Saturday, May 31, 2008

Coming Clean

Edited from original version dated january 2008

I was trying to figure out why I am sending these essays out into the blogosphere. Writing them certainly helps me process my experiences and feelings, but why share this with everyone else? People often ask me about my health and I want to share my story, but there is more going on then can be reasonably included in one conversation. And I never really know how much information is too much. I don’t want to be a bore or a killjoy so, over the years, I have tended to keep a great deal to myself. I now find that I just cannot contain everything that I am feeling, and the only way to manage this kind of emotional storm is to get it down on paper.

But it’s more than sharing the details and keeping people up to date. I am dying. At first I thought it was happening slowly, but over the last few weeks it seems like I have boarded a rapidily moving train: the VVF to death. I feel like I am in a race against time. I have so many things left to do.

I try to cram in as much information as possible. I’ve already taught the kids about sex and their bodies. I teach them how to cook: “put a lid on the pot it will boil faster,” “don’t salt the beans they will never soften,” “nearly every baked good needs salt even if the recipe doesn’t call for it,” and on and on. One night, after Bill made a particularly funny joke at the table, I asked Amelia, “Do you know why I married your dad?” She shook her head from side to side. “Because he made me laugh,” I replied then added, “And he was a good man. I knew I he would never hurt me. Amelia, looks fade, but true goodness and a well-developed sense of humor never go away.” There is no way for her eight-year old brain to grasp what I am saying to her. I just hope the words stay with her until the time that she can understand them.

Our lives have a running narrative of lessons; I hope they are listening. There are so many things that I want to teach them. So many things left to do before they are ready for me to go, before I am ready to go.

But, who am I kidding? They will never be ready and neither will I.

I will be 39 years old next Friday -- almost middle-aged -- and, yet, I call my mother when I am sick. I crave her embrace when I am feeling my worst or the world has been unkind. Bill tries to comfort me, but often she is the only voice I want to hear. When do you stop needing your mother? When would it be ok to go? Will I ever feel like I have done my job and that I will not leave my children unanchored in the world?

This is what it is like to be dying. I try so hard to be present in the moment. I try not to let my death be so much a part of my life. But it seeps into every crack and crevice. It’s always there not a figure carrying a scythe but a feeling of loss and sadness. I suppose it sounds like depression but I cannot imagine that this is merely misfiring neurotransmitters. Rather I suspect this is how dying is supposed to feel: an acute awareness of everything that you and your loved ones have and will lose when you pass away. Every moment is simultaneously beautiful and painful.

I have spent much of the last 10 years of my life thinking about dying. I have done much of this privately though I have certainly had moments in which my internal struggle boiled over into interactions with others. Until recently, my thoughts about my own death have been largely unspoken or shared only with Bill. And now I feel as though I need to come clean and tell everyone the truth. Dying sucks. Sure, I have been given insight into how precious life is. And I have learned to cherish life’s little details. I think I have become a better person for it. But the price is really high. It’s not just the, “Geez, I’m going to be robbed of a good 40 years of living” but all the small losses that the dying process brings. It’s the inability to open a jar that derails a lunch that I looked forward to all morning. It’s the inability to lift my voice in song at church as I have done since I was an 8-year old child in the choir loft of St. Dominic’s. It’s letting go of my dreams of seeing the children graduating from college, marrying and having children of their own. It’s letting go of the daydream of swinging on a porch swing side-by-side with Bill and resting my head on his shoulder long after his red hair has turned white.

I was once on UNC’s main campus and saw a group of touring seniors and their parents. I wasn’t feeling especially sad that day, but at the sight of those prospective students I was overwhelmed enough to duck into the nearest bathroom and dissolve into a fit of tears. All I could see was Bill, alone with Amelia or Aidan. I should be there, but, in all likelihood, I will not. I am sad for me, but I am much, much sadder for the kids. It’s so unfair though it could certainly be worse. Like we tell the kids, “You get what you get and you don’t fuss or fit.” Easier said than done.

Why tell you all this? Misery loves company? I don’t think that is it although I feel less alone when I tell my friends how I am feeling. What I really want to say to all of you is go outside and run. Feel the wind in your hair and the cool air on your cheeks. Run until you feel tired and then be grateful your body lets you do that. Sing at the top if your lungs (even if you sing as badly as Bill does), dance in your bedroom, take the trip that you are dying to take, do the things that make you happy, etc. Bill’s grandfather lived to be 89 and was healthy enough to bike and golf until the last few months of his life; few people are that lucky. Someday you may not be able to do the things that you love so make sure you do them now, while you can. Everything we all said in the days after 9/11, all the promises that we made – spoken or unspoken – need to be made good on. Enjoy the ride folks just in case we only get one go around.

Personally, reincarnation is looking better and better as long as I get a good gig next time. I’d like to put in an order to be a golden retriever at a reputable breeder in the United States. That way I can get adopted into a good home and eat, sleep and play (my three favorite things) all day. Of course, I’d have to shit outside, but I can accept that.

Mirror, Mirror On the Wall

Originally written Fall 2007

Growing up as the only girl in the Mayer household wasn’t easy. My brothers were legendary for their good looks in our neighborhood. One was better looking than the next, culminating with my little brother who bears a striking resemblance to John Stamos. When people realized I was the “girl in the Mayer family,” I would get responses like “You’re the one with all those gorgeous brothers? Really? You don’t look anything like them.” If I had been born with a more ascerbic tongue I might have responded better, “You have a brain? Really? You don’t act like it.” Even on my wedding day, my brothers upstaged me. Friends from North Carolina, meeting the Mayer clan for the first time, were like a parade of well-wishers gone awry, “You never told me how handsome your brothers are.” My sarcastic responses, “You never knew why I left Philadelphia?” went unnoticed. Even one of the ushers got into the act, “Jesus, Michelle, your brother Keith is so gorgeous even I can’t stop looking at him.” And here I thought it was MY big day.

I wasn’t ugly mind you, just plain. Well, actually I was ugly from ages 7 until age 12. I got glasses in second grade which didn’t help my situation. My mother, devoutely religious, insisted that I wear blue frames because that was the color of the Blessed Mother who, being flattered by this gesture, might intervene on my behalf and reverse my myopia. As if the Blessed Mother had nothing better to do with her time and allotment of miracles. We also put a holy card of St. Lucy, the patron saint of eyes, in my room. St. Lucy is usually pictured holding a plate with two eyeballs on it. Imagine looking at that every night before falling asleep. Apparently Mary and Lucy were either unimpressed with these efforts or otherwise occupied because I am still blind as a bat. My parents were tuned in enough to get me contact lenses before I entered high school and that helped my looks considerably. Sans spectacles, I was presentable and being short and outgoing put me just over the edge into the “cute” category for most of high school.

Even if I had been blessed with good looks, I would not have known what to do with them. I’m terrible at applying make-up, doing my hair, and dressing fashionably. I look at my sister-in-law, Ann with considerable envy. Ann is one of the only people I know who wakes up beautiful. She is not only stunning but also one of the nicest, most down to earth people that I have ever met – a rare combination of terrific looks and personality plus. I swear her husband Jon must stare at her sleeping face every morning and gleefully remind himself, “She’s mine.” On an average day, Ann doesn’t fuss with her appearance (she doesn’t have to, she looks better unshowered and make-up free than most women do on their wedding days, self included), but when she makes the effort, she could stop traffic. Her hair and make-up are flawless and her attire timeless; she looks like she just stepped out of a photo shoot. Her only inperfections are her height and freckles and, let’s face it, with a face like an angel no one notices that she’s only 5’1”, and even her freckles are lightly dusted across her face like an afterthought.

I guess surrounded by men my whole life, I just never found any enthusiasm for such feminine pursuits. I was the bane of my mother’s existence: her only girl was a tomboy. To this day she’ll remark on my appearance, “See, you look so nice when you wear make-up,” causing me to wonder if this is a thinly-vieled way of saying, “Girl, you need some serious artistry to compensate for nature.” My husband and I were going to a casual happy hour at the hospital during his first year of training when my mother stopped me, “Michelle, you’re not going like that, are you?” “Yeah, why?” I replied bracing myself for the inevitable. “Michelle!” she gasped, “You are a doctor’s wife!” I about died laughing. She must have figured that I needed to don A-line skirts and twin sets for the rest of my life (god forbid). I guess she also forgot that I’m a doctor too. Suffice to say that I am just not adept at the transformative options available to women for the purposes of enhancing the looks God gave them.

All this is not to say that I am above it all, because I am not. All the energy that I did not focus on my hair and make-up were funneled into efforts to transform my body. I actually spent most of my life string-bean thin. When I went to college, the guys couldn’t believe how much food could consume -- all 60” and 95 pounds of me. I ate two bowls of cereal and three donuts every morning for breakfast (I did eventually cut the donuts out of my daily diet, however). And we had to order extra pizza for me because I ate half a pie by myself. One night the cafeteria hosted a fancy dessert buffet. When I returned to my seat with 6 desserts, my friends Kevin and Stephen shared a distressed glance ,“You aren’t going to eat all that, are you?” Kevin asked. “Sure I am,” I replied, “It’s a special dessert night.” When I became lactose intolerant, the running joke was that I had already used up my lifetime supply of lactase, the enzyme that I was lacking.

But my lifetime of gluttony finally caught up with me in my twenties. Suddenly, I could no longer button my pants. I panicked; this had never happened to me. It didn’t take long for me to join the ranks of young women dieting and exercising obsessively. Before long it seemed like the more I tried to lose weight, the more weight I gained. I found myself vassilating between severely restricting my intake and bingeing. Since I couldn’t figure out how to make myself puke, I purged through exercise. I spent three years this way. I was so desperate to be skinny that I once wished that I would get sick so I could be thin again.

