big mammalian brain, constantly churning all the possible choices and outcomes over and over. And with that same brain we have developed so many blessed curses: the gift and pain of memory, the benefits and costs of foresight, and the pleasure and pain of love.

So who was better off, Princess or me? As the cliche goes, "Ignorance is bliss" but it must be very boring. I'll keep my big mammalian brain despite its flaws.

As I was pondering and Princess was nibbling, Zara came out the back door and rushed over to the tasty little morsel by my side. Princess let out a loud sqeak and jumped to nowhere in particular. "No, Zara," I warned, "Be gentle." I scooped Princess into my lap where she continued to squeak. Soon Zara put her snout against Princess' nose and Princess stopped squeaking, "Is that really the only defenses you've got?" I thought. "I am definitely better of with the big brain." But maybe not, maybe I'm just squeaking in the face of the inevitable too and hoping that someone will finally rescue me. Perhaps Princess and I are not so different. But I bet her heart doesn't ache like mine.


Warning: This is looong!

I am not sure what exactly it was that drew Marie, Sue and I together. Sue was my assigned locker partner during my freshman year of high school by virtue of alphabetical order. We were very well paired in this sense because I was short and she was tall; this minimized discussions about who got which shelf and, thankfully, gave me someone to grab things for me. I suppose Sue and I differed in many ways. She looked like an Irish Coleen with her blond hair and freckles and I looked like a typical American mutt favoring the Italian side. Sue was quiet and reserved; I never shut up. (Even now, when the spoken word is so difficult, I insist on writing a daily blog so that I can still impose my thoughts on people!) Sue was an only child and I was the fourth of five. On the surface, we had nothing in common. Marie and I shared a lot in common except that she was like me times 5: she talked more, laughed harder, pulled nuttier stunts, etc.

I always have this image of Sue, Marie and I as a set of scales: Sue on one side, Marie on the other, and me in the middle. I don’t say this because I perceive myself as the fulcrum or steadying force. It just seemed that whatever continuum you chose: Sue was on one end, Marie on the other and I was somewhere in the middle. We were like our on little normal bell curve.

As an adult I have often wondered what it was that kept us together over the last 26 years. Our three-way friendship occurred during that essential time in life when our hearts are so wide-open and unjaded. We hadn’t learned to hold our cards close to our chest so we were fully ourselves with each other. While we were all very bright women and I sometimes resented their superior academic prowess, we never fell into competitive patterns. Instead we cheered each other’s achievements and, in doing so, likely propelled each other forward. It also helped that we had completely different taste in boys, which eliminated any chance of a man coming between the three of us. And we each loved to laugh with no topic, no person being unworthy of a witty remark or jab.

But what I really think drew us together and kept us together is that we found in each other the sisters that family had failed to provide.

It was whirlwind weekend of emotion here. Sue joined Marie and I on Thursday just as I was boarding the emotional rollercoaster. I spent Thursday slipping towards high anxiety and by Friday night I was in fetal position. Bill was out for the night, taking advantage of my girls’ weekend to enjoy time with a friend and some male bonding at the 9:00 showing of “Ironman.” If Bill had known how badly I was feeling prior to his departure he would cancel his plans so I tried to hold it together as long as possible. As soon as he left I started to come unglued. Marie and Sue held me close as I bawled my eyes out. But part of me could not understand what was happening. I had felt fine Sunday through Wednesday, joking and laughing with Marie, running errands, and preparing for Amelia’s party. Then Thursday I could feel myself going under as if I were drowning in a sea of my own uncontrollable emotions. By Friday I felt like I was in the vortex of despair. “What is happening?” I wondered aloud. Then I remembered that I had restarted prednisone a few days earlier. I switched on my laptop and it appeared that it could be causing my sudden severe change in mood.

While I was researching on the laptop, Sue was consoling me and Marie was busy with the phone. Marie is the eldest child of two deaf parents. She has been making phone calls since she was four years old. No one can work a phone like Marie. In fact, she actually did answer phones part-time when we were in high school. She quickly established that there were no Saturday clinics at either Duke or UNC. I felt like I could make it through the weekend, but Sue and Marie had more sense than that. Finally I confessed that I had a friend who was a psychiatrist and I thought we could pose the prednisone hypothesis to him. Marie called and within minutes he was at my house.

My psychiatrist friend confirmed that the prednisone might be causing my hysteria. He suggested a plan to taper that drug. Then we discussed the reality that I am depressed. I have been trying to address this issue with the help of my family practice doctor, whom I adore. Unfortunately, I am incredibly sensitive to SSRIs. I feel great the first 7 days after I take them, the period during which they generally haven’t started working for the average patient. Then, when I get to the point where most people finally get a benefit, I develop severe anxiety. Knowing that I needed a psychiatrist to sort this out, I called 5 psychiatrists this week, and only one called me back. The soonest I could get into a private practice psychiatrist was July 1st.
Fortunately for me I have said psychiatrist-friend and a husband with a prescription pad. Over the next 24 hours we discovered that Zoloft comes in a liquid form that we could dilute to a very small dose in hopes that I could get the benefit of the anti-depressant effects without the side effects. I started the drug Sunday. Time will tell.

So I spent my girls’ weekend in a depressive stupor. Saturday I sat on the patio and knitted Aidan’s scarf (still not done). Because I taught myself to knit, I am not very facile with yarn and needles. My projects demand all my concentration so they are a very good antidote to depression, anxiety, perseveration, and all their terrible companions. As I knitted, I listened to Sue and Marie busy in the kitchen. They were making the cupcakes for Amelia’s birthday party and the cookie cake that she wanted for her family birthday dinner. They were laughing together and, as I listened to them, I got that feeling I often do as I watch Bill and the kids from afar: this is what it will be like without me. They will move on, they will find joy again, they will continue living. A part of me mourned that I was not part of the culinary festivities but my breathing was too labored and my anxiety too high to try in that moment. I joined them later at the table when I could help decorate the cupcakes.

