Wednesday, July 30, 2008

Let It Out

The other night I put the kids to bed and then cleaned up my room. I opened the door to the hallway to find Amelia standing there. She looked like a ghost with her pale blue pajamas almost glowing in the dark. "Mommy, I am really afraid about you and I need to let it out." I have told her before, "Your feelings are there and they need to come out. They will come out one way or another and if you don't let them out in a controlled fashion, as sorrow and tears, they will come out as anger and other emotions."

I walked with her to her room and sat beside her bed.

"What are you afraid of?"

"I'm afraid you are dying."

"What scares you most about my dying?"

"It will be so different."

I acknowledged that it would, indeed, be very different. But I also assured her that her father loved her and he was going to be able to handle life without me. I reminded her how he got everything ready for the beach when I used to do all that. I told her how important it was for her to help her dad both now and when I am gone. I noted how much she had helped prepare for the vacation and outings to the beach.

"I do think the TPN is working honey and I think it is going to give us a little more time. Who knows maybe we'll get another year, 2 years, 5 years, it's impossible to say." Maybe it is unfair to be this frank with her, but I really do not know how else to be. "And I think that, when I die, if I ask God to let my spirit stay with you, he will grant me that," I reassured her. And I thought about a friend who told me that a mother she knew said she looked forward to dying because that way she could meddle more effectively. What an appealing thought.

"Amelia, I know this for certain: even if I die, you will have a wonderful life. You will travel with your father and brother. You will continue to enjoy school, you will still find happiness. You don't need me here for that."

"Will you lie with me?"

I crawled in under the covers and we shared a box of tissues. She didn't say anything else and I thought she had fallen off to sleep. I crept out of the room and she called out to me, "I love you Mommy ... so much."

I used to think I had made a mistake by having them, that I had been terribly unfair in sentencing them to this heartache. But I finally realized that came from a pretty egotistical view of motherhood: that life is only worth living if your mom is there to raise you. Amelia and Aidan do not belong to me; they belong to the world. I was merely a vessel for them. And I will nurture them for as long as I can, and then trust that the world will take over from there.

Tuesday, July 29, 2008


Yesterday I woke up feeling blue. I was't blue about anything in particular just feeling generally yucky. I dressed and decided that I just need to get out of the house. Given that Amelia was out of Nancy Drew books, the library seemed like a good place to go. I gathered the library books from about the house and placed them in one of the 300 or so plastic shopping bags in our pantry. Of the "reduce, reuse, recycle" mantra we are failing miserably at the first one and barely passing at the latter two. More on my carbon footprint in a future post ...

I placed the books in my car and headed to the library. I love my car these days; it one of the few things that affords me freedom. My handicapped placard makes my life easier, especially in the colder months. I'm still waiting for someone to make a crack about me having one because I am not obviously ill, just emaciated. If some smartass ever does say something I have a comeback ready, "I'll make you a deal. You can have my placard but you have to take the disease as well." I don't think I'll get any takers.

I arrived at the library at the same time as an elderly couple sporting their own handicapped placard. The wife and I stepped out of our respective vehicles simultaneously. Afraid she's look at me with judgment, I averted my eyes. She did not say anything to me. I suppose I should give people more credit; perhaps most people realize that an illness is not always obvious.

After dropping the books in the bin, I grabbed a maroon shopping basket and headed for the Nancy Drew books. Amelia has read 37 of the original 64 books so it is getting tricky to pick one that she has not already read. I perused the titles and chose the few whose titles I did not recognize. Then I headed off to find the Henry and Mudge books for Aidan. Aidan reads well, but he much prefers activities that involve building, destroying, or maiming. He likes the Henry and Mudge books and, given that they are very easy for him, I thought he might be willing to read them during his downtimes. As soon as he has one of those; we are still waiting for that to occur.

When I reached the back of the library I was out of breath and had to crouch down. I seem to remember learning in nursing school that kids with some cardiac defect do that as well. I wonder if it makes it easier to oxygenate somehow. Luckily I chose to crouch right in front of the Henry and Mudge books so I placed them into the basket and continued to rest.

"Michelle!" someone called to my right. I looked up and there were my neighbors, Sally and Reeve. They have a son Amelia's age and it was Sally, in fact, who introduced me to the Henry and Mudge series. We started chit-chatting but I quickly realize that I did not have enough breath to speak. "I'm sorry. I am really out of breath." Sally graciously offered to carry the basket to the check out, waited for me to check out, and carried the pile of books to the car. I thanked her and we parted ways.

I am always struck by the fact that I always have the help I need when I need it. I was just trying to figure out how I was going to carry the books when Sally and Reeve appeared. In those moments the mustard seed of faith thinks about growing a little. Of course, I'd really like a big miracle, but I am grateful for all the little ones along the way.

On the drive home I felt frustrated. All I wanted to do was get some books for my kids. It's such a small thing: walk into the library, pick out the books, and bring them home. And I could not do it without help. All I wanted was to be a mom in this small way so they know how much they mean to me, so Amelia could have her Nancy Drew books, and so Aidan could read to me in his sweet little voice.

So I woke up today feeling even more blue. I had a morning coffee date with my friend Kim and she graciously agreed to come here rather than meet at the coffee shop as we had originally planned. As always, she listened to my woes and made me feel a lot better. I guess I just needed to let it all out.

So I tried again today. I got in the car and went to Blockbuster. After returning our prior rentals, I perused the shelves and picked out two movies (Sicko & the new Harold and Kumar). While I was looking for the movies and employee came up to me with the videos I had just returned, "Great, the DVDs are probably in the player." She informed me that they were not from her Blockbuster; they were from the one in Chapel Hill. I'm not sure why Bill drives to Chapel HIll to rent videos but that's his business. So I drove to Chapel Hill. Along the way, my car informed me it was low on gas with it's annoying but useful bell. So I filled the car up with gas and dropped off the videos.