I have thought about that desperate wish over and over again. You have to be careful what you wish for: the fates are listening. Oh, they aren’t listening if you wish for something appropriate like, peace in the Middle East, but wish for something inappropriate like a deal-with-the-devil trade involving the loss of your health and they are all ears. Next thing you know, BAM, you are losing weight like crazy and feeling like shit. Before I got sick I weighed 113 pounds; two years later I weighed 95 pounds. I am now 81 pounds and my doctors are advocating a feeding tube so that I can eat while I sleep and gain some much needed weight. The irony is that woman will often remark on how lucky I am to be thin. I want to tell them how misplaced their envy is, that my body looks fine on the outside, covered in clothes, but that inside it is scarred and falling apart. It’s a sad statement on society when perfectly healthy women covet a figure that is the consequence of chronic illness. Trust me, I’d rather carry a few extra pounds. And I finally find myself staring at full figured women wishing that I looked so wonderfully Rubenesque. Ans as I struggle to meet the needs of my children when I am almost devoid of energy I realize that the ideal of the robust female body was a nod to the need for women to sustain not only their own lives but also the lives of their children well beyond pregnancy and infancy.

Scleroderma is disfiguring. When you open up to scleroderma in medical texts, you are greeted by a head shot of someone whose facial skin is so taut that they appear expressionless. Their lips are almost non-existent and cannot cover their teeth. As if this is not enough, the blood vessels on the face are usually dilated and give the appearance of red polka dots all over the face. In the early years of my illness, I was petrified by these photos. When I was diagnosed with pulmonary fibrosis, my parents flew out to California to stay with me. One night I cried in my mother’s arms as she rocked me back and forth like a baby. The weight of the disease, the new pulmonary diagnosis, and my grim future were so heavy, but the words that came out of my mouth were, “I don’t want to be ugly.” Even the fear of death could not overshadow the fear of being unattractive. “Michelle,” my mother chided gently, “Why have you always worried about this? Ever since you were a little girl. You’re not ugly, you aren’t going to be ugly.”

But the facial changes came nonethless. They were very slow at first but crept up on me over time. Now, when I look a pictures of the last decade I see the changes so clearly. My top lip is nearly gone and my smile is virtually non-existent. My face is covered with red blotches that have finally inspired me to master make-up. In my mind’s eye I still look like that voluptuous 25 year-old, but every morning an altogether different face greets me in the mirror. And now the chemo has thinned my hair as well. I have never looked worse. I am embarrassed by my appearance. Thank god I was not born beautiful because the fall to this state would have been a horrible one.

I want my old face back and I have a new appreciation for how cute I once was. No, I wasn’t as attractive as my brothers but I was attractive enough. I wish I had appreciated it more then. But in some ways the transformation seems appropriate as if the change in my outward appearance reflects the change in my outlook and my life and is a sign of all I have endured and overcome: it is my stigmata. I am no longer that 20-something girl that defined herself by her appearance. I am a women who knows, at the very core of her being, that outward beauty is meaningless and fleeting. And I know that my time is better spent being a better person than a more physically attractive one. My disease has delivered me from the tyranny of a looks-obsessed society. I cannot compete with models and movie starlets. I never could, but now I have an excuse to opt out of even trying. I have to be satisfied with my appearance because there is nothing I can do about it. I look in the mirror and realize, Popeye-like, “I am what I am” and that is good enough. Better late than never.

Friday, May 30, 2008

The Forks In the Road

Just wanted everyone to know that the tube is out. The removal was pain-free and we took advantage of the IV access to get me some fluids. I was a bit dehydrated.

I was an emotional wreck prior to the procedure because it felt like such a scary choice to make given how little I am eating. When the fellow came in to perform the procedure he clarified that there is not a current plan to do parental nutrition (via the bloodstream). When we confirmed this he probed further, "So this is a withdrawal of care," MD speak for "You've decided to die." He wasn't being nasty or anything; it's his job to ask these questions. We explained that the "next steps" were uncertain, but that the tube was too uncomfortable to remain in my system. The nurse and the fellow were wonderfully compassionate and gentle, making the experience physically very easy. When they were finished they asked if I needed anything else and I asked for a chaplain. With both Versed and Dilaudid on board I felt calm and I wanted to speak to someone while in this peaceful state.

The chaplain arrived and, like most chaplains I suppose, had an amazing air of peace about her. I told her that I felt like I was struggling so much because I always thought death would not be such a choice, that it would be out of my control. And, much to my surprise, I find myself faced with a series of choices that could hasten my death via starvation or potentially lengthen my life but carry a lot of additional suffering. I feel overwhelmed by the enormity of these decisions and the grim reality that there is no guidance except my own heart. And my own heart is so conflicted because I am afraid to suffer but I do not want to leave my children without a mother.

She reinforced to me many times that I have to make the choice for that is best for me. Multiple people have said this to me over the last week, one going so far as to say that the "Right choice for me is the right choice for everyone involved." It is so hard to trust that. It is so hard to know what to do.

I am reminded of my early twenties when I constantly engaged in what I called "One False Move" thinking. I was always afraid I'd miss that one phone call or party or whatever where my destiny lay and lose my chance at happiness. It was a ridiculous way to think, yet I spent years prostrate to this irrationality. And then my house burned down and I lost everything I owned in a matter of minutes. In the months following that loss, an enormous sense of peace settled into my life. I finally realized that happiness wasn't going to occur like some long-awaited event but rather already resided in me waiting to be set free.

So here I stand at the threshold of the end of my life, unprepared and scared despite all the forewarning. I keep thinking of Yogi Berra, "When you come to the fork in the road, take it." Yes, I must choose one way or another. What Yogi didn't say is "Don't look back." It's a recipe for misery to look at your past choices and think, "I should have done this; I should have done that." What's done is done. Maybe the chemo was a mistake; maybe the feeding tube was a mistake. Perhaps things would have turned out differently. But I made what I thought was the best choice at the time and hindsight is always too late by definition.

So where to go from here? I have no clue. We have calls in to both the parental nutrition folks and hospice care. We are gathering information for now. I have drank some cranberry juice and some orange juice so far. I plan to marshall the folks nearby who volunteered to help and ask them to make jello and pureed soups for me. I will do my best to eat and buy myself some time.

Soon I will go out to the patio and enjoy the sunshine on this glorious day. I will marvel at the Carolina blue sky, a sky that delights me as much now as when I first moved here from the gray Northeast. Then I will walk barefoot across my lawn, lush from the spring rains that ended our year-long drought. I'll smell the lavender and admire the lamb's ear that flourishes in the dry areas of our garden. I'll play fetch with Zara if only briefly. Then I will wait for the kids to descend from the bus and be grateful for one more day with them. And I will pray for peace and discernment and strength for all that lies ahead. Not just for me but for Bill and the kids as well.

Off to the Hospital ... Again

After much deliberation with pulmonology, gastroenterology, and rheumatlogy, we have decided to have my G/J feeding tube removed today. I have been horribly uncomfortable - intermittently unable to eat and never able to sleep - since the tube was placed in February. It is a ballsy move because all I have been able to consume by mouth for the last few days is some orange juice and raisins. I weighed in yesterday at 80.2 lbs fully clothed. Our hope is that I will feel better and more able to eat without the tube and that we can decide whether to try other options (being fed intravenously or having a J tube placed) in a week or so.

Bill leaves for Asia tomorrow. I cannot bear to see him go, but he cannot get out of the trip now. His sister arrives Sunday and will be with me for a week.

I am the most frightened that I have ever been in my life. Please keep me and my family in your thoughts and prayers.

At the end of my pulmonologist appointment yesterday, the doctor did not ask me to schedule a follow-up visit. That is never a good sign. If they don't ask you to return in 3 to 6 months, it is usually because they don't expect you to be around.

Over the next few days I plan to move a lot of my older writing to this site so that they are there. So there will be multiple posts once I feel up to it. Pace yourselves!

Thursday, May 29, 2008

Oh The Places You Will Go

My friend Jane lost her husband to scleroderma over two years ago. I have another essay about Steve that I will post today as well because he is someone worth knowing if only through my words and memories.

I emailed Jane last week and admitted to her that I was starting to fear that it was the beginning of my end. She came to visit with me a few days later, and we talked and cried. Our emotional pains are the opposite sides of the same coin: love. She bears the pain of the one left behind, and I bear the pain of the one who is leaving.

Her children are grown, and she just welcomed her first grandchild into her life. She has the gift of hindsight and can share with me things that only the mothers of grown children know. I told her everything I was doing to prepare for the children and how I was trying to give them everything I could to allow them to feel anchored even when I am gone.

Then she made the most insightful suggestion, “Tell them where to go to find you.” I didn’t get it at first, “How the hell do I know where they will find me?” The seed planted into my psyche I returned to it again and again over the next several days.

I reflected on the fondest moments of my life. As a child I loved “Sundae Night” when we would gather at the kitchen table and make monstrous ice cream sundaes. My dad would spray canned whipped cream on our noses while we reached for it with our tongues. Only my oldest brother, Anthony, was ever able to get it off without using his hands. My fondest grade school memories were lunches, which we ate in our classrooms because we lacked a cafeteria, followed by recess. And in high school I loved the after school hours I spent in the Student Council Office, especially my junior year when Amy Bozzi, Chris Klaster, my best friend Marie & I wrote the end of the year show. We ate a lot of pizza in that office and shared a lot of laughs.
As my memory marches on through time I am struck by how few “milestone moments” are among my fondest memories. One of my favorite memories of Bill is not our wedding but a day we went hiking in the Great Smoky Mountains. It must have been 95 degrees and we happened upon a stream. We took off our socks and shoes and immersed them in the clear, cool water. We even took a picture of our feet, side by side, and called it “Happy Feet.” Of course there are many more memories that bring me equal joy, but something about that moment crystallized everything about us as a couple: active, happy, spontaneous, and humorous.

I have had the great fortune to travel to many beautiful places. And again it is not moments beholding great monuments or scenic landscapes that spring to mind most vividly, but rather simple or funny experiences that happened along the way. When I was working as a consultant for the World Bank in East Africa, a group of us decided to take a safari to Ngorongoro Crater in Tanzania. My friend Marisol and I drank way too much coffee and finally had to ask the van driver to pull over so that we could pee. Mind you, this area is a grassland with nary a large bush or tree to be found. Marisol immediately began to pee on the side of the road while I ran off a little ways for some modicum of privacy. Mary, who we had already named the “Photo Slut,” took a picture of poor Marisol squatting on the road. I was watching this occur and thinking to myself, “Well I have heard of peeing your pants but never peeing while you laugh your ass off.” It remains one of the funnier memories of my life.