Marie and Sue seemed to have a grand time. Sue prefers to leave the cooking to her husband Sean, but Marie ensured that she digitally documented Sue’s newfound baking skills. I teased her, “Now Sean is going to expect you to do this at home.” Amelia wanted an “A” for her cookie cake but Marie and Sue made so much dough that they were able to spell her entire name in very large letters. (The A required some post-oven surgery which was much more successful than the plastic surgeries of some celebrities who appear to be having difficulty with the concept of “ageing gracefully.” Shit, I’ll take ageing period. Who cares about the graceful part of it?)

By dinnertime I felt well enough to go out to dinner. We ate at Cinelli’s, Amelia’s very favorite restaurant. We toasted at 6:58 pm to mark Amelia’s arrival into the world despite the small technicality that it was actually 9:58 EST since she was born in California. Then we returned home to our cookie cake and watched “Grease.”

Marie, Sue and I sang along with the songs and, once again, I marveled at the amount of brainspace being occupied by 70s songs and apparently not in my head only. I relished every moment of sitting on the sofa with my best girlfriends and revisiting memories of singing along to the Grease soundtrack on my brother’s turntable all those years ago. We laughed at all the double-entendres we missed as young teenagers and hoped that my kids were missing all the cuss words. We gushed over John Travolta.

Sunday was a relaxing day devoted largely to waiting for Amelia’s pool party to begin. The rain spoiled the “pool” part of the evening, but the girls improvised by playing in the showers at the club instead. I suppose, given the thunder and lightning, that was not a safe activity but that didn’t occur to me at the time. I sat through most of the party, relying on Sue, Marie, and my friend Kathy to handle the festivities. Today was just one of those days in which I cannot seem to get enough air. As I watched these women play my part I thought to myself that it is just as I had promised Amelia and Aidan, “Life gives you many mothers not just the one of your birth. You will always have a mother when you need one. You just need to look for her.” There they were: three women mothering my children as I know they will do after I am gone.

When we returned home I was tired and needed to rest. I wrapped my arms around Sue’s neck and thanked her. I would have never been able to do the party without her and Marie’s help. As we embraced I realized that this may be the last time I see her, hold her, and tell her how much I love her. “I’m so afraid I will never see you again,” I cried, “I want you to know how much I love you, that you were a sister to me.” “I want to come back again,” she answered, but she has three young girls at home. “I don’t want you to regret anything. You are here. You did everything you could for me,” I assured her. I cupped my hand against her wet cheek and smiled at her.

I drove Marie and Sue to the airport this morning. I was fighting a coughing fit for most of the ride, and Marie and Sue were unusually quiet. As I took the airport exit, “Another One Bites the Dust” came on the radio. Sue and I laughed at the little sing along Marie had going in the backseat, “Steve and I listened to this song 41 times in a row to learn the words.” “I’ll try not to think of this song as foreshadowing,” I joked and we all laughed hard, like we used to laugh at something dark. We spent the rest of the drive debating the relative merits of various Queen songs and then, in the last few moments, I threw in a couple memories from our summer days at the Jersey shore. We laughed about the time I ran into a glass door. “Not one of your smarter moves,” joked Sue. And we struggled to remember the term we used for making prank phone calls. I use the terms “we” loosely, Sue and I laughed too hard to pull it off but Marie was a master at it. “Yes, Is this the such-and-such hotel? I was wondering, do you have mirrors on your ceilings? No? How about video taping equipment?” Marie could do this straight faced while Sue and I were rolling on the floor peeing our pants. “A Larry,” Marie called from the backseat, “We called it pulling a Larry.”

At that point we reached the US Airways stop. I looked at Sue closely; I wanted to remember everything about her in that moment: a pink and white striped shirt, black capris, brown sunglasses, freckled face, red hair, a pink tote bag slung over her shoulder and the most enormous black suitcase ever brought on a weekend trip. I burned the image into my brain so that I will have it in case there aren’t any others in the future. I watched Marie and Sue say good-bye, grateful that they will have each other.

Then it was off to Southwest. Marie and I embraced and I cupped her little head with its sassy short haircut in my hand, “I love you.” She returned the sentiment and promised to be back soon.

On the way home in the car, Kool and the Gang’s Ladies’ Night came on the radio. I thought about all the dances and parties Marie, Sue and I went to together. I pictured them dancing together someday at their children’s weddings, still crazy on the dance floor, still having a blast together.

Sue once sent me a card with three old ladies on it, each labeled with one of our names. I thought of the card today. What a great trio of old broads we would have been. It is not meant to be for I am not destined to reach a ripe old age. But I hope someday the two of them will sit together on a park bench, Marie and Sue debating the relative merits of each young hunk walking by and one will say, “Michelle would have liked that one.” For if any two people in the world know me, it is they.

Saturday, June 21, 2008

Fat Exchange Program

The other night at dinner Aidan turned to Marie and said unabashedly, "You must be wild about food or something because I have never seen anyone eat like you." Picture the animation of an Italian combined with the candor of a native New Yorker and the energy and impulsiveness of a new puppy on a freckle-faced elfish boy and you get some idea of Aidan. Aidan is not particularly into food so Marie is, in this sense, his polar opposite and a bit of a enigma.

Marie's love for food is hard to miss. She eats everything, licks the beaters, spatulas, serving spoons, etc. She places her finger inside serving bowls to get every last morsel. When I first developed an intolerance to dairy products, Marie would eat my mother's desserts and wax poetically about them to me. Her love of food and her deftness with the English language made me feel as though I had eaten the treat myself.