The Chapel HIll Blockbuster happens to be right next to Whole Foods and I really needed to get a few items there. Bill hates Whole Foods in a way that borders on being pathologic. He doesn't even like me to say the name of the establishment. I will grant him that the prices are a bit crazy but, when living a dairy-free life, Whole Foods is a godsend. So I stood there pumping gas and wondering, "Do I brave it? Am I up to a grocery market run?" Then I thought about the kids and what little energy I had. If I went to the supermarket, I would not have energy for them tonight. So I got in the car and went home, accepting my limitations.

Monday, July 28, 2008

Earth Angel

She talks endlessly in the dim auditorium as we wait for the performance to start. I look into her big blue eyes. Her enormous pupils seem determined to absorb every point of light in the room. She always drinks in everything. She's such a joyful human being, so effusive, and as I look into those eyes I wonder how she will manage to stay that way.

Depending on whom you ask, Amelia’s existence is the consequence of a poorly drawn but well-played hand, a miracle, or dumb luck. After being diagnosed with scleroderma in my late 20s, three “experts” warned my husband and me not to attempt a pregnancy. We politely thanked each of them for their advice but ultimately decided that we could not allow scleroderma to ruin our hopes of someday creating a family. Much to the nay-sayers’ surprise and our delight, our daughter was born healthy and strong on a hot June evening. I was too exhausted to feel joy at the moment of her birth, but her daddy happily paraded her through the halls to her waiting grandparents and, in their presence, she opened her eyes for the first time and they received her into their hearts. My love for her bloomed weeks later during an otherwise ordinary afternoon while she sucked on my right index finger. Something about her skinny legs sticking out of her red and white checked onesie finally melted my beleaguered postpartum heart. Since that day my love for this child has never faltered.

From that day on it was easy to love Amelia. She was a happy baby who drifted off to sleep easily though never slept for very long. Our happy infant grew into a happy toddler who lay in bed practicing new words for an hour before she called for anyone to get her. Amelia seemed to have put herself on some sort of word-of-the-day program. One morning I heard her saying “Overalls, Overalls” repeatedly as if she was determine to master the word on that particular morning. When most of her playgroup friends were putting their parents through the “No” phase, Amelia said “Yeah” to everything: every food, every activity, every command. When her little brother, Aidan, came along, she literally welcomed him with open arms after carefully preparing a blanket for him. The years rolled by and Amelia grew from a happy baby to a carefree child; at every phase she was simply a joy.

While my illness was always part of our lives, limiting some of our family activities, it was largely background noise. I endured one six-month round of chemotherapy and 4 hand surgeries when the kids were too young to notice. I learned to deal with the pain, and we muddled along like any other busy modern day family of four. Then suddenly, when Amelia was halfway between seven and eight, I noticed I was out of breath walking from my car to my office. Within a few weeks I found myself breathing harder after climbing the stairs to the second floor of our home. One night I stood naked in front of the mirror and saw the muscles between my ribs and under my collar bones contract with every breath. I avoided the two-flight jaunt to our playroom by purchasing phones with intercoms. I lost 10 of my whopping 95 pounds. My illness went from the background to center stage and quickly began to consume our lives.

As my illness worsened, my husband and I tried desperately to maintain as much normalcy as possible. But the severity of my symptoms infiltrated every aspect of my life. My most debilitating symptom is a relentless cough. I have had a cough for over 7 years. In the last 12 months, however, the cough has made the simplest of tasks difficult. I actually cough to the point of vomiting sometimes as many as 3-4 times a day. Talking worsens the cough and often I cannot read to the children, sing their lullabies, or even communicate with them. We have a family sign, a circle drawn in front of my mouth, so that I can tell everyone that I am unable to communicate. We cope. My days of dramatically reading their nighttime stories are nothing but a memory; now they read out loud to me. The kids often sing their lullabies to themselves while I rub their backs. There are upsides, the household is a lot quieter now that I can no longer yell. But my frequent inability to communicate has been very hard for me. After all, I was voted “Most Talkative” in high school. I joke that perhaps after a lifetime of talking it is finally time for me to learn how to listen. When Amelia and I walk the dogs she carries 90% of the conversation. One night she looked up at me, “I am talking too much, aren’t I?” “No,” I replied, “I cannot talk anyway and you are good company.”

The coughing episodes are remarkable in their intensity and frequency. The kids have witnessed them daily for over a year and know how to help when they occur. One night Bill was at soccer practice with Aidan and I started coughing uncontrollably. Within seconds Amelia brought me cold water, a towel, tissues, and a wet cloth that she dabbed on my forehead and neck while I worshipped the porcelain god. She cared for me with compassion and not the slightest sign of fear or self-pity. My heart broke for this poor child. While Amelia and I have occasionally discussed my illness in general terms, she has said little over the last few months. As the episode drew to a close I looked up at her, “I am so sorry that you have to watch this, Amelia.” “It’s ok, Mommy,” she said with a brave face, but the slight quiver of her lip gave her away. “You don’t have to be brave. It’s ok to be scared,” I replied. I knew she needed permission and a push to unleash her feelings. She diverted her gaze to a spot on the ceiling as the tears began to well. Then the tears fell fast and furious while her little face twisted into a grimace. She curled into a ball on the floor and rested her head on my lap.

“I don’t want you to die, Mommy.”

“I know, I know, honey. I don’t want to die either and I am doing everything I can to live. I know you’re scared and that’s ok.”

What am I supposed to say to her? I cannot tell her that I am not going to die because, quite frankly, I cannot say that with any certainty. And I don’t think lying to her serves any purpose. I continued to hold her and stroke her long blond hair. We used to fight over her refusal to cut it to a shorter style, but as I raked my hands through the strands of gold I understood her profound attachment to her lovely mane. There we remained in the bathroom, my exhausted body cradling this child who has physically outgrown my lap but emotionally needs me more than ever.