My memories of the children are far too many to mention. I remember Amelia running on Berkeley’s campus in her first pair of shoes: little Nikes with a pink swoosh. I remember the way Aidan always hummed to himself in the car and how he and I napped everyday together after he nursed. I remember hiking with them though Duke Forest: Aidan on my back, Amelia by my side, and Watson on his leash. I remember learning to watch Aidan endanger himself on playground equipment, trees, major appliances and to hold my breath and my tongue, trusting that he knew what he was doing. I remember my eyes welling with tears the first time I watched Amelia perform on her violin; there is something magical about children making music.

There are so many places and moments that I would love to return to for just a minute. I would love to touch the newborn versions of my children just one more time and inhale their otherworldly scent. I would like to sit and lunch once more on the Champs des Mars with Aidan and Amelia with the Eiffel Tower in the background, Aidan chomping on a baguette and Amelia on her pain chocolate. I would like to picnic in the backstreets of Venice once more with Bill and the kids before boarding a ferry to Murano. But mostly I would like to dance with them again in my bedroom and wish the moment could last much longer.

Of all my many fond memories, one stands out. The July after we retuned to North Carolina from living in California for 3 years, we went to the Festival for the Eno. It was insufferably hot that day and the children were growing restless for their naps. We found an open space near one of the sound stages where a band was playing blue grass music. We settled down onto our blanket. Aidan lay next to me nursing and drifting off to sleep. Beside him lay Amelia with her chubby cheeks facing me. Bill lay on the far side of the blanket. Beneath the elms it was cool and comfortable. I thought about these children, these blessings. I thought about how I had breathed life into them, even with my sick lungs and how they now breathed life back into me with their very existence. The trees and I played peek-a-boo with the sun and the breeze flowed over me. It was the most perfect moment of my life.

So that is where I will tell them to go. I’ll be at the Eno and everywhere else I was ever happy. But I want them to know that I will be wherever they are as well. When they are happy, I will be sharing their joy. When the tears fall, I will be there to hold them and wipe the tears away. I will be there to listen to their angry shouts and feelings of doubt. They may not see me but I will be there somehow.

Teacher's Last Lesson

Originally written in 2007

Steve was a retired high school business teacher who had recently moved to North Carolina in search of a warmer site for his retirement years. I met Steve when I was leading the Triangle Scleroderma Support Group. Scleroderma is an uncommon, life-threatening, autoimmune disease that generally strikes women. Steve was one of its rare male victims. He had been lured to our support group by my co-leader, Theresa. To be more precise, Theresa lured Steve’s wife who initially dragged Steve to our meetings all but kicking and screaming. Support group attendance does not seem to come naturally to most men, but with the presence of a veteran teacher, Steve soon became a vital force at our small gatherings. Shortly after he joined the group, it was hard to imagine it without him.

I have met many people with scleroderma and most of us share facial characteristics that set us apart. Our taut skin virtually eliminates our lips and leaves our mouths very small. The skin can become so tight that many victims seem expressionless, sort of like an actress who’s gone overboard with Botox injections. Many of us also have small dilated blood vessels that dot our faces. At the time I met Steve, I had met about 50 people with scleroderma, but I had never seen scleroderma ravage anyone’s appearance the way it had altered Steve’s. Steve had so many dilated blood vessels that he appeared to have deep red polka dots all over his face. One of his favorite stories involved a transfixed little boy. After tolerating the child’s blatant stare for several minutes, Steve raised his fingers to his face and pretended to pluck off one of his “dots” and throw it at the little boy who subsequently fled to his parents, screaming all the way. A strong sense of humor was his favorite defense against his illness and all its complications. At the repeated suggestion of another member of our support groups, he finally incorporated yogurt into his diet to battle his gastrointestinal problems. When another member suggested that he take up yoga, he wryly replied, “Only one new “y” word per year ladies.” He was always ready with a joke and an encouraging word.

Shortly after we met, Steve developed pulmonary hypertension. He received exceptionally good medical care that capitalized off of the increasing availability of drugs aimed at managing this condition. For two years, Steve battled his disease on every front. He followed his medical regimen religiously, enrolled in a pulmonary rehabilitation program that involved 3 hours at the gym every day, and maintained an infectiously optimistic outlook. Despite his dependence on oxygen, he lived a fairly full life and enjoyed his retirement years with his wife, Jane. Then Steve began to falter. His gastrointestinal problems worsened and led to frequent hospitalizations. His lungs were failing and he was developing heart failure. Within months, he began to require a wheelchair and rarely ventured from home. The end of Steve’s life was clearly drawing near.

I had talked to him before Christmas and he was in good spirits. We shared our usual gripes about physicians and he repeated his favorite joke that they were all just “practicing.” He was looking forward to enjoying the holiday with his children and their spouses. Three days after Christmas, Steve was hospitalized for gastrointestinal problems. I assumed that it was going to be like his previous admissions, which lasted only a couple days and ended in a discharge to his home. I asked my husband to stop by after he saw his own patients, but thought little else of it. When my husband arrived home that night, he pulled me into the living room, out of the earshot of our young children. “You have to go see Steve tonight,” he stated calmly, “he’s not going to make it until the morning.”

When I entered the patient unit, I passed the waiting room where Steve’s family was eating their dinner. Their eyes were red and their grief palpable, but they were coping. “It was so nice of your husband to come,” his daughter-in-law said, “He was like an angel. He just made sure that we understood what was happening and that we were all on the same page.” They were starting to accept and, given Steve’s suffering, embrace the inevitable. But their sadness over losing this wonderful man was raw.

Steve was mental presence was not readily apparent when I entered his room. Jane told me that earlier in the day he had groused, “I don’t know how to pass over.” Perhaps he was en route already. I held his hand and told him what a privilege it had been to know him and how grateful I was for his friendship. I stayed for a few moments with him until Jane returned. When he heard her voice, his eyes darted from side to side. “I think he knows you’re here,” I said. She went to him and I left them to each other. Looking over my shoulder as I left the room, I watched her coo at her dying husband like a smitten adolescent. I felt like a voyeur but I couldn’t tear my eyes away from this particular love scene.

Steve died at 3:00 am on December 31st. On the day of his funeral, the church was filled to capacity. Not a bad showing for someone who moved to the area only four years prior. He had touched so many lives. A physician who had cared for Steve in his final months wrote a letter that was read at the service. In it he stated that Steve’s willingness to participate in medical research was one of his greatest legacies. But as I looked around the crowded church, it occurred to me that Steve’s greatest legacy was that he never allowed the disease that ravaged his body and his appearance to change his heart and soul. His spirit escaped completely unscathed. That was what drew all of us to him. Even though he lost his physical battle with scleroderma, he won the emotional war. He made us all feel like that was possible.

Wednesday, May 28, 2008


I have a rich and varied dream life these thanks to my frequent nightly awakenings. Bill and I have a running joke that I could have never been successful in advertising; I am far too honest and blunt. Last night I had a dream that confirmed Bill’s assessment in the funniest way possible.

Ever since I started the tube feedings I have had trouble with bloating. This is a new thing for me because I have never been much of a meat eater and beans are not, for me, a magical fruit. It took me almost a month to discover that taking simethicone about an hour before bed took the edge off and allowed me to sleep more comfortably. My only previous experience with simethicone was the day after we brought Amelia home from the hospital. She was screaming her head off, and I sent Bill to the 24-hour pharmacy for simethicone drops. When he returned home he told me the cashier had finished off the transaction with the usual, “Have a good night.” Bill responded, “It’s midnight and I’m buying infant gas medicine; I am NOT having a good night.”

In my dream last night I was watching television when a commercial for adult simethicone cam across the screen. In it a series of people were farting and laughing until the screen was full of hysterical flatulent people. I must have woken soon thereafter because the dream was so fresh in my mind. It was like an advertisement for happy pills gone awry. I had this mental image of some well-dressed Madison Avenue types pitching the commercial to a group of stunned and appalled pharmaceutical executives. And I sat there in my bed and giggled my head off. What a great way to start the day!

I realize now how much our mind is in tune with our bodies. I always have to pee in my dreams right before I wake up and have to race to the bathroom. Maybe it‘s the power of suggestion or maybe my brain just keeps me from peeing the bed! Now if I could just get my inner physician to figure out a few other things I’d be all set.

The funny thing about my dreams lately is that they are rarely sad or frightening. If anything they are pleasant and filled with people I have met throughout my life, both lead characters and bit players. I dream often about people that I have not seen in 25 years. I mentioned this to a therapist and said I wondered if it was a way of saying “Good-bye.” She suggested, instead, that it was a way of marshalling support from everyone, everywhere who had meant something to me how ever long ago.

I’m sleeping a little better now thanks to Xanax. I still wake up after 4 hours, but I am able to fall back to sleep for usually another 3 or 4. Hopefully I will eventually get 7 hours straight someday. I am always so grateful for the end of the day and for rest when it comes. I crave my cozy flannel sheets and cotton blanket pulled up to my chin. I like the feeling I get just before I drift off, “Ah, here it is, sleep. Welcome.”

Tuesday, May 27, 2008

One Fine Day

I know someone has made a nice living from a series of books on “Not Sweating the Small Stuff,” but, at this point in my life, it’s all about the small stuff. I have learned to accept that I am on a roller coaster ride and that every day and, sometimes, every hour is different. I have accepted that nothing is a given and that all I can do is live in each particular moment.

Yesterday I awoke at 8:30 after having slept in two blocks: one lasting the usual three hours and the other lasting 5 hours. The latter block was the first time I have slept more than 3.5 hours straight since the feeding tube debacle started in February. I felt like a different person. I proceeded through my usual morning routine: meds, fresh glass of water, and a glass of juice. I cannot eat breakfast anymore. I don’t know what happened when they put this tube in, but I have been unable to stomach breakfast ever since. Friday I tried to eat a bowl of oatmeal and I had about four bites before I nearly hurled. My new “Breakfast of Champions” is a can of Vivonex RTF [ready to feed] through my feeding tube.