"I wish I could eat for you," Marie said at one point this week. "Me, too," I answered. I am eating everything I can and seem to only be able to maintain a weight of around 78 pounds. I cannot possible eat another thing.

Over the last several months I have entertained this fantasy of developing a "Fat Exchange Program" in which people could donate their unwanted pounds to me and I burn them off for them. It seems like a win-win proposition: the donors get to lose weight and I get the weight I need. There problem is that such a program only exists in my own fantasy world.

And, even if it were to become a possibility, the execution seems fraught with difficulties. I envision announcing my willingness to take unwanted pounds via some media blitz only to open my door the next morning and find an endless line of people willing to get a piece of the action. My basal metabolic rate is high but I have my limits. Then I'd have to choose whose weight to lose. I could chose those nearest and dearest to me, which seems wholly fair and justifiable. Or I could lose for the highest bidder, but I'm not really a capitalist, and I would feel badly taking advantage of someone's desperation in that way. Or, maybe, I could set it up as some non-profit organization, take applications, and chose the most worthy donors. Hmmm ... any way I look at it is seems like a very problematic approach to weight gain.

This is so American of me, looking for the quick fix. I am getting so impatient with this process. The whole process seems like a war with food and the scale as my enemies. I keep trying to tell myself, "It took a year to lose it (well, that's not true I lost the first ten pounds in two weeks, the second 6 pounds in a month and the last 2 over the past month) so I should give myself a year to put it back on." "But I want it yesterday," I scream inside like a petulant child.

Wednesday night we were eating dinner and Aidan remarked again to Marie that she really ate a lot of food. "Your mom could put it away in her day too," Marie replied, "The difference was that she never gained any weight." "Yeah," I answered, "That's come back to bite me on the ass, hasn't it?" (Over the past few weeks I have given up on not cursing in front of the kids. With limited time left on earth I figure I might as well teach them that, too). God, we used to chow. We'd spend Friday or Saturday nights watching movies and hanging out, especially at our best friend Sue's house (we were/are a trio). Since Sue was an only child, we could hang out there without being bothered by pesky brothers. When my dad would call to pick me up, Sue's father Hugh would inform my dad, "They are downstairs grazing." We didn't even take offense to the bovine comparison. We were just three happy, healthy teenage girls who already knew that food was central to life not own for physical sustenance but for the bonding opportunities that mealtime brings. I don't know if "Food is Love" but it certainly is a part of most loving relationships from a mother feeding her baby, to a family gathered for the nightly meal, to carefully planned and executed holiday celebrations. Some of my fondest memories involve loved ones gathered around a table enjoy each other company while nourishing our bodies.

I love to watch Marie eat, she reminds me of how I used to eat before my esophagus became so damaged and I had to start relying on pureed foods and pediatric formula. I can still enjoy the flavors of many foods and that is a blessing, and I continue to hope that someday I can return to my gluttonous little self only this time I want the weight to actually accumulate.

Friday, June 20, 2008

Constant Companion

I wrote this poem in Spring 2007.

She is with me in the morning
When my first deep inhalation unleashes a convulsive effort to clear my lungs
And when I take my pills
Brown and beige, blue and white
And struggle to swallow them
And when I look in the mirror and see a face that isn’t the one I remember
And when I slip my now scrawny arms into my blue fleece robe and my feet into my white slippers
And when I amble down the stairs despite the protests of my joints

She is with me when I open the refrigerator door and reach for the milk
And my fingers turn blue and painful against the carton
And when I struggle to make the days lunches
And when my children board the bus as I watch from the dining room window where I clutch a steaming mug and gratefully curl my toes against the floor vent

I am never alone

When I struggle with my socks and pants zipper
When I choose my sweater for the day
When I bundle against the cold in a place that barely knows winter

She is with me on my morning commute as I wait for the heater to warm the car
And in my office when my fingers tap the keyboard
Gingerly, timidly, warily
Perhaps she sometimes feels neglected, forgotten and interjects herself mid-sentence or mid-meal
A cough here,
trouble swallowing there,
an annoyed shiver against a blast of cold air

She follows me home and interferes with the meal preparation that I crave as meditation
Cold vegetables
Knife handles
Jars and cans
Her arsenal in our little war
But I refuse to yield

She is there still when I put the kids to bed
I struggle to read aloud
And to lie with them
But the bedtime ritual stands against her like a flag in the wind

She hates when I sing
Or I try to run
Or play outside on a crisp fall day
She doesn’t like me to be too comfortable

She is greedy
And demanding
And insatiable

She pursues me doggedly
But she does not come empty-handed

She is steadfast
and learned
and patient

I have been an ungrateful and slow learner

She has taught me the rhythm of the seasons
To heed autumn’s call with warm soups and busy knitting needles
To succumb to winter’s hibernation
To welcome spring barefoot in the grass
To relish summer’s heat on my skin

She has taught me gratitude for all things great and small
Uninterrupted sleep
Flannel sheets
Hot showers
True friendship
Unconditional love
And to cherish the rapidly passing moments of my child’s lives
And to appreciate today rather than bank on tomorrow
And to accept that it is under life’s greatest pressures that we become transformed
Like a humble lump of coal

She has shown me that pain and suffering are great teachers
And that death is an integral part of life to be embraced in its rightful time rather than feared
And that true love endures all things

On a spring day I toil in the garden
I watch earthworms till the soil
These seemingly simple creatures that turn dirt into a medium in which life flourishes
I hear the cricket’s song
I marvel at the scarlet wings and creamsicle beak of cardinal and a mauve-breasted blue bird
While the daffodils, hyacinths and tupils perform spring’s overture
Miracles abound

She is with me
As I wait on a prayer that has already been answered
I am alive.