Every Disney princess, it seems, is missing one or both parents. I’m sure this satisfies some deeply rooted childhood fantasy to be free of parental control and authority. Freedom from authority appeals to the Peter Pan in all of us. Who among us doesn’t want to be free to indulge their primal desires? And the image of a helpless Snow White or Cinderella indulges our predilection for drama. But the absence of one’s mother only works as an occasionally indulged fantasy. For my daughter, the idea of life without her mother is far too real a proposition, a notion she has to push from her consciousness far too often just so she can live a normal life.

I am dying. I hope it is not a matter of how many months but how many years. When Amelia lost her two front teeth I placed a tick mark against “lost baby teeth” in my mental list of milestones that I have lived to see. But when I mentally scroll down the long list I wonder how many I will be here to witness. I took her shopping one weekend for a dress for my brother’s wedding. She was so excited to go into dressing rooms with me, zipping zippers and tying bows. She happily weighed in on each dress, the color, the cut. We had dinner together surrounded by all our bags. She grinned and gabbed up a storm over her pizza. I watched my grown up girl and savored the moment, but inside a nagging voice asked, “Who will she do this with when you're gone?” Who will zip up the prom dresses and wedding gown? How can you ever leave her?

I this race against time I have so many things left to do. I opened a savings account for her. When I took Amelia to make her first deposit, I coached her through the transaction in a stage whisper. “You did a good job,” I told her as we left the building. She took her lollipop from her mouth, “No I didn’t. You had to tell me what to say.” “How do you think I learned,” I responded, ”No one is born knowing how to deposit a check.”

The other night she and I were dancing in my cavernous bedroom. When we bought the house I joked that it would be perfect for ballroom dancing and so it is. I taught her how to rumba and tango. I played the man and taught her to follow my lead. “A dance floor is the only place you let a man have complete control, “ I half-joked, “And, even then, only if he is a very good dancer.” She clumsily tried to follow the steps. I whirled her in my arms while her long blond hair drifted through the air. My lungs cooperated so that I could breathe every perfect moment of the scene. We smiled and laughed together.

“I could leave now,” I tell my husband, “I have had a good life.” And he would let me make that choice even though it means making his life harder. He loves me that much. “You’ll be fine. You’ll find someone to love and you life will be so much easier then – with a healthy wife,” I honestly believe this to be true. “But I cannot leave them, not yet,” I say wondering if I could ever possibly be ready to leave. And I wonder at what point the thought of them witnessing my struggle to live will seem worse than their having to adjust to life without me. I am the only person who really knows them. Who else knows that my daughter prefers her oranges cold, Bonne Maman strawberry preserves, and a good foot massage? No one else has memorized her hairline or the placement of every freckle or the way the nail doesn’t quite manage to cover her big toe in the usual way. Someday I won’t have the monopoly on knowing my daughter. Perhaps then I can leave.

There are so many things that I want to teach her. So many things left to do before she’s ready for me to go, before I am ready for me to go.

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

When she was a baby, my husband used to fly Amelia around the room. “Look what I found,” he would exclaim, “I found an angel.” It sounded like hyperbole but it wasn’t, at least not to my ears. It was the truest statement I had ever heard. In my darker moments I contemplate the many ideas about what lies beyond this life. When I first became ill, I dissolved into a fit of tears whenever I entered a religious sanctuary of any kind. On a hot summer’s day I stood in the barren mission in Sonoma, a deluge of tears rolling from my cheeks onto my increasingly damp t-shirt. At the time I was feeling abandoned by the God that I had been taught to trust by my mother and the nuns that figured so prominently in my childhood. But now I cry in church because my time on earth is drawing to a close and I cannot bear the idea of heaven with God and the seraphim and cherubim. I don’t want that heaven. All I want is the heaven I already inhabit here with the angel I already have.

Saturday, July 26, 2008

How to Roast a Chicken

One of my favorite main courses is roast chicken. It's not so much that I love to eat roast chicken -- I like it perfectly well but it's not in my top 5 meals -- I like to make it. It is simple, versatile, often yields left overs, and, most importantly, the carcass provides the foundation for wonderful soup stock. I estimate that one chicken gives us between 4 and 5 meals.

While we were in Italy last summer (Incidentally, I have hilarious travelogues of our Italian adventures. If you would like to read them, feel free to email me and I will send them to you), it became clear that my lung disease had worsened substantially. Bill and I had been in Greece and Turkey the prior year and I had no difficulties; in Italy every day was a struggle. Yet, we managed to last 7 weeks and visited 15 different cities. I am either incredibly stupid or incredibly stubborn or both.

When we arrived back in the States I had a series of medical tests. We ruled out pulmonary hypertension and found little radiographic evidence of worsening fibrosis, but my pulmonary function -- specifically the amount of air I could force out of my lungs (it's called forced vital capacity) -- had fallen to 44% of the predicted amount for someone my age, size and gender. Our lungs are uniquely designed to have "excess capacity." In other words, our lungs are bigger than they need to be. It's a handy feature in such an important organ and, for me, it was the reason that I had no shortness of breath for the first 9 years that I had pulmonary fibrosis. I had enough lung function to live a relatively normal life. But once I fell below the 50% threshold on my forced vital capacity, shortness of breath became a lifelong companion.

We (Bill, my docs, and I) decided to try cytoxan, a chemotherapeutic agent. The evidence was that it had only a modest benefit and that once the drug was discontinued the benefits dissipated. Given the multitude of side effects of cytoxan, I had very mixed feeling about trying it but felt like I should at least give it a shot.

That's when my love affair with chickens really took flight (ok, that was a bad pun). For very little work I could get a lot of meals out of one bird.