I started my tube feedings and skimmed the New York Times while Amelia read her latest Nancy Drew. She is now breezing through them at a rate of one book per day. Aidan was busy with the 2006 Guiness Book of World Records. After a while Amelia set off to find a playmate. It’s wonderful for her to be at an age where she can just go off in the neighborhood and find something to do. She likes that she gets to bring my cell phone with her on her outings. Can you say pre-teen?

Aidan chose to stay behind with me and play Dominoes. We play a Dominoes game called “Mexican Train,” which surely is a moniker left over from pre-political correctness days. Since just two of us were playing we wiggled the rules a bit to allow us to both play two trains at once. Aidan has always had remarkable spatial abilities. When he was 3 years he had a bucket filled with plastic dinosaurs and the makings for a dinosaur habitat. He used to line them up on his headboard: dinosaur, tree, dinosaur, tree, dinosaur, tree, and so on. The only reason I knew this was remarkable is that they were teaching Amelia’s kindergarten class patterns and not everyone was catching on readily. We played two games of dominoes and I played the same way I would with Bill or anyone else. I did win, but both times Aidan only had one tile left at the end of the game. Once Aidan watched my Dad playing Dominoes. Aidan had initially decided against playing, but he took one look at my Dad’s mess and climbed into his lap, “Pop-pop, you have to have a strategy.” He then proceeded to line up the Dominoes in the order they should be played.

While Aidan and I were playing Dominoes I noticed I was feeling pretty good. I promised Aidan that I would take him to Borders to use the gift card my friend Kate had given him the previous day. While we waited for my feeding to finish we watched the bonus animated short on the Madagascar DVD. It is so much funnier than the actual film. We watched it twice and I enjoyed listening to Aidan’s belly laughs. When do we outgrow that childhood laugh and why? It is the most joyful sound in the word.

So I finished up my second can of formula, unhooked myself from the feeding pump and dressed. Aidan went to fetch Amelia who was playing with her friend Caitlyn. We invited Caitlyn along and she ran home to get permission. Her father Dave, later told me that she asked if she could go to the border with me. I had this mental image of Dave scratching his head and thinking, “Geez, I know things are bad but I don’t see how a trip to Mexico is really going to help.” Once Dave confirmed that I wasn’t contemplating some sort of expatriation scheme, I piled the kids into the Saturn and we were off. The children were so happy to be out and about with me that I could almost feel the joy emanating from the backseat. I could almost hear them thinking to themselves, “Maybe Mommy is getting better.”

We successful spent all our Borders gift cards with a minimum amount of fuss and haggling. Amelia bought more Nancy Drew books and Aidan added to his collection of superhero and Pokemon stories. I find the greatest challenge of mothering a boy is mustering feigned interest in their passions. It’s so easy to engage Amelia in conversations about Nancy Drew because I loved those stories as a child myself. Of course, Amelia’s idea of plot summarization involves a 30-minute discourse, which can grow a little tiresome. But I still prefer that to Aidan’s convoluted descriptions of which Pokemon does what and why.

Once we returned home the kids got ready for their afternoon at the lake. My friend Sally had nicely volunteered to take them for several hours so that Bill and I could have some time to ourselves. I was impressed to watch the kids get their bags ready with towels, clothes, and sunscreen. Aidan even got Amelia a towel without bitching about having to do it. Soon they were off.

I took a leisurely shower. I discovered recently that if I sit on the floor in front of our full-length mirror I can actually dry and style my hair and put on make up without feeling worn out afterwards. When I went downstairs Bill greeted me warmly, “You look really nice.” Of course, he always says that, leaving me to question if he really has 20/20 vision. But on this particular night I actually felt like I looked presentable for the first time in months.

For the past several months Bill and I have had little leisurely time together. After the hospitalization we needed a steady stream of visitors to help with my recovery and running the household. Consequently, privacy was completely lost. In the few private moments we shared, our conversations involved my illness and what to try next. Our entire lives seemed to revolve around my health concerns and trying to maintain some semblance of a normal life for the kids. We literally had not simply enjoyed each other’s company in three months.

For our inaugural date, Bill and I had decided to see a movie just in case I was not able to speak. He lobbied unsuccessfully for the latest Indiana Jones. Not to be agist or anything but men on Geritol should not be playing action heroes. At some point it is time to get a new gig. Plus, Harrison Ford has never done a thing for me even in his Han Solo days. I was too tired to look for a movie so we went with Bill’s second choice, “What Happens In Vegas.” It turned out to be a sweet albeit mindless romantic comedy, which was exactly what I needed. I have enough drama in my own life without paying eight bucks to see made-up drama.

After the movie I was still feeling well. I really needed to go home to finish my tube feedings for the day, but I wanted to be out with Bill like a normal couple. So we went out for dinner. My cough was at a minimum and I was actually able to talk. And we talked and joked like we used to do, laughing about our overly solicitous waiter and other random things. Humor has always been the mainstay of our relationship and it has been harder and harder to find it over the past few months. It felt so good to laugh again. It was just like old times. At one point he looked at me across the table with wet eyes, “It is so good to have you back.”

On the way to pick up the kids I had a coughing fit and threw up. It was one half hour of misery in what had otherwise been a perfect day, and I tried to think about it that way. I can handle 30 bad minutes in exchange for 12 good hours.

Amelia went off to a late night movie viewing at a friend’s house and I pictured her laying on her belly head propped on her hands with her legs swinging, pajama party style. There she could be like any other girl, a girl who doesn’t have a sick mommy. Aidan read me his new books before I tucked him into bed. We snuggled together for a good twenty minutes and I nuzzled my nose against his little head. Then, I got into bed and Bill tucked me in. He sleeps in the guest room these days while I try to get my sleep situation under control. That way only one of us is perpetually sleep deprived. He kissed me good night and said, “I love you.” I wasn’t able to speak so I answered him back in American Sign Language. I thought back on all the nights we fell off to sleep without saying those words, and now we never ever forget to say them.

I said my prayers and I thanked God for all the wonderful parts of the day: dominoes, Pixar penguins, bookstores, holding hands, laughter, friends who know exactly how to help most, parties for little girls, and snuggles with little boys. I even thanked God for Asthon Kutcher for being sweet and endearing in a way that exceeded my expectations. And I thanked God for Bill who can see me underneath all my symptoms and suffering and have faith that I will one day be myself again. As I fell off to sleep I felt the corners of my mouth turned up in a smile; I was happy and just a little hopeful that someday it’s all going to be ok again.

Saturday, May 24, 2008

Uncle Snowy

Until recently my father thought he was the 7th of 9 children. As it turns out, he is the 8th of 10 children. My grandmother had a son named John who died as an infant and, apparently, never spoke of him again. She later had another son and named him John as well. He died at the age of 9 from meningitis. The loss of children and parents was not at all uncommon in the poor ethnic enclaves of Philadelphia back in the 30s and 40s. My mother also lost a sibling and my aunt lost a newborn son. When my parents talk about the characters that figured prominently in their childhoods, it seems that most every family lost a child or a parent prematurely. Grief came to each life early and predictably like any other emotion.

While my father’s family lacked financial and material comforts, they seemed rich in companionship. He and his siblings were close and loving with each other. This was especially the case of my father and his older brother, Snowy. Snowy’s real name was Anthony, after my paternal grandfather who modified his Hungarian Anton to its American version upon his arrival in the States. When my uncle was a baby someone looked at his fat body and platinum-covered round head and said, “He looks like a Snowball” and it stuck. He was Snowy for the rest of his life.

In the kitchen of our tiny row house we had a large rectangular table surrounded by 8 chairs. My immediate family filled 7 and, for much of my childhood, my Uncle Snowy occupied the 8th chair. He was very much a part of our lives.

In my mind’s eye he was a big man in a handsome camel coat. But he could not have been tall; the Mayer family is a tiny clan.
At my brother’s wedding I caught a glimpse of my father and his siblings together and started laughing. They looked like a reunion of the Munchkins from the Wizard of Oz. Snowy was happy and playful and doted on me endlessly. “Mares eat oats and does eat oats and little lambs eat ivy. A kid’ll eat ivy too. Wouldn’t you?” he would sing to me over and over to my delight. He took me shopping at the fancy department store nearby and laughed at my ability to find the candy section despite his attempts to lead me away. There he would buy me a box of chocolate covered cherries. I would greedily unwrap one and shove it in my little mouth and feel the utmost delight as the sugary center erupted and flowed out the corners of my mouth. He took me to Philadelphia’s finest restaurants and spent Sundays walking with me down the “Avenue,” the main shopping area in my childhood neighborhood. We picked buttercups together in the park. He was mine; I was his. I loved him with all my heart.

When I was in fifth grade Uncle Snowy had a massive stroke. While he survived physically and cognitively, he was never then same emotionally. It was as if his spirit had drained out of his limp and lifeless left side.

He lived with us for a while after the stroke. One day my mother asked me to do his physical therapy with him, “He won’t do it for anyone else; he will do it for you.” He was supposed to nest Styrofoam cups together with his left hand. And he tried. But he quickly grew angry and frustrated and gave up. I tried to encourage him while choking back my own tears but I felt overwhelmed and, I think, I ran away from him. That day is my last memory of spending one-on-one time with my beloved uncle.

Snowy lived for 6 years after his stroke but he was never the same man. His failing body prevented him from enjoying many of his favorite activities. He was no longer joyful or playful. And he never sang about mares and oats again. My pre-teen self didn’t know how to relate to this version of my uncle and, I fear, I abandoned him when he needed me most. But I could see that he didn’t want to go on living. Uncle Snowy was merely a ghost that had not yet passed into the next world. And I didn’t know how to love a ghost.

Last night I was lying in bed, waiting for sleep to come. I kept returning to this image of me as a young child. I was sitting by the back door in our basement, staring out at the pouring rain and crying hysterically, “Come back. Come back.” I remember that day vividly. I had been so rude to Uncle Snowy, preferring the TV to his company. After he left I thought I had hurt his feelings and I felt so guilty. I wanted him to come back so I could say that I was sorry.

I haven’t thought much about my Uncle Snowy in years. Thoughts of him creep in from time to time, but I haven’t really revisited my memories of him. Last night I realized that he was the first real loss in my life. But I lost him long before he died. Those years between the stroke and his death were so painful to witness and, I imagine, painful for him to endure. His spirit had given up on living, but his body couldn’t let go. And we all orbited around him like satellites that refused to venture too close to a dark and gloomy planet.