Thursday, June 19, 2008


Amelia was driving me crazy last night. She is in that developmental stage in which she forgets any instruction if she doesn’t carry out immediately, and her room is in perpetual disarray. Beginning at 8:30 I asked her to bathe and ready for bed. I have neither the energy nor the ability to nip at the kids’ heels these days. At 7 and 9 years old they should be able to get ready for bed without repeated step-by-step instructions. After all, they have to do the same thing (give or take a bath/shower) every night. How hard can this be? Apparently, it is very, very hard.

At 9 pm, Amelia was finally out of the bath and putting Benadryl on her many bug bites. When I followed her to her room to sing her songs I discovered the usual assortment of dirty clothes all over the floor and other items strewn about. I was so tired myself and ready for bed and I lost my temper, “Sorry, Amelia, you lost your lullabies for tonight. Clean up your room and go to sleep.” Then I turned and left the room with her in tears behind me.

Motherhood is not all Hallmark moments. My kids drive me crazy hourly. Hell, they drive me crazy a lot more frequently than that. I often think of my mother with her five kids and wonder, “What in God’s name was she thinking?” Every mother dislikes her kids sometimes and anyone who says that they always enjoy their children is a liar.

Of course, for me, this is a little tricky these days because I am like every other mother: sometimes I want to squeeze the stuffing out of them with a great big hug, and other times I want to drive them to a remote location and leave them there. But then I remember that I will have to leave them someday and I won’t be able to drive back and pick them up. It will be an abandonment of the most permanent kind.

I felt badly for depriving Amelia of her songs. It is the highest form of punishment in our household. And, in my current situation, I cannot afford too many angry moments that deprive my children and me of opportunities to make happy memories. I went back to her room and she was still awake, listening to the CD that I had burned for her (see post “Nesting”). Helen Reddy’s, “You and Me Against the World” was playing and I asked if I could lie with her. She was lying on her back in the green and white striped pajamas that I bought her for Christmas. Every year they get new Christmas Eve Pajamas; the latest ones make them look like members of Santa’s chain gang. I laid my head across her chest and rested it on the panda that she was holding so that she wouldn’t feel my inevitable tears through her shirt.

When I was a girl in the mid-seventies, Reddy’s song always made me feel sad. I couldn’t have been very old – perhaps 5 or 6 – at the time and I would listen to the words and imagine life without my mother. Perhaps it made every little girl within listening distance feel that way, but it wasn’t the only song that made me think about the inescapable cycle of life.

On Sundays my parents would listen to “Sundays with Sinatra” and often dance across the floor of our small living room. I used to love to watch them, the way they flowed so effortlessly, my mother’s ease on her feet, and the funny way my dad would hold his head. Sometimes my dad would let me dance with him and I would try to follow his feet with mine on the carpeted floor. I loved those nights, but whenever “It Was a Very Good Year” played I felt very sad and wanted to leave the room. Even as a small child that song made me feel melancholy and rue the passage of time. Looking back I don’t know why I understood the words. Maybe I didn’t. Maybe it was just Sinatra’s amazing ability to convey the meaning of the lyrics. Maybe it was just the minor key, and the words didn’t matter at all.

Or maybe I was primed to appreciate grief at an early age. When I was born, my maternal grandmother was in the final stages of pulmonary sarcoidosis, an autoimmune disease. My mother and her sister had each given birth in January. My mother finally had a daughter after three sons and my aunt had her second but only surviving son after two girls. My aunt lived across the street and they took turns caring for their mother while they cared for their newborns.

Apparently I never slept as a baby, a problem that appears to have remained with me. “Claire,” my grandmother would call in Italian, “Bring the baby to me.” I spent those first weeks of my life with her while she spent the last weeks of hers. She died in March when I was 10 weeks old.

I often wonder about her now as I sit here with my sick lungs just as she did some 40 years ago. What did she say to me? And what did I understand in my little newborn mind? Did I gain some understanding that death is a part of life from the get-go?

Don’t get me wrong. I was always a happy kid, a glass is half-full kinda gal. But songs would get me now and then and make my heart ache with the realization that everyone has to die.

I burned the CDs for the children while my mother was staying with us. When I played Reddy’s song my mother’s eyes filled with tears, “That song always makes me think of my mother.” She left the room unable to listen to it, but I listened and cried. As a child the song made be mourn the loss of my mother and, instead, I am the one leaving her and my daughter.

As I lay with Amelia last night I only cried a little bit. She was falling off to sleep in the easy way she does every night. I felt her breathing slow as her mind and body let go of the day. I thought about how the song had passed from my mother, to me, and now to Amelia, like an heirloom that none of us really wants to share. But in the words I found comfort that “memories will have to do” and that here I was making one more happy memory for her, just as I should.

Wednesday, June 18, 2008

I Think I'll Go For a Walk Outside Now

Marie and I met in eighth grade when we were among the last 5 contestants in an academic decathlon for girls a a local high school. She had the audacity to beat me. I was highly frustrated when I learned that she and I would be attending the same preparatory school; I imagined her as my nemesis for the next four years. As I was leaving the auditorium that morning with my dad, I groused about this new person who was going to enter my life. "She's going to become your best friend," he said to me calmly and in a very uncharacteristicly clairvoyant way.

On the first day of school I happily noted that Marie was not in my home room nor in any of my classes. About a month into the school year I went to Glee Club auditions and there she was. I was warming up with "I am 16 Going on 17" from The Sound of Music. "That is nauseating," Marie said from her chair. I gave her a stare. But then she explained herself. She liked my voice. My icy walls began to melt and over the next few weeks my own little personal Ice Age was over. Before our first semester of high school ended, Marie and I were inseparable. Sure I would always resent that she would get a higher grade on the essay she wrote in homeroom than I would receive for the one I spent days toiling over, but she was the sister I never had and I loved her from the top of my head to the tips of my toes. And I still do.