Approximately every week I would buy and roast a chicken. We would have it for dinner that evening. Bill and I only eat the white meat. Amelia happily devours one leg and thigh and saves the other one for the next day's lunch. If I am lucky, Aidan will put one bite of the chicken into his mouth and swallow it. 'You know," I usually explain in a rather frustrated tone, "it's [theoretically] the same thing in chicken nuggets." "No it isn't," he counters, "It's not breaded."

Commercially produced chicken nuggets are the bane of my existence. For years I banned them from the household. I cut chicken breasts into small pieces, breaded then, and then baked or fried them. Aidan was fine with this until he had a real chicken nugget. Subsequently he dubbed my homemade version unacceptable and refused to eat them. What do they put in those things? I swear there's crack in the breading that makes kids addicted to them. I tried to hold my ground, but Aidan can outlast anyone in a head-to-head battle of wills. I decided it wasn't a battle worth fighting and I now buy the extra large bag of chicken nuggets every week and he makes them for himself when he finds dinner revolting. (He has to try everything, which means he puts a microscopic piece of food in his mouth and declares that it is "gross." I'm just too tired to argue at this point.)

We'll usually get one more dinner out of the leftover meat, putting it into quesadillas or chicken salad. When the bird is picked clean I throw the carcass into the pot with celery, carrots, onions, garlic, salt, pepper, and whatever spices strike my fancy. I cover the contents with water, bring it to a boil, and then set it to a slight simmer for most of the day. When the broth is finished I strain it because my family hates to see vegetables floating in their soup and I indulge this idiosyncrasy. I reserve some stock to use for a carrot or other pureed vegetable soup for another night's dinner (you should hear the groans of discontent on pureed vegetable soup night!) . Then, in a two quart saucepan I add either stewed tomatoes or tomato paste to the broth and bring them together to a gentle simmer while I make some orzo or egg noodles to add to the broth.

When we sit down at the table with our steaming bowls, Aidan is the most delighted member of the family. For he loves soup almost as much as chicken nuggets. Over the past several days the humble bird not only has satiated us physically numerous times but also has nurtured our spirits. Amelia practically dances with joy at the bird's "debut meal" she loves chicken legs so. And Aidan looks forward to the soup as one of the few meals that he truly enjoys along with everyone else. I take great pleasure in serving my family nourishing food without exhausting myself in the process. And, Bill? Well, he's a simple man: sometimes a chicken is just a chicken.

A couple weeks ago the kids were with my in the kitchen when I began roasting the bird. "How do you roast a chicken?" Amelia asked. "Why don't you stay and I'll teach you." Amelia stood by my side being tall enough to see over the counter. Aidan climbed atop the counter and sat down.

I don't know where I learned to roast a chicken. I suppose I read a recipe at some point but I seem to have developed my own way of doing it that works reasonably well. I proceeded through the steps, explaining what I was doing. I cut a lemon in half and squeezed the juices over the chicken. Then I tucked the halves into the cavity of the bird. "Why are you sticking the lemons in the bird's butt?" Aidan asked, giggling hysterically.

"Oh, you think that's funny, huh? I guess that is kinda funny. It keeps it moist as it's cooking."

Then, I did the same with some smashed gloves of garlic. I prepared a mixture of olive oil, salt, and spices, "You can use whatever spices you like; it doesn't really matter much." "Can I rub it on the chicken?" Amelia begged. Man, you could not have paid me to touch a raw chicken at her age. "Sure," I responded. She took the bowl and rubbed the contents all over the chicken. We covered the chicken with foil and placed it in a 325 oven. "It's best to cook it low and slow so it stays tender." We cleaned up and I told them about basting the chicken with a liquid -- wine, broth, water -- once in a while. And then removing the foil when there was about a half hour left until the bird was finished. "How do you know when there's a half hour left?" Amelia asked. I didn't really have an answer for that; I just sort of know. I assume she'll figure that out herself at some point.

It was such a special moment for the three of us. One of those quotidian moments that blooms out of nowhere and astonishes me with its perfection: simple and light yet somehow deeply profound. It is these moments of motherhood, still available to me, that keep me going. They make the suffering bearable because I was there to teach them how to roast a chicken and, when they grow up, I will be with them every time they take that humble bird and prepare it lovingly for their families just as I do now for them.

Thursday, July 24, 2008

Sorry Seems to Be the Hardest Word

In the days immediately following the embolism, Bill seemed so much calmer than I did. I asked him how he recovered so quickly. "I've been in similar situations so many times before ..." he replied. "But not with your wife," I interrupted. "No, but I know from experience that the memory of the event fades in intensity and frequency over time. All of a sudden you realize 5 minutes went by and you hadn't thought of it, then it becomes 10 minutes, then an hour, and soon it's no longer a part of your daily thoughts."

I decided to trust him on this and assume that the same would happen to me. Much to my surprise I started feeling better Tuesday. My appetite started to return and I was able to eat my usual small meals. Yesterday I went the whole day without Xanax. I felt happy again.

Then the doorbell rang. When I opened the door, the postman handed me the day's mail, including a certified letter from the home nursing agency with whom the infusion company had contracted to provide my care initially (We now have one of the infusion company's nurses instead). I knew Bill had spoken with the owner of the company and, to my knowledge, they had agreed that the company would assume financial responsibility for the ER visit and the related mental health visits. So, I assumed the letter was merely a formalization of that agreement.

When I opened the letter I found the following words scrawled on the letterhead: "Dear Dr. Steinbach, Who told you to change the cap?" It was signed by a nurse. I was confused and disquieted by the letter. I called the agency and asked to speak with the letter's author. I tried to be as diplomatic as humanly possible. "I received your letter and I am a little confused by it. Could you explain to me the purpose of the letter?" She proceeded to explain that it was just a question. I explained that the infusion company had told us they needed to be changed weekly but that her nurse had neither changed them nor taught us how to change them. Apparently there is a difference in policies between the infusion company and the contracting home care agency. I could have understood the mix-up had this woman spoken to me with even a modicum of respect and sympathy. Instead, she spent the entire call berating me. When I explained my concerns about her employee's nursing skills, she gave no explanation or offer to look into the situation. All I got was a steely silence.