Perhaps it is the memory of Uncle Snowy’s lingering that scares me so. From the outside, that long good-bye seems undoable. How do you endure a suboptimal existence while watching the lives of others unfold in far more favorable fashion? It sometimes seems like an insurmountable feat of adaptation: learning to love a life that you have neither chosen nor desire.

I wonder what Uncle Snowy would tell me now. Should I go eat some chocolate covered cherries? Pick buttercups the woods? I can still do those things. They brought me such joy at age 4. Are they enough at 40? Can I learn to be happy with less and give myself the chance to experience more? I think I can, I think I can, I think I can.

Thursday, May 22, 2008

The Lesser Commandments

Lately I find a profound need to go to Mass every Sunday. My spiritual side pulls me through the most difficult moments and Sunday Mass is like a booster shot for my fragile spirit. The first time I returned to Mass after having the tube placed, I went alone. I knew that I would not make it through the service without decompensating, and I did not want to subject the children to that experience. I entered the church and searched out my friend, Donna. She happens to have four kids; I guess I didn’t think about the fact that I would be decompensating in front of her kids rather than mine. Still, I’m not their mother. I eased into the pew next to Donna and took a deep breath, “I’m here.”

The gospel that day was about the Road to Emmaus when the resurrected Christ joins two disciples on their physical and emotional journey in the days following Christ’s death. The disciples do not recognize their companion nor do they realize that they are not where they need to be. When the priest gave his sermon he spoke about how we all think we know what journey we are on. We are all so confident that we know our destination, but that we usually don’t have a clue. As he spoke my limited control over my emotions gave way. And I cried in Donna’s ready arms.

These days I’m really into PDA. No, I am not talking about public displays of affection. I’ve decided the acronym could be used more widely. It can serve its originally intended purpose, especially helpful in Paris, the motherland of PDA. Or it could stand for public displays of agitation, especially helpful in Italy where the most mundane conversations engender passionate expression. Or, in my current situation, it can stand for public displays of angst. I cannot count the number of times over the past 4 months that I have publicly dissolved into a tear-stained, snot-laden mess. I don’t even try to stop myself anymore. Instead I take a boy-scout approach: I prepare. I no longer wear make-up or contacts if I think there is the remotest possibility that I might cry. This, of course, means that I no longer wear make-up or contacts period. My purse and car are filled with tissues, and I steal tissue and toilet paper everywhere I go. And I’m starting to understand why old men don’t cut those hairs that grow out of their ears. They know it’s there. The just don’t give a crap. And I don’t give a crap about roving the streets of Durham looking like some escaped mental patient. I still prefer not to wipe snot on my shirtsleeves, but, hell, I may let go of that soon too.

But I digress. I was in church.

Donna got me through that first service, and I have returned each week. I keep looking at Christ on the cross and thinking to myself blasphemously, “I’m right there with ya, buddy.” But then I really think about it and I wonder, “Isn’t that the point?” The story I was told in Catholic school, as I sat there in my hideous plaid jumper, was that he became human so that he could suffer as we do. So why was everyone so pissed when Madonna hung herself on the cross? Aren’t we supposed to see our suffering in the savior? I swear that cross is what keeps me coming back every Sunday. When I look at the cross I do not feel alone. I feel like I can hang, so to speak, for another week.

This past Sunday we went to Mass as a family and sat in back of a young pregnant woman. Our pastor has a thing for incense that I borders on pathologic. I swear he is out to kill every pulmonary patient in the building. Before the first reading I am usually barely breathing. Every time I coughed the pregnant women glanced in my direction as if I was spewing TB into the air. “Alright lady, I get it. You are about to pop that kid out any second, and you don’t want to get sick.” I tried to get a hold of the cough but could not. So I went to the narthex, the entry area of the building, and sat on the floor.
Before I returned to the church, I washed my hands in anticipation of the sign of peace. As soon as I returned, the glances began in earnest. These were not, “Oh, you poor thing” glances. These were, “Why are you out in public spreading your germs” glances. I felt like a leper. “Lady,” I thought to myself, “you’re in friggin’ church.” There was not an ounce of compassion on her face. And then, the pièce de résistance, she took out the hand sanitizer after the sign of peace. I wanted to hoc a loogey into her hair.

I reviewed the 10 commandments in my head. “Nope, no ‘Thou shalt not give dirty looks to sick people’ on the list.” Could this fall under keeping the Lord’s day holy? I didn’t think she was acting very holy. Of course, I wasn’t feeling very holy myself. I kept trying to think about my mindfulness practice and send her “loving kindness.” But, really, I wanted to smack her upside the head. And, surely, that is not in keeping with the holiness of the Lord’s day.

Thankfully she left after Communion and I could enjoy the last 10 minutes of the service in peace. On the way home I mentioned the woman to Bill. Men usually don’t pay attention to all the non-verbal bullshit that happens between women so I was not expecting him to have noticed anything. “What was her problem?” Bill replied. “I think I need a button that says ‘Lucky for you, my cough isn’t contagious’ so that people don’t look at me like I am the Grim Reaper,” I laughed. But I’m really starting to think I should add the button to my list of things to do.

I wonder if God sits in heaven with his hand on his head and wonders, “Where did I go wrong?” That’s the way I feel when the kids leave their dirty clothes on the floor. Do I have to tell them to put it in the laundry? Isn’t it obvious that the dirty clothes will not walk themselves into the washing machine (and, for the record, I do not pick up after them and never have)? Why do I have to say it even once, let alone every other day? And, when I tell them to wash their hands, why do I need to remind them to use soap? Isn’t all of this common sense?

And isn’t it obvious that one should treat a sick person with kindness rather than disdain?

I picture God in heaven, plagued with self-doubt. “Should I have given them 20 commandments? Perhaps I wasn’t clear enough. They seem to be having a hard time working from the general to the specific. Like the whole false gods thing, they don’t seem to realize that it extends beyond statues. Does anyone even worship statues nowadays? They probably think that commandment has been retired. I thought I made it so simple: Love me, love each other.” And like all parents, I imagine that he wonders where he went wrong.

As for me, I keep trying not to send evil thoughts in the direction of the pregnant woman. Somehow I don’t think God looks favorably on prayer requests involving the infliction of pain and suffering. But the Philly girl in me wants to give her a serious piece of my mind, but that would never do in the “southern part of heaven.” So I keep telling myself, “Let it go, Michelle. Let it go.”

Tuesday, May 20, 2008

Of Whom I Am So Proud

During the first Friday of Spring Break my senior year of college, I boarded a plane bound for San Diego with my college beau, Pat. He and I had dated since our sophomore year and planned to spend the break taking our first vacation together. Our trip started with a visit to his mother in San Diego and, from there, we planned to drive up the Pacific Coast to San Francisco and then over to Yosemite. The day after we arrived his mother hosted a birthday dinner in Pat’s honor. Pat and I were both very young college seniors neither of us becoming “legal” until our spring semester. In his birthday card, underneath the canned Hallmark verse, his mother wrote, “Happy 21st Birthday to a son of whom I am so proud.” I remember reading those words and my eyes welling with tears. Surely the intensity of my reaction reflected my own love for Pat at that time, at least in part. But more likely it was the true meaning of those words that overwhelmed me. She wasn’t saying that she was proud of him for doing this or that. What she was saying is that she was proud of the person that he was. She could see the wonderful man that she had raised and know that she was sending a good human being out into the world. I do not know how Pat felt about those words for I never asked him, but I suspect that it was an enormous gift to know that that his mother thought so highly of him.

I was thinking of her words again a couple weeks ago. Bill’s mother shipped his birthday present and card via USPS and it arrived on time as always. The box contained some desperately needed new clothes and a note acknowledging that she knew he needed new clothes but had no time to shop for them. A few days later I saw the card lying on the floor. When I opened the card and saw the signatures, I felt a little sad. I wanted so much to see someone tell Bill how proud they were of the man he has become. I know the absence of the words doesn’t mean they aren’t felt or believed, but I wanted so much for Bill to see, in black and white, an acknowledgement of the wonderful man that he is.

My illness has made me so mindful of not leaving things unsaid. When we are children we are taught that words are not powerful: “Sticks and stones may break my bones but words can never hurt me.” How untrue. I do not know if the pen is mightier than the sword, but I know that words have the power to heal and hurt, comfort and agitate, build and destroy. And yet we are so generous with hateful speech and greedy with our kindest thoughts and feelings. Perhaps the vulnerability that is inherent in truthfulness is more than we can bear. To admit our love and admiration for another leaves us open for rejection. And rejection breaks our fragile hearts. Or maybe we just assume that people know how we feel.

I suppose given my Italian heritage I was always comfortable sharing my feelings, wearing them openly on my sleeves, pantlegs, coats, etc. I was voted “Most Emotional” in my senior class and it wasn’t an originally listed category. People added it in at the bottom of the page. Aidan’s developmental pediatrician suggested I needed antidepressants when my eyes welled after he suggested Aidan’s might have ADHD. “Antidepressants?” I thought to myself, “I’m not depressed. I’m Italian; we emote.” I come a family that lets it all hang out, perhaps a little too much. Now that I have lived away from my family for over 2 decades, I get a little overwhelmed by all the simultaneous emoting that takes place at the Sunday dinner table. Bill’s family, Mid-western German stock, tends to keep things inside. Perhaps that’s why Bill and I were attracted to each other; he’s the yin to my yang.

At times I think Bill regrets choosing such an emotive partner. He once told a marriage therapist, “I wish Michelle wouldn’t cuss at me when we fight.” The counselor laughed at him, “Yeah, that’s not going to happen. You married her because she has all the fire that you don’t. She laughs hard, cries hard, and fights hard. You cannot ask her to change that now.” I’m a little too quick with the tongue-lashing, but at least I am generous with kind words as well. And thankfully Bill is more reserved; I cannot imagine a marriage made from two people with my disposition.