The day after Marie arrived here in NC we sat out on my patio and shared openly about the life decisions facing each of us: which was the path to happiness and acceptance of ourselves? We helped each other slash through the Catholic guilt, mental machetes in hand and we wrestled the whips out of each other's hands. We talked about the biblical passage on the proprietor who gives his works various sums to invest in his absence and how that passage had affected us both. We had each been given so many talents and felt so impelled to use them fully. I reminded her about Sister Michaelann, the nun who had been our Student Council moderator thought our four years of high school.

"Marie, if she was here with us what would she say? She'd be so proud of us. She'd make us see everything we accomplished and reassure us that we have nothing left to prove. She'd make us see that here we are still together -- the best of friends -- after all these years."

I longed for Sister Michaelann in that moment because she was amazingly intelligent with profound insight and an extraordinary eloquence. She would know what to say. She would tell us that we had already used our talents wisely and amply. She would take those whips away. But Sister Michaelann died years ago so Marie and I would have to do it for each other.

In Marie's presence, my whip has been put away, I have rediscovered laughter, and I feel like I am sitting in the lap of love.

The day before Marie arrived I decided to take a walk. I had denied myself this daily joy because I didn't feel like I could afford the caloric output. I lassoed up the younger puppy because I cannot handle both dogs. They spend the entire walk dragging me all over the place leaving and sending dog messages in the bushes and grass and, together, they outweigh me by 50 lbs. We moseyed (and I do mean moseyed) around the neighborhood. It felt so good that I did it again on Sunday, caloric expenditure be damned. On Monday night we were all eating dinner when I informed Bill and the kids they needed to go get some water shoes at Target, "I am going for a walk." Then I started singing the Brady Bunch song, the one from when they are in the singing contest, "I think I'll go for a walk outside now. The summer sun's calling my name ...." Much to my surprise I knew all the words (if only I could use all the brain space devoted to 70s songs to something a tad more useful). Marie chimed in and we did hand motions at the table. Aidan left the table in sheer embarrassment, and Amelia laughed at us. Thirteen years into his life with me (and Marie, we are a two for one deal), Bill no longer even considers such behavior as anything but normal.

And that was the magical thing ... it was my normal -- my old normal, the old me -- not the petrified, paralyzed me that I have been for the last 4 months. And I walked Monday and Tuesday in a slow and steady but thoroughly enjoyable fashion. I went to Target yesterday and I pushed the damned cart myself with occasional relief from Marie. I bought the supplies and favors for Amelia's ninth birthday party. Then I picked up the kids from camp, took Amelia to get her hair cut, and took both kids to the dentist. I have been doing these things off and on for the past few months but today was different. Today felt like I was doing it with a full heart and an able body. I was tired at the end of the day and I woke at 3 am absolutely ravenous. I ate a 500 calorie serving of coconut flan and went back to sleep. Maybe I just need to eat in the middle of the night too.

So now the trick is to do this again today, and the next day and the next day, ad nauseum. And to keep doing it, even when Marie is not here walking by my side. Because the only antidote to dying is to live. And I am tired of the slow march towards death. I'm ready to turn around and rejoin the land of the living. Feet, and more importantly mind and heart, do NOT fail me now.

Monday, June 16, 2008

Shit Happens

Before I became a mother I had this notion that a newborn child was like a lump of clay that could be molded in my loving hands. Yes, I was a firm believer in nurture over nature. Two children into the experience it became clear to me that children are born with much of their personality already hardwired. In contrast to malleable balls of clay they seemed to be nearly completed marble statues. The best I could hope to do was to soften the edges.

I was in the car today with Amelia. She doesn't speak much these days given that her nose is buried deeply into her Nancy Drew books. As such, I spend much of my driving time in a state of cogitation.

I was thinking about how very different Amelia and Aidan are. They are different in nearly every way. She is fair; he is dark. She is following Bill's growth curve while Aidan follows mine. She loves books and writing while he prefers legos and implements of destruction. She is easy-going, and he is feisty. The list goes on and on. Sometimes it is hard to believe they share genetic material.

I was trying to come up with a way to summarize the differences in their personalities. It occurred to me that, if Amelia and Aidan stumbled across a pile of dung, Amelia would look at it and say, "Great! Fertilizer." She always looks on the bright side. And Aidan? He never minces words and calls it just as he sees it. He would look at the steaming pile and say, "No, that's a load of shit."

Something about this image made me laugh hysterically. I was laughing so hard that Amelia began looking at me as if I were deranged. I finally had to admit to her what I was laughing at after making her promise not to use the word "shit." As I sit here writing this, the image oddly gives me some amount of peace. Whatever happens, Amelia will turn it into something good, and Aidan will deal with it honestly and openly. He won't be afraid to say that life had been unfair. But, ultimately, I think that his realistic nature will allow him to move on, knowing that sometimes "Shit happens."


I am terrified in a way that I have never been before in my life. Even staring at the barrel of an AK47 pales in comparison to this. That death would have been quick and left no motherless children behind. This death is a slow march along an uncertain path filled with choices that I do not want to be responsible for making. Everything feels like it is unfolding in slow motion and the constellation of emotions that fills my day – their sheer number and intensity – leaves me mentally exhausted.

I have taught Amelia and Aidan that there are two kinds of fear: the fear that protects and the fear that paralyzes. The former keeps you alive while the latter keeps you from living. The irony for me at this point is that I am trying so desperately to make choices that will protect me that I feel completely paralyzed. The responsibility I feel for choosing the right path is enormous and weighs on me like a suit of armor that immobilizes more than it protects.

I used to be able to discern between the two types of fear. There was a difference in the way they felt in my gut. There is a difference between the adrenaline surge that keeps you from walking down a dark alley and the one that keep you from boarding a plane to your vacation in an exotic locale. Maybe our guts understand probability.
But now my gut is in a knot and I cannot understand its messages. All it seems to be saying is, “I am desperately afraid.” So I am trying to innumerate and understand my fears, hoping that I might be able to deal with them one by one.