At one point I gently expressed to her my feeling that the letter was unprofessional, inappropriate, and unsympathetic. "At a minimum it should have been typed," I explained, "and it should have begun with 'I am sorry for what you experienced last week.'"

"You cannot tell me what my letters should say."

I was stunned. "I'm sorry, can you tell me what your position is in this organization?" I asked.

"I'm the owner."

"Oh my. You have interesting ideas about how to run a business. Look, I know you are concerned about litigation," I began, intending to reassure her that we did not plan to pursue legal action. "No, I am not. We did nothing wrong. What went wrong is that either you or your husband decided to change that cap."

I felt like I had offered her an olive branch and she whacked me with it. I was incredibly startled by her words and tone and I immediately thought of Eleanor Roosevelt's famous quote, "No one can make you feel inferior without your consent." Buoyed by Ms. Roosevelt's wisdom I replied, "I'm sorry. You are not a very nice human being. I don't wish to speak with you anymore."

I hung up the phone, shaking. I felt like a rape victim who just got told it was her fault for wearing suggestive clothing. I called the infusion company to report the incident. Thankfully they were apologetic and promised to look into the matter further. After I hung up with them, I didn't know what to do.

So, naturally, I called my mother.

She calmed me down and called the mean old lady a bitch. And she made me feel much better. Moms make even grown-up psychological boo-boos better.

I made dinner, took a Xanax, and watched movies with the kids while knitting. By bed time I was feeling much better. I was able to look back on the call and actually feel sorry for the woman on the other line. How horrible it must be to live life that way, incapable of sympathy and compassion. Perhaps she has the mistaken notion that an apology increases the risk of litigation when, in fact, research shows it reduces the risk of litigation. What patients want is a honest explanation of what occurred, reparations for the damage done, and an explanation as to how the mistake will be avoided in the future for other patients. I didn't want her to accept blame; I simply wanted her to recognize what I had been though and I wanted her to stop victimizing me further.

Today I feel ok. I am hanging out on my bed making a bunny towel for my nephew and plan to watch a couple episodes of Boston Legal. I think I am recovering well from last week's incident and I can feel hope creeping back into my psyche. It's nice to have it back.

Tuesday, July 22, 2008

I Do Do

When Amelia began exerting her toddler independence she walked from one activity to another, "I do do." Opening doors, feeding her brother, dressing herself, whatever the task, she made it clear that she wanted to be in charge. When my brother Mark came to visit us, he mimicked and indulged her all week, much to her delight, "Ok, you do do."

My new nurse came yesterday and filled our brains with information, our arms with reading material, and our hearts with the belief that I am safe now. The dietitian accompanied her and together they were a united force of support and reassurance. The nurse taught us everything we needed to know, but realizing how shaken we were by the embolism, she offered to come twice a week to change the hubs until we felt ready to tackle it again ourselves.

When I awoke today the tired, achy feeling was back. After gaining weight on the first two weeks of TPN, I lost 1.5 pounds last week in the wake of the embolism. "I can't go backwards," I thought to myself and got out of bed. I dressed and ate some jello while Aidan read me a story.

My TPN finished while Bill was taking the kids to camp. He had made me promise not to unhook myself. Thus far, he has done everything because of all the wounds on my hands. But I really wanted to do it myself. I washed my hands and then realized that I need to unzip the bag to turn off the machine. So I unzipped the bag. Then I gathered all my supplies, opening each saline and heparin flush wrapper and setting out the alcohol pads. I cleaned my hands again. Bill was taking forever and I wanted to get this "first time" over with. I considered just doing it, but I knew he would be upset with me so I just waited patiently.

When he finally arrived home, I informed him that I wanted to disconnect myself today.

"You are going to hurt your hands."

"No I won't. You can watch, but I need to do this myself."

It took me a lot longer than it takes him but I was able to do it perfectly well. I realized afterwards that I just needed control over some small aspect of my care to boost my spirits a little.

There's the saying about giving a man a fish versus teaching him to fish. While there is the obvious meaning that giving someone a skill upon which they can rely to meet their needs enables them to become self-sufficient in a very literal way, there is also the underlying idea that successfully meeting our own needs creates a sense of empowerment that fosters continued self-reliance, one the likely translates into other arenas of life. Over the past several months I have had to surrender many of the roles that fueled my sense of empowerment, leaving me feeling helpless and useless. I needed to take responsibility for disconnecting my TPN because it is among the few things that I can do and, psychologically, I need to indulge my independent streak wherever and whenever I can.

Now I know why Amelia was so emphatic and relentless with her "I do do." The "Terrible Twos" aren't terrible; they are merely inconvenient for parents and others who have to deal with willful toddlers. Yes, we parents can do it faster and neater and better but that is not the point. That feisty little two year old is just beginning to tackle the delicate balance between independence and cooperation. And my guess is that I am not the only one still trying to strike that balance ...

Monday, July 21, 2008

Nature's Call

I promise this will be my last post on this issue ... at least for a while. I started writing this last Monday but then never finished it. Today I thought I'd give all of us a break from negative emotions. I think of it as a baby step in my recovery from last week's trauma.

Despite growing up in a city, I had the great fortune of living only 1.5 blocks from Pennypack Park, a 1600 acre park with miles of biking and hiking trails. When Aidan was two and a half, we took a trip to Philadelphia to visit my family. One morning, Bill, my father, the kids, and I went for a walk in Pennypack. As we wandered along I reminisced about the happy moments I spent there walking with my father and Uncle Snowy, picking buttercups for my mother along the way. To this day I consider buttercups among my favorite flowers because they remind me so much of walking with my father and his beloved brother.