As I sat looking at the card I felt this overwhelming need for someone to tell Bill what an incredible human being he has become. I met Bill when he was 23 years old. And, like most 23-year-old American males, he could barely take care of himself. The bathroom in his apartment was the perpetual site of a microbe orgy. “You know, the pink ring in the toilet is not decorative,” I would remind him. In those days, Bill could spend $100 at the grocery store without buying a single food that I considered an ingredient for dinner. But what Bill lacked in innate skills, he made up for in openness to suggestion. Over the years, he learned to eat better and clean better. He may not do everything to my exacting standards but he does them well enough.

When we first started dating Bill wanted to make me a cake for my birthday. He called his Aunt Mary Jean on the phone, “Mary Jean, what does it mean to ‘fold’ the egg whites into the batter?” Mary Jean later related the story to Bill’s mom and said, “He must really like this girl.” This past Saturday I asked Bill to chop some rhubarb that I had purchased a week before. I wanted to make a cake before the rhubarb spoiled. But I spent all my energy making a pot of chili. “If I give you the recipe, can you make the cake?” I asked. He happily agreed and an hour later I pulled a delicious cake out of the oven. He has come so far.

Of course he isn’t perfect. He works too hard, and doesn’t take care of himself enough. But as I watch him these days (and I spend a lot of time watching life from the sofa), I’m amazed by him. He shoulders so much without self-pity or complaint. He humbles me daily with his goodness. I used to think, obnoxiously, that he was lucky to have me. He always seemed so simple, like such a young soul on its first time out. I felt like I was teaching him about travel, food, and culture. But now I know that I am the lucky one. Of the two of us, he is the far better human being. I don’t know that I could have cared for him with such love, compassion, and patience had the situation been reversed.

A few days after his birthday I sat with him in the living room. I told him about my experience with his birthday card. “I just wish someone would tell you that they are proud of you,” I sniffed. “You are a really wonderful man and I want you to know that. I want you to know at the core of your being that you have done everything you should do.”
I don’t know how to tell him how I feel. I don’t know how to tell him how much I admire him. How do you put into words the feeling that comes when you look at someone and your heart feels full and warm and settled all at the same time? Do we have a word for that?

The words of Pat’s mother never left me. For 18 years they have floated in and out of my mind. I don’t know why they were so important to my naive 21 year-old self, but I realize their wisdom now. They say everything. And to my husband I know of no better summation, “You are a man of whom I am so proud … to know and love.”

Saturday, May 17, 2008

Finding My Religion

Originally written March 20, 2008

We enter the dark sanctuary of Stanford’s large chapel and I am immediately struck by its gilded ceilings and marble altar. While the décor is beautiful it seems baroque compared to the understated facades of Stanford’s Mediterranean style buildings. And it is a far cry from the hippy-style Newman Center that I left behind in Chapel Hill. We enter a pew towards the back of the church and I gratefully settle into the hard wooden bench. My mind and body are still reeling from a cross-country move completed only a few short days ago. Bill begins his pediatrics residency in a few weeks and I start a new job as well. We are excited at the prospect of starting our life together in our new home, but I feel overwhelmed by yet another change in my life – one too many in what has already been a long year.

Midway through the Mass, my eyes begin to tear. I have no idea what sets me off – the music, the setting, the awareness of my very fragile faith – soon the tears roll down my cheeks uncontrollably as Bill looks on bewildered. It is the second time in a week that I have fallen apart in a place of worship. I have been sick for 18 months and I am filled with anxiety about my future. Now when I enter a church I feel intensely lonely and abandoned. I find no solace here, surrounded by healthy college students anticipating their bright futures. While many of them are likely praying to ace their upcoming exams, I cannot even find enough faith to pray for my life. For the past 6 months, I have not felt like I can ask for God’s mercy. “My God, my God why have you abandoned me?” I think. But I don’t want to utter these words. I have no right: there are so many people in the world far sicker than I am. And my faith is so feeble that I feel like a fair weather friend running to God now that I need him. I don’t want to be a hypocrite – doubting God’s ability to intervene in our lives and asking him to do so now that I am desperate. And so my tears fall as I stand here helpless before God.

A week later I fall to pieces standing in the Sonoma Mission. The sanctuary, devoid of pews and completely unadorned, has none of the grandeur of Stanford’s church. There is no priest or choir, no prayers or hymns to touch my heart – just me and my husband in an empty room. The tears race down my cheeks and once again my stoic husband looks at me quizzically, wondering why I am suddenly so labile. Even with him present, I feel completely alone. My illness has given me a sense of isolation unlike any I have ever known. Intellectually, I know there are other young adults facing their mortality, but I don’t happen to know any. So it feels as if no one could possibly understand the mix of emotions that have taken up residence in my heart. While my husband certainly endures the ups and downs of my illness, the fear of being left behind differs vastly from the fear of leaving before I am ready.

I cannot help but notice that I have fallen apart three times in less than 2 weeks in three different places of worship. My faith is so worn away from years of higher education, a logical mind, and simple doubt. My head has no need for God, but my heart wants the blind faith of my childhood desperately.


I am a cradle Catholic, raised by a devotedly religious mother who attended daily Mass for much of her life. As if my mother’s indoctrination was not sufficient, I also attended 12 years of Catholic school in the Archdiocese of Philadelphia. In fact, that still was not enough for my mother. The summer after third grade, she even sent me to CCD classes where the public school kids went to learn about the Catholic religion. On the first day of CCD, we learned the 10 commandments. I was already well-versed in the ten commandments by this time and I remember putting my head on the desk and thinking that it was going to be a long summer.
Falling away from faith was a gradually process. A began questioning religion at an early age. When I was in third grade, my teacher drew three large circles on the blackboard. She colored one in with white chalk. She also colored in the second circle with white chalk and left a few dark spots. She left the third circle black. “Boys and girls,” she began, “these three circles are like souls in different states of grace.” Apparently, the pure white circle was a soul without sin. The soul with a few black spots was a soul with just some venial, or minor, sins, like lying to your mom. The last soul was a soul with the dreaded mortal sin, such as missing Mass. The teacher than assured us that if we were to die with our soul in such a state that we would, indeed, go directly to hell with not so much as a pit stop in purgatory. This is how Catholics teach “the fear of God.” I sat in my desk and pondered this newly imparted bit of wisdom. I raised my hand, “So you mean if you have been a good person your whole life and you happen to get hit by a car on Monday after missing Mass on Sunday, you are going to hell?” The teacher assured me that, under such a scenario, the lifetime of good behavior was of no relevance. Had I known the word “bullshit” at that point in my life, I feel certain that I would have uttered it under my breath.

It did not end in the third grade. Throughout my Catholic school experience I was taught similarly outrageous things. In my freshman religion class, our instructor, an ancient nun who probably went into the convent at age 13, informed us that we were responsible if our parents divorced. Someone raised their hand and asked, “What if you were a baby when they divorced.” “Well,” the little nun replied, “You must have cried too much.” Truth be told, my freshman and sophomore religion classes were more like comedy hours. I have long since forgotten the name of the nuns but their images remain vivid in my memory. One had the habit of putting each of her hands in the opposite sleeve and peering over her glasses. With her white curls peeking out from under her habit, she would scan the room with a serious glance before spouting out some idiotic non-sequiter. “Girls, there are atheists among us,” she warned while she grew increasingly hysterical, “They will try to tempt you girls, but don’t let them. Don’t let them.” The same nun once gave us a long speech directed at preserving our virtue, “Girls are you like the beautiful shoe that one has to ask permission to try on or are you like the shoe on the bargain rack that anyone can come in and try on and does what he pleases with?” I think my fellow classmates and I spent the entire year alternating between stunned silence and suppressed hysteria.

Even the sensible nuns could not explain religion or morals. My senior religion class was taught by a nun that I adored. I had served on student government since my freshman year and she had been our faculty moderator. We had spent inordinate amounts of time together for the previous three years and the adoration was mutual. Senior religion class was a last ditch effort to get us on the Catholic bandwagon. Naturally, sex was a big topic. In one class, Sister Michael Ann led a discussion of why sex was a sin. I give her a lot a credit. Trapped in a room with 30 horny high school girls and faced with the charge of persuading us to reject our culture was no easy task. I, like most of my high school friends, was a “good girl.” I think maybe one guy had managed to touch my breasts at this point but sex was not even a remote possibility. Still, I just couldn’t follow Sister’s reasoning, “But Sister, if sin is a failure to love and you love someone and they love you AND you are willing to accept the consequences of you actions, why is sex a sin?” My friend Alycia told me years later that, with that question I had single-handedly convinced her that premarital sex was not a sin, condemning me to hell for all eternity no doubt for leading an innocent astray. Sister Michael Ann returned my gaze and conceded, “Because that is what the church teaches.” I wonder if she knew that we were all goners.

Despite all my religious indoctrination, I just couldn’t accept all the tenets of my religion. In my early twenties I decided to go church shopping. My first experience was at a non-denominational “Bible church.” At communion they passed around a tray of Kool-Aid in dixie cups. I couldn’t deal with the lack of ritual (or alcohol for that matter), so I moved on. I tried several other churches and none felt right. I have to admit that I loved the Unitarian service that I attended. The entire homily focused on the joy of mediocrity, which contrasted nicely with the last sermon I had heard at the Newman Center pushing us toward perfection. But try as I might to leave the Roman Catholic Church, my church shopping merely led my to the discovery that I was inescapably culturally Catholic. I attended an undergraduate where 45% of the student population was Jewish. Without even trying, most of my friends ended up being fellow Catholics. We never met at church, we all just seemed to have built in Catholic detectors. I should have realized then that I could no more stop being Catholic than I could stop being female.


A few months into my illness, my friend Theresa remarked, “You must be so angry.” I considered the comment briefly but found that anger was not among the many emotions that my illness evoked. “Who’s there to be angry at?” I replied, “It’s not like it’s anyone’s fault. I could be angry at God, but I don’t think he did this to me.” I honestly didn’t believe that God had sentenced me to my situation. Throughout my illness, my mom has insisted that God had chosen me for a reason. But I could never believe that. I just cannot imagine that God is somehow manipulating us like puppets on strings.