Little of my fears or anxiety lie in the past. I have few regrets, which is a blessing for me. I have lived my life fully so I need not waste energy contemplating foregone opportunities. I do wish I could change some medical choices that I made over the last year but I am learning to let go of these as well. Like most people I am afraid of what lies ahead: the months and, hopefully, years to come.

Perhaps the greatest of my fears is the uncertainty of what lies ahead for me. I feel as though the end of my life is drawing near. I cannot discern of this is depression talking, a realistic assessment of the situation, or a sixth sense. I don’t want to die. I have loved living and I want to be with my children and Bill for years to come. But I have this overwhelming sense of foreboding that my time is running out, like I am reading a novel and the author has foreshadowed the ending, and I just don’t want to read any further. When I was a child I would read the end of a book before the beginning and, if I did not like the ending, I would elect not to read the book. That’s how I feel now. I don’t want this ending. Of course, I am acting like I know then ending when, in reality, I don’t know at all. But when you lose weight despite eating as much as possible it is hard to convince yourself that you are not slowly starving to death.

I am afraid of being a failure. All my life I have been able to achieve my goals. What I lacked in innate intelligence, I was able to compensate for with hard work and tenacity. And now I cannot seem to effect any change in my health. The weight gain is proving difficult if not impossible. Because of the cough, I am fairly limited to eating soft and pureed foods. Neighbors have been marvelously generous in preparing soups, sorbets, and other foods for me and I eat every two hours for 12 hours a day. And yet even maintaining my weight has become a struggle. I feel responsible to fix this, to rectify the situation; yet, I seem powerless to do so. My lack of control and my irrational sense that this is some how my fault is fueling a depression that I also cannot contain.

I am afraid of physical suffering. My physical suffering has decreased substantially since the removal of the feeding tube. I can move about freely and without pain. My hope was that I could eat enough to slowly gain back weight over the coming months in a natural way without additional medical intervention. The prospect of needing TPN is overwhelming to me. I don’t want any more tubes, I don’t want to go into the hospital again, and I don’t want to spend 10-12 hours of everyday hooked up to intravenous feeding. But if I cannot gain maintain my weight on my own, I am not going to have much choice.

I am afraid of mental suffering. Prior to the last several months I have had no experience with true depression. I have endured physical pain in many forms over the years and I can honestly say that it pales in comparison to emotional anguish. Depression is an insidious and powerful beast. There are days when I feel like someone has cast a gray film over everything. I search for joy wherever it lies. This week the house felt so sad. So I turned on the Monkees CD and the kids and I danced in the kitchen (I find I can dance if I keep my feet in place and shake my booty and wave my arms only). It was such a small thing, just a brief moment but it put a smile on all of our faces and made life seem normal. And then there are moments when all I can see is everything I stand to lose and I want to curl into a ball and die, just to get it over with. So it doesn’t have to hurt so much everyday.

I am afraid of leaving my children unanchored in the world without a mother. I worry that they will never be able to heal the hole in their heart that my death leaves in its wake. I know they will never be the same after losing me and I want to trust that it is not an irrecoverable loss. But it is so hard to imagine how one ever recovers from losing a mother at such a tender age. That is why I am grasping at medical straws that I thought I’d leave untouched. I need to be able to look at my children and say, honestly, “I did everything I reasonably could to stay and now the most loving thing I can do is set you free from my suffering and yours.”

I am afraid of an undignified death. I do not want a hospital death, hooked up to tubes and machines. I want to go peacefully. I am afraid that being on TPN will make this impossible.

I am afraid to die. What if there is nothing after this life? What if it truly is an ending and not a transition? I cannot bear the idea that I will never see Bill and the children and the many people I have loved throughout my life again.

A couple months ago I had a dream that I had been called on a space mission for, of all things my mathematical skills (this is a very laughable idea). I entered into a large steel elevator and traveled to the mission center. When I arrived it turned out I wasn’t really needed and I spent all my time socializing with similarly redundant staff. At some point I had to repack my bags. Having accumulated a great deal during my visit, I had to leave a lot of things behind before making my way back to the steel elevators. I entered the large box once again and retraced my journey. When the steel doors opened again, Bill was there with the children and we were happily reunited. After I woke I felt certain the dream was a message to be at peace and that we would all be together again someday.

I try to use this dream to counter my many fears. And I try many other coping skills as well. I try to focus on being present in the moment. I physically feel my body in its surroundings. I finally realized this week that being present in the moment does NOT mean being happy; it means feeling whatever you are feeling at the time: sadness, fear, desperation. Being with the feeling seems to neutralize it somehow. And I have finally admitted to myself that I am clinically depressed and that I need to see a psychiatrist. This was a very hard thing for me to admit because I am hell bent on being “strong enough” to manage all this myself. Unfortunately, I cannot do SSRI because black-box warnings were written for the likes of me. They make me feel great for about 10 days and then they make me rock back and forth and wish to return to the womb. So let’s hope there’s a drug out there that can take the edge off for me without making me crazy.

There is the old saying about the past being history, the future being a mystery and the today being a gift. I remember seeing the MIlagro Beanfield War in college with m ex-boyfriend. At one point in the movie an elderly gentleman wakes, washes his face, and gazes into a decrepit mirror and says, “Thank You Lord for another day.” My ex thought he was being sarcastic, but I thought he was being quite sincere. I try to express that same sentiment throughout my day to remind myself that I AM still here and to resist the urge to enter some emotional coma that deprives me of the joy still available to me.

I didn’t realize how difficult this would be emotionally. I was never a big fan of amusement parks and I feel like I am on an interminable roller coaster ride. And I am holding on for dear life in more ways than one.