Well into the walk Aidan told me he had to pee. Because he was potty training I did not want him to have an accident. "No problem, buddy," I said motioning to the bushes, "You can just go over there." "But I'm not a doggie," he replied with a doubtful look. Bill balked at the idea of having him pee in the bushes, which I thought was a little weird for a guy. I mean, really, wasn't it Bill's job to teach his son to piss in the woods? Dismissing Bill's qualms, I took Aidan's hand and led him to the bushes, defending myself, "You'll never get him home in time." And, there and then, I taught my son to squat in the woods.

Last Monday we camped on the beach for most of the day. At one point I needed to heed nature's call. I started back to the house and entered the path leading to the street. About three-quarters of the way down the path I realized that I would not be able to walk all the way to the house in the midday heat. The path was surrounded by enough vegetation to give me some cover. I felt my pocket and, to my luck, I had a tissue. Off, I scurried off into the bushes.

I pulled down my pants and tried to balance myself on the slope of the dune. That's when I began to reflect on penis envy. I used to tell my college roommate, "You know God has a sense of humor when you look at a penis or a platypus." To me, penises are just the funniest appendages. When I had my second feeding tube I found it highly annoying to have several inches of tubing that I had to stuff into my clothing and I actually experienced penis sympathy. How annoying it would be to constantly have that thing hanging between your legs. Of course, unlike my feeding tube, penises have that dandy retractable feature. But when it comes to pissing in the woods, I have major penis envy. For men, all the world is a toilet. When I was in Nairobi, men would be lined up along Uhuru Park nonchalantly taking leaks while they waited for the bus. Men can point and shoot without fear of peeing on themselves. And there is never a line for the men's bathroom.

So there I was not quite hidden behind a small tree, perching on the down slope of a dune. Trying desperately not to pee on my clothes, shoes, and feet, I relieved myself. I managed to avoid my clothes only. So I walked back to the beach and cleaned my hands, feet and shoes in the ocean. (And I did throw my tissue away in a trash can, no worries). "Boy, Mommy, that was fast," Amelia noted upon my speedy return. "Oh, I didn't make it to the house. I just peed along the path," I explained. "Oh Mommy," Amelia replied rolling her eyes.

Amelia seems to have inherited my mother's ladylike gene. Apparently that gene skips a generation because my grandmother rode horses bareback and used to say, "I can work like a man. The only thing missing on me is a pair of balls." It probably sounded much nicer in Italian, though. "Weren't you worried about people seeing you pee?" Amelia asked.

"It was that or pee my pants. I decided to take my chances."

Amelia shook her head at me. "You'll do it someday too. Ya gotta go when ya gotta go," I assured her. And I am probably one of the few mothers who looks forward to teaching her daughter how to squat in the woods. Of course, I need to master it myself first.

Sunday, July 20, 2008

The Aftermath

When I decided to start this blog, I promised myself I would be honest about my experiences. Sometimes that means sharing aspects of my life that I prefer to hide. But I truly believe that the only way to help other people facing difficult life circumstances is to be honest about our own experiences. So I guess I will just bare all.

Driving back to Durham from Emerald Isle, I started to feel the weird sensation in my arms again. The depression comes over me like a grey film covering everything within view. I kept looking out the car window for something beautiful, but I couldn't even focus my eyes. I took a Xanax and fell asleep for about 15 minutes; the combination of the two was enough to preempt the brewing emotional storm.

Earlier in the day I dumped the entire contents of the Xanax bottle into my hand, looking for a half tablet. As I stared at the pile of circular white pills in my palm I thought to myself, "It would be so easy. It would be so easy to take them all and just go to sleep."

I thought back to a man I dated in my early twenties, an extraordinarily brilliant man deft with the English language as well as an incredible scientist. Though I think he honestly loved me, he had built such massive walls around his heart that it was nearly impossible to draw close to him. He spoke little of his past and all I knew was that he was one of three children and that his mother had died. After months of dating I casually asked him one morning, "How did your mother die?" We had been lying on my bed just chit-chatting, enjoying a lazy morning curled like cats in the sunshine coming in through the windows. He stood up abruptly, "She killed herself and you ask too many questions." He left the house and I didn't hear from him for days. I never broached the topic with him again, but in the months we spent together I slowly came to realize that his mother's suicide left a wound so deep and raw that it still had not healed some 12 years later. Knowing what a maternal suicide can do, I poured the pills back into the bottle and put it away. I could not do that to Bill or the children.

We arrived home to discover that our cleaning lady had come earlier in the day and the house was in a pristine state. What a gift! We unloaded the bags, put away the food, and put away the clean clothes. I was exhausted from the clean-up at the beach and the re-entry process so I excused myself and lay down on my bed. I felt better in my own house, away from the scene of the crime against me.

When I was a kid my mother's gauge for whether we were well enough to return to school post-illness was fighting with our siblings. Once you got into a tussle with someone, you went back to school the next day, "You are well enough to fight, then you must be well enough for school." Using my mother's reasoning, I must be getting better because Bill and I really went at it last night (And you thought we were so lovey-dovey all the time!).

I don't even know what precipitated it. I think he was yelling at the kids, because like most kids, they can be incredibly annoying and uncooperative at the most inopportune moments. With the limited voice I have I keep coaching him, "speak nicely," "there are just being kids," "be patient." But, let's face it, Bill pretty much feels like Job these days. He is exhausted beyond description physically and emotionally. By the time the kids were in bed, Bill and I were going head to head. He was complaining about his exhaustion while I countered that he doesn't appreciate how hard I try to do what little I can, "I made the bed at the beach today. It took me ten minutes and I had to lie down twice in the process, and I swept the floors and cleaned the kitchen"

"Then why did you do it?"