Somehow in my mind the corollary to “God didn’t do this to me” is that “God can not undo it.” It seemed somehow hypocritical to absolve him of responsibility but assume that he could intervene after the fact. I found that I simply couldn’t ask God to take it away. “Why should he relieve my suffering,” I thought, “There are so many people suffering far worse fates than I am.” I felt that I had no right to ask God to spare me. And so, I never did.

Then it occurred to me one day that even Jesus asked God to take away his fate, his cross. And surely, if Jesus could ask, so could I. That night I prayed to the God in whom I believe just a little but hopefully enough. I thanked him for the lessons of my illness. I acknowledged that others were suffering far worse than I and that I had no right to ask but I asked him anyway, “Please, make me well again.” In the following months, an elbow wound that I had endured for four years healed thanks to the concern and advice of two nurses. My pulmonary function also improved by 20% after I committed to an exercise routine.

But the question of whether God answers prayers is a quagmire. If God answers prayers, why does he answer some but not others. I was thinking of this one night while cooking dinner. I just couldn’t accept that God answered prayers because he clearly doesn’t answer all of them and it’s hard to have good feelings about a guy who only performs miracles selectively.
For whatever reason, I thought about a young girl who emailed me four years ago. She had seen my name listed as a contact person for a ministry for mothers at my church. In her message, she explained that she was 5 months pregnant and had moved to NC with a young man who was not the father of the baby. The young man had decided, after the move, that he did not want to continue his relationship with her. She was hundreds of miles from her family, jobless, and soon-to-be homeless. “Can you help me?” she asked.

I spent the next several days calling agencies trying to find her housing. I called the parish, which offered her some maternity clothes. This really pissed me off; what’s all this bullshit about being pro-life and you offer a homeless pregnant girl maternity clothes and nothing else? It didn’t take long to figure out that the only viable option in NC was a homeless shelter.
I spoke with my husband and suggested that she live with us. I conceded that we didn’t know her but that I just didn’t feel like I could send her to a homeless shelter. He agreed to meeting her and making a decision then. Upon meeting her I knew that we had to take her in and help her get on her feet. Yes, she had made a series of unfortunate choices, but she was young and good at heart. In her desperate eyes I saw the eyes of my own daughter. So we took her in. People told me I was crazy, but I kept thinking, “When I was homeless you opened your door.” I had to take her in.

Sandra had told me that she went to my parish that day for the first time to pray for help. She saw the ad and hoped it was her answer. Now years later I realize that I answered her prayer. And maybe that is the crux of it, God can only answer prayers through people.


By the time I had turned 27 I had experience three brushes with death. In the summer of 1993, my used car died while I was an intern at the National Center for Health Statistics in Maryland. After several trips to the Chrysler dealership, I decided to buy a Plymouth Sundance. It was the only car I could afford. Through some miscommunication, the salesperson thought I wanted a burgundy car, which wasn’t available. We had to drive to another dealership to pick up my new car. On the way back to Arlington to sign the paperwork, I commandeered the vehicle that was not yet mine. Somewhere along Highway 66 I missed the sign informing me that the far left lane in which I was driving was ending. I realized it too late and slammed on the brakes. The car spun 360 degrees and landed on the right shoulder. When it was over I looked up to see several cars stopped in stunned silence. Not a single accident had occurred. The salesman, who had watched the entire event through his rearview mirror, backed up his car and suggested,  “God must have big plans for you because it is clearly not your time to go.”

The second brush with death occurred in Uganda. I was walking to a casino from my hotel with a colleague when a man pointed an AK47 at us and demanded our money. I emptied my pockets rapidly while my companion sucked his teeth at our captor. “Are you crazy?” I asked. Our mugger then motioned toward my companion’s watch. “Take it off,” I demanded. Once the mugger had our money and timepieces he motioned for us to walk away. I walked away, sideways afraid to turn my back on the machine gun wielding man. But he let us go.

My last brush with death was a housefire that occurred one morning after I had already left for work. I lost everything that I owned but I learned that possessions don’t matter, especially when you have your health.

So when I developed scleroderma I had to wonder if God was trying to get my attention. I had this mental image of him hurling bricks at me saying, “Damn. This one is dense. What do I need to do to get her attention?


A few years ago, I sat in Mass on Palm Sunday. Having the children has predictably intensified my fears of dying. Leaving behind a smart, talented, loving spouse doesn’t frighten me. He will find someone to love and share the remainder of his life. But the thought of leaving my children fells me on an almost daily basis. More than anything else, I want to live to raise them to adulthood as I cannot imagine negotiating the teen years without a mother. Surround by the “Chreasters” -- people who attend Mass only for Christmas and Easter liturgies – I feel like I’m dreaming. The ritual, prayers, and song are all so familiar, but I feel so removed from it all. How do I celebrate a resurrection when I am dying? How do I celebrate the gift of everlasting life when I don’t want it. On this Palm Sunday, I find again no solace in this church and I leave feeling empty.

On my way home from church I realize why the idea of heaven offered me no solace. The idea that I could watch my children from heaven, from afar, left me feeling hollow. Tears rolled down my cheeks as I waited for a red light and I tried to imagine watching them without being able to hold them, touch them, or wipe away their tears. To me, the thought of being in heaven while I watched the lives of my children play out before me without any ability to intervene or support them was pure torture. I’ve always loved the idea of reincarnation and I tried to imagine how I could be reincarnated in such a way that I could still be a part of my children’s lives. Becoming a baby wouldn’t work because I couldn’t imagine how I could interject myself into their lives and how useful I could be. Then I thought about becoming a dog. It was perfect, Bill could go to the pound after I died and I could be there in my new, disease-free form. They could take me home and I would still be there. I could greet them every day when they came home from school and I could lick away their tears. I could still touch them and feel their hands against me. When they needed me I could insistently force my nose under their hands until they felt compelled to acknowledge my presence. I could protect their home and be their companion, their friend. I could listen to their troubles. I could be physically there for them until they left their childhood home. The idea of becoming a dog gave me the solace that heaven could not. I returned home shortly thereafter, “Bill, when I die, take the kids to the pound and buy the dog who pleads with you to take her home.” He looks at me with his eyebrows knitted together. “Ok,” he replies, knowing by now not to ask questions.

Today is Holy Thursday. After Christ shared the Passover meal with his disciples, he went to the Garden of Gethsemane to pray. There he asked his father to let “this cup pass from my lips.” I relate to Gethsemane so much now. I want so much to be relieved of my suffering. I want so much for God to take it away. And, for the first time, I understand the desire for heaven. Well, it’s not so much the desire for heaven as it is a willingness and, at times, a desire for an end to my suffering. It takes so much effort to do anything, even to make the kids’ lunches or drive them to their activities. I often cannot eat and my nights are restless. Breathing has become increasingly difficult and even walks on flat ground tax me. I am physically and emotionally overwhelmed. Tomorrow I will see my pulmonologist and ask for a referral for a wheelchair so that I no longer have to rely on my own ability to walk. It is the beginning of the surrender. And while I want so much to finally rest, I hate myself for raising the white flag. Where did my fighting spirit go? How can I give up when Amelia and Aidan are still so young? Maybe I am just a selfish person. Maybe I am weak. Or maybe I am practical: this is not a good life for any of us.

So, perhaps God finally got my attention, but I still do not know what he wants from me. My disease has brought my frail body and withered spirit to its knees. I am trying to accept each moment as it comes. I try each day to put one foot in front of the other. But I am so very tired now.

Friday, May 16, 2008

With Sniffles Predominating

My parents lived with us for two of the last three months. My mother cared for me, Bill, and the kids seamlessly. I marveled at her ability to run our household despite her 70 years and arthritic hands and knees. Even at my best, I never kept the household so organized. She dressed my wounds and wiped my tears; she helped me shower and dress. Once again I was her helpless child, and she bore the burden without complaint or tears. Only once did I hear her sobbing behind the closed door of our guest room.

My mother craves an explanation for all this and, in her devoutly religious mind, God is the only explanation. There must be a reason and, conversely, there must be a way out. “You just haven’t surrendered completely to him,” she said to me one morning shortly before they left. If I surrendered any more I might as well lie down in the middle of a busy highway. “This isn’t my failure, Mom,” I answer, trying so hard not to offend her. I know she needs to believe that God is going to take this all away. Without that belief, her tears would start and never cease. She cannot bear the idea that she might bury her child. So rather than grow angry with her I try to find sympathy for this poor, desperate woman. And I let her believe what she needs to believe.

Through most of their stay my father busied himself with the dogs, the yard, or my book collection. I was struck repeatedly by his lack of instinct. I would launch into a coughing fit and he would sit there paralyzed while my mother met my needs. In some ways he was as helpless as she was helpful. I would observe all this and think, “That Y chromosome is missing some really valuable information.”

It wouldn’t be exactly correct to say that my father is a man of few words. When he is in a talking mood, it is difficult to shut him up. But, more often than not, he prefers to sit in silence pouring over the pages of a book. He is a voracious reader, and my most enduring image of him is seated on my parents’ living room sofa in the dim light of an incredibly odd lamp whose base looks like a handsome Don Quixote. My dad reads everything: books, magazines, newspapers, cereal boxes, instruction manuals. He even reads cookbooks, and he can barely boil water. Despite his devotion to the printed word, he seems to lack any faculty for languages, including English. He fumbles and trips over words that seem to lack any fluidity.

One of my dad’s assigned tasks was to accompany me to the kids’ activities. One night, less than a week after my first tube was placed, I insisted on taking Aidan to gymnastics. My dad and I sat and watched while I coughed almost continuously for an hour. At one point I placed my hand over his and he cupped it gently. We sat together without saying a word. My hand felt warm and cherished against the rough skin of his palms. I didn’t need his words to feel his comfort and support; I just needed his presence.

The week before him and my mother left, he came and sat on my bed. I was feeling low. I had little appetite and the tube was making my nights fitful. And this man of few words sat with me, “No one can tell you they know how you feel because they don’t. I know you’re frustrated and sad. I can understand that, but you have to keep going. It’s like you said ‘It’s a marathon not a sprint.’” “Besides,” he continued, “You’re a tough cookie.”