Sunday, June 15, 2008

My Cup Runneth Over

Last night was my friends hosted a scleroderma benefit in my honor. We had about 35 people there and so far the event has raised over $4,750, which both impresses and humbles me. Many thanks to those of you who donated.

I wanted to share what I said at the event last night. I didn't say very much because I knew I would cry. But this is what I did say ...

"Last year I ended my speech by saying that I had survived my disease thus far because of Bill. The last year has been the most difficult year of my life. At a time in my life when my cup seems to have so many holes in it, people just keep coming forward and pouring and pouring to fill it back up. Bill, the kids, and I have survived this year because of all of you. And I keep going because of you. 'Thank you' doesn't seem like enough but I mean it from the bottom of my heart."

When Bill took the opportunity to speak he said, "It takes a village ... And I am glad to be a part of this village."

Ours lives are filled with so many hard decisions these days. The emotional weight of it all is finally wearing us down, but we can keep putting one foot in front of the other because we are surrounded by such loving friends and family.

I don't know what I ever did to be worthy of such an outpouring of affection but it sustains me.

Thank you.

Saturday, June 14, 2008

Ponderings & Postures (Avoid Alliteration Always)

Yesterday I was walking Amelia over to a friend’s house for a sleep over party to celebrate the end of the school year. Earlier in the week, a therapist had suggested to me that I let the children know that I, too, was afraid of what the future holds. In admitting my own fears, I might give them an opportunity to express theirs.

I suppose the walk wasn’t the best time to start this discussion, but something made me say it. Perhaps it was the way Amelia had spent the afternoon curled in my lap with one of her many Nancy Drew books. It was as if she knew that I wasn’t feeling well and needed the company.

“Do you know that I am afraid, Amelia?” I asked her as we walked. She was carrying her purple pillow and I had her overnight bag. “Yes,” she responded looking, at the ground. “Do you know what I am afraid of?” I continued. “You are afraid that you are dying,” she answered matter of factly. “You know why I am so afraid of dying Amelia?” I responded rhetorically, “Because I love you so much and I do not want to leave you.” For a few steps we said nothing to one another and, surprisingly, no tears fell from either sets of eyes. “But you know what, Amelia, no matter what happens – even if I die – everything will be ok,” I reassured her, “You have the most amazing spirit and I know you are going to be ok.” Less than a minute passed and she casually commented, “I just hope that, if Daddy remarries, he remarries someone nice.” I smiled noting that amazing spirit shining though. “I’m sure he will honey.”

I know there is a long painful road ahead of her, but I also know that she has a loving father and an amazing support network that will shepherd her and her brother through this. I have to believe, for my own sanity, that she will weather this tragedy and that her spirit will remain unbroken despite the powerful blow of losing me. In the meantime, I just hold her and touch her as much as possible. I French braid her hair and admire the sun-kissed highlights. And every night when I leave her to her slumber I call out, “I love you and like you,” just as she has always bid me good night.

Bill and Aidan had a guy’s night out at the bowling alley. It was Aidan’s perfect night: dinner at Chik-fil-A, bowling, video games, and his Dad’s undivided attention. Then they came home and watched a Scooby-Doo video. I found them snuggled together on the sofa when I returned from my massage appointment. When it came time for bed, Aidan was feeling a little scared from the monsters in the video and wanted me with him as he prepared for bedtime. He held my hand as we walked up the stairs and I relished the feeling of his still tiny hand in mine. He prepared for bed and looked at his binder of Pokemon cards while I showered. Then I sang to him and kissed him good night.

Earlier in the evening, during my massage, I had a feeling of complete terror while the therapist worked on my body as I lay on my stomach. I could feel that I am nothing but skin covering bones; I could feel that my life is slowly slipping away. When I rolled over onto my back, the tears flowed uncontrollably. Fortunately my therapist is one of those peaceful souls who can handle such an emotive state. We talked openly and honestly about my fears of dying and her experiences with the loss of loved ones. I left feeling lighter, but with that nagging feeling that my body is telling me something that neither I nor anyone else in my life wants to hear.

After Aidan was off to sleep, Bill and I retired to the living room, “I’m really afraid Bill.” “What are you afraid of?” he asked. He is so black and white. He sees that I am eating so he thinks it’s all going to get better. “I can just feel it slipping away, Bill. I can tell I am not gaining weight. In fact, I think I am losing. I look in the mirror and I can see it.” I look like a resident of Dachau. I am eating everything I can, I rest every afternoon on the sofa, I minimize energy expenditure as much as possible. But it does not seem to be enough. I must have the world’s highest basal metabolic rate.

Bill is a problem solver. For every expressed emotion, Bill’s response is the same, “What do you want to do?” I admit to him that I am beginning to believe that TPN is the only way that I will be able to keep living. We spend the next thirty minutes debating the options when I finally reach my limit, “I’m tired.” I head up to the bedroom and he follows me. I brush my teeth and take my meds. When I turn around I see him sitting on the bed, his hands full and flush against his face. It is the most distressed and distraught posture I have ever seen him take. I go to him, wanting so much to comfort him. On this journey towards the inevitable end, the husband is ten paces behind the wife.

I sit with my chest and stomach against his right arm. Extending my left arm I reach across his chest, broad for such a short man, and grasp a hold of his left side. I drape my right arm across his back and rest my right hand against his collarbone where his right hand reaches up and grabs hold of mine. We sit there, silently, for a few moments. In my mind I think it seems like some sort of couples yoga pose. What would it be called? “Dear Life?” “Desperation?”

“I want to keep going, Bill,” I explain, “I want to be here with you and the kids.” I know in my heart how hard TPN is going to be. But I don’t see how I can continue living without it. I just cannot seem to get enough food in to keep my tiny little body going. Who knew such a small body could need so very much?