"Because you cannot do everything. I wanted to help you. And you didn't even say thanks."

"Yes, I did."

"No, you didn't."

You think we'd be way past pettiness by now, but it still creeps in now and then. And I admit that I am a dirty fighter; It's the Italian hot head in me. "You know what Bill," I pause taking precise aim, "If your life is so horrible, why don't you get a hold of some morphine and infuse it into my catheter while I am sleeping. That way, we will all be put out of our misery."

"You know I don't know what to do. One day you one to live; the next you want to die. I don't know what to do. I am trying to help you."

What about my ambivalence is difficult to understand? How can he not appreciate my quandary? "You watch me cough everyday. You hold my head while I am puking. I cannot walk up a flight of stairs without being winded. I cannot dance, sing, or sometimes even talk. Making dinner exhausts me so much that I feel like I have run a marathon and I no longer have an appetite to eat it, but I make it out of love for you and my children. And that is one of the few moments of joy I can count on most days. For 6 months I have been trying to find every speck of joy and beauty in this shitfest I am living in and then, out of the God damn blue, I get an air embolism that has shaken me to the core."

"You're right Bill. I don't know if I want to live or die. it changes every day, every hour. This is not a life; it is an existence. And I am not someone who ever merely existed."

Proceeding as if we have the energy to deal with self-inflicted suffering to our union, We continue our duel with our lunges and parries. Then in a rare strategic move I forfeit and walk away.

He comes to me later, when I am lying in bed. "In the past you have asked me to give you permission to die and I have refused. I realize now that I have no right to refuse you. I wanted to fix it; I wanted to make it better. I still do ... I still have that hope. But you have suffered enough and, when you decide it is time to go, I will respect your decision." The tears that usually just well in his eyes flowed down his cheeks. It is the closest I have ever seen him come to sobbing.

I know how hard it is for him to utter these words not only as my husband but also as a physician. At the age of ten, Bill decided to become a doctor when a physician finally diagnosed his youngest sister, who was essentially dying of malnutrition, with celiac disease. When I met Bill he told me the story, "I wanted to be like that man who made my mother so happy and saved my sister's life." His "failure" to heal me strikes at the core of his being. It is the ultimate form of impotence: to be a physician and unable to save your dying wife.

We talked more about where we go from here. We decided to leave everything unchanged for now: daily TPN, food as tolerated, one foot in front of the other, one day at a time. Then we fell asleep, side-by-side, holding hands and holding on, once more, for dear life.

Saturday, July 19, 2008

Barely Treading Water

It's Saturday morning and we decided to leave the beach today, one day early. While I have been able to get out of bed, dress, and participate in some of the days activities since Tuesday's disaster, my emotional state is incredibly fragile. I cannot stop thinking about the open purple catheter, the swooshing of the air into my heart, and the panic in realizing that I was going to die.

"But you didn't die," I keep telling myself when the feelings overwhelm me. Somehow that reality is not helping. The single biggest reason holding me back from doing TPN was to avoid more medical drama; in less than two weeks I almost died. I've lost all my faith and hope, and I have no idea how to get it back.

I have to admit that prior to the last 7 months I never really understood depression. Certainly I experienced moments in my life when things were not ideal, but I was always able to find some hope and joy in every day. I also had more coping mechanisms at my disposal in the past -- running, hiking, singing, etc. -- none of which are available to me now. I knew I had hit the depths of depression when I no longer wanted to read, one of the few of my favorite past times still available to me. I was just climbing out of the depression in the last couple weeks, hopefully that the TPN would make a difference, when the embolism happened. And now I feel lower than I have ever been. I cannot even figure out how to cry. It takes all the strength I have to appear functional in front of the children and to help Bill in whatever small ways that I can.

We walked down to the beach after dinner last night. I sat in the sand while Amelia rode the waves on her boogie board and Aidan and Bill played in the surf. "They are ready," I thought to myself. In some ways I think the last 6 months served several purposes. First, it gave me the opportunity to prepare in my own way for my death. The children's nests are nearly done. All that awaits me is the difficult task of writing their birthday cards for each year. And Aidan's scarf ...

Second, it has given Bill time to transition to being a single parent. He does most everything these days and, once he no longer has to take care of me, he will be able to function well as father and mother. He is smart enough to know when he needs help and he has learned how to ask for it over the past several months. I don't think this line of reasoning -- that they will be better off with out me -- is a depressive cognition. I want a better life for them; it is that simple.

Lastly, it has given me the chance to accept that my life's story is going to be a short one. With this realization I have had time to reflect on these past almost 40 years and thankfully realize that I have few regrets.

So why didn't it end Tuesday? I don't know, but I hope that perhaps God/the fates intervened so that I did not die in a way in which Bill might have blamed himself. Or maybe I am not done and I need to figure out, once more, how to crawl out of this hole. And I will try to think about all the other people out there who, like me, struggle against the formidable beast of depression and hope that they too figure out how to slay her, once and for all.

Wednesday, July 16, 2008

I Am a Catholic. Please Call a Priest

On Monday afternoon, the kids fell asleep in the shade of the beach umbrellas. Bill and I walked down to the surf to be alone. These days our conversations waffle between our usual "Gracie Allen and George Burns" routine and frank, heart-wrenching conversations about the future. Watching him plan and pack for the trip and play with the children on the beach while I watch from my chair, I realize that I am watching the trailer for a life in which I no longer play a part. "Does it feel like that for you?" I ask. "Of course, it does," he responds with far more honesty than I expect from him. His optimism is waning as is his strength. "Out of a 100 times of asking myself, would it just be easier to let her go? 99 times the answer in 'No.'," he explains, "It's still worth fighting for."