A smile eased across my face. When I was a toddler just learning to talk, my parents would ask me, “Michelle, what do you want to be when you grow up?” And I would answer, “A cookie!” When I approached my adult years and began to suffer life’s trials – the end of my first real relationship, my house fire, my diagnosis with scleroderma – I would always assuage my father’s worries with a well-timed, “Don’t worry, Dad. I’m a tough cookie.” And I am, or at least, I was, but I now fear that I am beginning to crumble.

We sat together on my bed that morning and I enjoyed his easy company. He didn’t tell me what to do or feel. He didn’t give me a long-winded pep talk. He listened and echoed my feelings and fears. He was present with me and let me be where I was: sad, discouraged, and bordering on hopeless. And in some strange way, his accepting presence made it easier to chip away at all the negative emotions and find some small ray of happiness and enough momentum to keep going.

When I was a child my father would always paraphrase O’Henry, “Life is made up of laughter, tears, and sniffles, with sniffles predominating.” This always seemed to pessimistic but in keeping with my father’s curmudgeonly streak. These days I find wisdom in O’Henry’s observation. My emotions lurk just below the surface and it takes very little to cause my eyes to well. Last week I was driving Amelia to violin and the Kinks’ “Come Dancing” came on the radio. I always loved that song because the younger brother’s narration reminded me of my own childhood watching my older brothers head out to high school dances while I was just a grade-schooler. They seemed so grown-up and I relished the idea that one day I, too, would go to high school dances. As I listened to the song I thought back to all the happy moments I have spent dancing. I never had to be coerced to dance; I was usually the first and last on the dance floor. (Although I do NOT like the electric slide or the Macarena, I still do them.) When my brother got married in January, I still danced but only with great effort. It was hard to breathe and I had to be very careful not to overdue it. It’s the first time that my lungs kept me from dancing with reckless abandon. As I listened to the Kinks sing about whether the grown up sister would still come dancing I started to cry. What if soon I cannot dance at all?

Of course, I am probably the only person on earth to have cried to “Come Dancing.” If I cry the next time I hear “Lola,” I am going to really start to worry.

I wonder now if the “sniffles predominating” becomes true as one ages. When you turn over an hourglass, the initial grains move slowly, but as the volume at the top decreases they flow faster and faster into the bottom chamber. That’s how my losses feel now. I can no longer sing and often cannot speak. I spend hours of everyday in complete silence. I can no longer hike or ride my bike and even walking the dogs has become a challenge. The losses keep coming and I cannot seem to stop them. I keep trying to hold onto things but they keep slipping through my hands. I feel like I am aging in fast forward, living my life on the living room sofa watching movies and reading books. I feel a sense of accomplishment if I manage to run an errand or meet a friend for lunch. I’m starting to feel like Peggy Lee, “Is that all there is?”

And then I pick up the New York Times and I see the picture of a Burmese women amid the wreckage of her home and community. She has no food, no shelter, no clean water, and little to offer her hope. “Shut up, Michelle,” I want to say to myself, “Yes, you are suffering but you have everything you need to endure it.” I realize there is not much point in self-flagellation but I don’t want to lose sight of everything I have to be grateful for. And, yet, this is still not the life that I want. I takes a lot of effort to focus on the simple joyful moments that still happen every day. I try to be satisfied with my blessings: Aidan’s wet kiss as he parts for the bus, Amelia’s private notes tucked under my pillow, Bill’s utter and endless devotion. At times these things seem like enough to keep me going. But, honestly, there are times when they are not. There are times when I just want to lie down and die. I am so tired.

In any given day this war between these two alternatives, fighting for my life and accepting death, occurs almost hourly. The former is the victor to date. Last night Amelia asked me to talk to her about her changing body. We had a great conversation about what will happen to her in the coming years, how to prepare, and how to deal with all the peer issues that surround puberty. During that conversation I was so glad that I keep choosing to fight because I was there to mother her when she needed me. I guess that has to be enough for now. But I want more than this, and I feel horribly guilty that being the mother of my children often does not feel like enough to continue suffering and fighting. Isn’t a mother supposed to be willing to do anything for her kids? If that is true, what kind of mother does that make me?

The reality is that every mother is, first and foremost, a human being. That’s all I am and all I can expect myself to be. I just hope it is enough. So I sniffle my way though my days and try to relish every moment of joy that presents itself in hopes that I can continue to be part of my children’s life for at least a while longer. Maybe when tears predominate I will know that it is time to accept death and trust that Bill and the kids will have gotten what they need from me. Maybe then I can go with a clear conscience, knowing that I did everything that I could do.

Tuesday, May 13, 2008

In Sickness and In Health

When Bill and I stood before family and friends on October 11, 1997, we pledged to love each other in good times and in bad, in sickness and in health. For us the pledge was already relevant, Bill placed a wedding band on my cold, swollen, ring finger that day. Sickness was already a part of our reality and would become a constant companion in our marriage. My symptoms started around the time we got engaged; a few months after our wedding doctors diagnosed me with scleroderma and told me that I would soon grow very ill.

At a time when most newlyweds are planning their life together, Bill and I were gripping the idea that “Til death do us part” might be much sooner than we expected. During the first year of our marriage, Bill held onto hope for me until I was willing and able to hold onto it myself. When I tried to succumb to my depression in those early months, Bill prodded me, “You can’t just give up like this.” And he nudged and nudged like a loving but annoying puppy until I finally, literally, got off the sofa and started living again.

When I first expressed a desire to have a child, a family member advised, “You shouldn’t have children if you aren’t going to be alive to raise them.” Pursuing parenthood was the most hopeful thing that Bill and I could do in the face of my worsening illness, but it was also an act of defiance. Scleroderma was not going to rule our lives. And so, Amelia and Aidan, entered the world via my less than perfect but apparently adequate body. Soon after our third anniversary, we were a family of four.

Somehow, Bill and I managed the façade of a normal life despite my chemotherapy appointments and hand surgeries. Scleroderma had not ruined our life or our love, but it had colored it so deeply that it was a permanent part of the fabric of our union. Bill’s optimism allowed him to cope easily with the implications of my illness. Under the surface, my illness created an undercurrent of worry in me that sometimes made me feel like I was drowning. At those times I reached for Bill who always managed, somehow, to keep me from going under. The years passed by and, before long, we marked 10 years of truly living with scleroderma.

Then, with the speed of an impending front, my health declined. I found it increasingly difficult to meet the demands of a relatively sedentary job or to negotiate the stairs in our home. Bill and I attributed the shortness of breath to the winter blahs, we tinkered with my meds, we tried to carry on as usual. Despite our efforts, I soon stopped being able to run after our young children. Sores covered my hands, elbows and ears, lasting months. I coughed relentlessly every day until I was left breathless and perspiring with my head against the “Porcelain God.” By summer it was clear that scleroderma had finally decided to demand its due.

“Why are you doing the dishes?” he yells at me exasperatedly one night. I feel so angry with him. I watch him, when he thinks that I am not looking. I see the worry on his face and the weight of all his many responsibilities. Every night he leaves a demanding academic job at a relentlessly competitive medical school and he works second shift at home. He cleans the kitchen, does the wash, and readies the children for bed. After they are off, he works more on his papers and grants thus ensuring his presence every night for dinner. And he tries to manage my medical care, using his connections to access anyone who might relive some of my suffering. “Because I feel so sorry for you!” I yell back unable to see clearly past the tears welling in my eyes. “I wash the dishes because I can do that,” I stammer, “Because I love you and I feel so badly for you.”

Ours is not a marriage of romance and passion. Our lovemaking has more to do with folded clothes and unloaded dishwashers. I feel his love in the way he lays out my meds and holds my hair as I puke, yet again, into the toilet. It isn’t pretty and it is not for the faint of heart. I have had to learn to be intensely vulnerable and trust him completely. And he has respected my vulnerability with compassion. The infatuated sexual encounters of our courtship having nothing on the intimacy we share by accepting and enduring as a united front everything my illness has wrought. I realize now why old couples still hold hands, they have only just begun to discover the depths of their love. Bill and I are merely four decades ahead of schedule.

One day I unexpectedly stumbled across a file that contained every card and letter that I had given Bill during our courtship and marriage. I sat on the floor of our office and revisited dusty memories. I ran my fingers across the front of one card, me eyes welling with tears, “Someday, when we have been together for a very long time, we’ll turn out the lights and slow dance on the porch in our bathrobes … And each night, we’ll roll to the middle of our old bed into one another’s arms. Where we’ll kiss, and touch, and dream the secret dreams that only old lovers know.” Apparently, I purchased it after being short with him for being inept in the kitchen. Inside the card I apologized for being inpatient and reassured him that I picture us old together, chubbier from a lifetime of pasta dinners. I bought the card before I knew I was sick, back when I thought we would grow old together. And I sat in the middle of the floor and cried, because it will never be and because I have never mourned losing Bill and me.

Someday he will grow gray with the love that replaces me. Surprisingly, this reality makes my fate tolerable. I find comfort in the idea of him finding love again and healing in someone’s loving embrace. I hope that in watching their father move on, the children will also learn to love the mother who takes my place. But I wish that Bill and I could be a little old couple walking along hand in hand, a testament that love endures time, illness, and nitpicking. I wish that “’Til death do us part” was still off in the distant future.

One night I tell him the truth. “I think that at some point the cost of me being here is going to higher than the cost of me staying, “ I reason ever the economist. “I want the kids to have a mother who can do things with them, who can take them hiking and skiing. And I want you to have a better life than this with someone who can do more.” “But I want you,” he responds without even the slightest pause. Everything about this scenario is improbable – developing a rare life threatening disease so young, successfully having a family and a career despite the illness, and succumbing to the illness at a point when I should have been in the free and clear. But, to me, nothing is more improbable than Bill’s continued desire to remain by my side through it all.

Sometimes I realize that, unlike me, Bill chose this life. He knew that I was sick before we married, but loved me enough to stay. One night in the emergency room I asked him, “Why did you stay?” He cracked a joke in response. The next day while I lay on my bed he knelt by my side. “I honestly never considered leaving. I love you” And he says it with all the right emphasis on the word “love” that tells me how much he means it. He makes it sound like loving me is like breathing, an involuntary and necessary part of his existence. In this moment I realize how much he loves me and how very lucky I am that on a beautiful October day at the end of a church aisle he uttered those seemingly trite vows and meant every word.