I never thought I’d go down swinging. I thought I’d do the graceful exit. But on Thursday night Aidan and I were sitting on the front steps. “Mom, why do teenagers kiss like this?” and then he made a funny face. “Oh, they just do that for TV and the movies, honey.” “No,” he persisted, “I’ve seen them do it in real life.” He then proceeded to name all the places he had witness adolescent displays of affection: Target, UNC, Duke, the movies, etc. “Well, it’s just a grown-up way of kissing. You’ll do it someday too.” “Ah, C’mon” he giggled. “C’mon” I playfully elbowed him in the ribs. And we laughed and laughed. Then he and Amelia ran through the sprinklers and I thought to myself, “This is worth it. I need to keep going.”

Friday, June 13, 2008

Baby Tiger

On Tuesday I went through the piles of schoolwork that came home with the children on their last day of school. I sat alone at the kitchen table dividing their work into those destined for the circular file and those worthy of saving. I came across Aidan’s first-grade writing journal and began flipping through the pages. As I perused the drawings and pored over the words, in their awkward and misspelled script, I was amazed at the proportion of them devoted to my illness and me. On page after page, he wrote about his sick mother and how sad he was, the words surrounded by unhappy faces with tears falling from their eyes. On one of the last pages, he drew a family picture. My figure included my feeding tube attached to the pump and IV pole. He had taken pains to draw the pump and pole in great detail, right down to the four wheels at the base of the pole. My heart ached for this poor child who is clearly so consumed with worry about my illness that his mind returns to this drama time and time again when he needs fodder for a writing assignment.

That same night we went through our usual nighttime ritual: he read to me and I sang his songs. While I was singing he rolled onto his back with his head hanging just slightly off the bed. His eyes closed, a contented grin eased across his face. When I finished singing I observed, “you look like a kitty cat.” He rolled over on to all fours and pretended to purr and snuggle against my arm.

When Aidan was younger, he had a host of animal personas, each with a unique little personality. Often, when I was on my toes, I would invoke one of his animal personas to cooperate with an order when Aidan didn’t want to play along. Of all the personas, Baby Tiger, was his very favorite.

Last night my comment about his contented Cheshire cat grin must have touched off the memory. It has been nearly two years since we last played Baby Tiger. “Can we play Baby Tiger?” he asked excitedly. I went along and we played it just as we always had. In the game he is a baby tiger all alone in the jungle and I am a ferocious tigress. When I first come upon him he is hiding and I pounce upon him, harming him albeit slightly. As I pull him from the foliage I realize that he is just a cub. “Where is your mother?” I ask according to Aidan’s strict script. “I don’t know,” he whimpers his part, “she went into the jungle and hasn’t come back.” “Oh,” my furious tigress melts into a gentle mother, “You are all alone. Do you want me to take care of you?” In our game he returns with me to my den where I feed him paw to mouth. He opens his mouth and smacks his lips together, pretending to take in much needed sustenance. Then I wrap him in blankets and bid him good night, “I am sorry I hurt you Baby Tiger; I promise to take care of you now.”

I suppose Baby Tiger started when Aidan was about 4 years old, long before my illness had wreacked havoc with our lives. We must have played this game over 100 times since then and last night it hit me like a ton of bricks. “He knows,” I thought to myself, “He’s always known that I am going to leave him. He really is Baby Tiger.” How did I never see it before now? And I left his room feeling guilty for my oversight and desperately sad for my poor little boy.

Someone told me our souls chose their destinies before coming to earth. This notion appeals to the control freak in me and, today, I gave this idea a lot of thought. The comedienne in me pictured a line of souls in a room not unlike the unemployment office. I pictured my soul getting to the window and being told my options by some overworked individual in their version of purgatory, “Today I can offer you a happy existence complicated by scleroderma or starving in Malawi.” Naturally I imagined myself trying to negotiate a better deal to no avail and ultimately settling on the former. But then I tried to picture my children’s souls opting for life without a mother and all the babies in Africa sentenced with the same fate but far fewer resources with which to recover. Why chose such a fate?

And another thing occurred to me. When does our soul forget the chosen path? Aidan was born five weeks early, maybe he missed the crucial window for forgetting the fate he had chosen for himself. Maybe that is why Aidan always seems to view the glass as “half-empty.” Maybe that is why he is so easily upset and angered. Maybe he has always known he got a raw deal.

Or maybe Aidan is just intuitive and emotional.

When we lived in Paris I befriended a woman named Fabienne. One day we were sitting in the courtyard of our building watching the children play. Aidan ricochoted from one emotion to the next, as per his usual. “You know,” Fabienne observed knowing nothing of my heritage, “Aidan is very Italian.” And he is. He feels everything, all the way. His anger is volcanic, his laughter unbridled, his joy uncontainable, his curiosity insatiable. He can be so infuriating one minute and so loveable the next. He is exhausting. But his senses are so fine-tuned that he overlooks nothing. Perhaps he just picked up easily on all the subtle clues before the rest of us did.

He knows he is going to lose me and he copes by engaging me in a dance in which he pulls me close only to resist me. He wants so much to have me near but cannot bear to need me that much knowing I will someday be gone. So he pushes me away, sometimes physically with angry feet and hands and sometimes with vicious words. What can I do? When he pulls me close, I hold on for dear life, “My boy. I love you so much.” And when he pushes me away I try not to take it personally because I know his heartache. Sometimes I cannot bear to look at my kids; it hurts too much. And I wonder if sometimes he looks at me and wonders, “How can you leave me? I need you.”

What a burden to bear on such small shoulders. So I keep asking God or the fates or whoever is in charge, “Please I need more time. Just let his shoulders grow broad enough to bear the burden and then I can go. He is not ready yet.”