The water rhythmically rushed in, providing refreshing albeit brief moments of relief from the sultry heat. And as the water rushed back out to sea Bill and I sank in the sand. It is a metaphor for our lives, vacillating between standing on terra firma and sinking on unstable ground.

Monday night before going to bed, I uncharacteristically placed the kids breakfast dishes on the table and left the a note, "Good Morning!" They do such a great job these days of letting Bill and me sleep-in.

When I woke on Tuesday, Bill decided we should change the hubs at the end of my central line ports before joining our kids for breakfast. The nurse had not informed us to change them, but Bill noticed replacement hubs among the supplies and asked the pharmacist about them. She told him they should be changed once a week.

My central line is a special catheter placed in my subclavian vein which goes into my superior vena cava, one of the two major vessels that brings blood into the right side of her heart. My TPN flows in through this catheter. We were given almost no hands-on training on how to manage this line. And, over the previous two weeks, I found myself correcting the nurse on her sterile technique on multiple occasions. Last Thursday we finally requested a new nurse to start after our vacation. Despite the lack of training, Bill and I have been managing fine with the daily line flushes, TPN administration, and dressing changes. We didn't think twice about changing the hubs, both of us failing to realize that the hub contains a valve that keeps air from flowing into the tubing should the clamp fail to be closed. You see where this is going ...

Bill removed the hub and turned to get an alcohol wipe. Suddenly I heard a rhythmic swooshing sound. "That's not right," I said to myself. "Bill, I don't feel well," I muttered. In the next moment I realized aloud, "Oh my God, the tubing is not clamped." I tried to reach up to clamp it, but I fell off the bed and rolled onto my side. As I was slipping off the bed I thought to myself, "I have an air embolism. This is it; I am going to die." I remember only two other moments, Bill yelling at me, "Stay with me!" as he dialed the cell phone and then him drawing blood back to try and get the air, which of course, was long gone into my lungs.

Here is Bill's account from there:

"She turned completely stark white in 1 second and fell to her side onto the ground. She had a blank look in her eyes, I felt
a greatly diminished pulse, shallow respirations, and she was turning blue and not moving. I clamped the near end. I was yelling at her to stay with me and called 911. I turned on a nearby fan to try to act as blowby oxygen in her face. The ambulance luckily came in a few minutes and I told them I was an MD and grabbed the oxygen and started the non-rebreather on her immediately. She started to come around and eeked out that she could not feel her left side. The ambulance crew and myself got her down the stairs to the ambulance and I asked her to squeeze my hands and both sides seemed equal (yet weak). She was slowly starting to talk but did not know who I was."

I have no recollection of anything after Bill dialing the phone. I awoke, about 20 minutes later in the ambulance, flanked on either side by two sweet white-haired Southern gentleman. "I cannot feel my right arm," I told one of them, fearing that I had suffered a stroke. But as we drove on, the feeling returned. "I have a central line, but I don't know why." I was so confused and terrified.

Through the window of the ambulance I could see Bill driving in our Blue Saturn. And slowly my memory of the morning's events started to come back.

We spent most of the day in the ER. The staff at Carteret County Hospital and the EMTs were wonderful. A social worker entertained the kids for much of the morning until I was stable. Then Bill bounced between me and the kids in the family room as we waited for test results to be certain I did not have a heart attack and that the air had cleared my heart and lungs (this sounds weird but air is NOT supposed to be on the blood side of the capillaries in your lungs).

In the early afternoon, one of the EMTs popped his head into my room. "You're lookin' a little better," he said in that drawl that I have come to love. Then he looked at Bill, "She must be something else. You know what the first thing she said was when she came to? 'I must have been a son of a bitch in a past life.' She made me laugh." And, in a way, it comforted me to know that I was still me even in life's darkest hour.

When I was young I remember these wallet sized cards that read "I Am a Catholic. Please Call a Priest." I used to joke about them. I figured it I were in a situation where someone was rifling through my wallet, I either needed a doctor or a police officer. On Monday, however, I asked the nurse, "Do you have a chaplain?" It's my new favorite health care question. She assured me that they did and went off to fetch him.

He arrived shortly thereafter and prayed with Bill and me. We could hear the kids beating on each other so Bill left the room. I told the chaplain that I felt like God was picking on me (I did not say fucking with me b/c he was too much of a Southern gentleman to deal with my candid Yankee potty-mouth). And I cried and cried because I am just so tired of being sucker punched.

After I was released we piled into the car and drove back to the beach house. The kids fell asleep almost immediately, spent from the day's events. About 15 minutes into the drive I turned to Bill, "My goodness, this is a long way. You must have had your heart in your mouth." He explained that when he realized that the ambulance was not speeding and he could see little movement in the back, he assumed that I had stabilized. But the exhaustion on his face told a different story.

Yesterday I rested for most of the day. In the afternoon we took the kids to ride go carts, and I watched from a bench nearby. Later in the evening, Aidan and I walked to the beach and watched the pelicans flying low. Bill and Amelia caught up to us minutes later. Amelia ran in the surf while Aidan built a sand castle with a complicated wall system to keep out the water. Of in the distance, I spied dolphins jumping in the water. One more day ...

Last night I had a flashback to the event with my arms going numb again. I went to bed and eventually fell asleep only to wake today feeling terrified. One of my friends, a therapist, managed to get me out of bed and dressed via cellphone. I'm going to try and eat something and meet the family at the beach soon.

I feel like I have spent the last 6 months learning to put one leg in front of the other and, just when I get steady on my feet, some huge and malevolent force comes and knocks me over. I don't know how much more I can take but I really am trying, again, to do this one day, one hour at a time.

Monday, July 14, 2008

Nothing Gold Can Stay

I should have known: The internet is everywhere. And like two crack addicts looking for a fix, Bill and I paid for a weekly subscription. We're pathetic.

I suppose it was the reference to C. Thomas Howell in Thursday's post that made it spring to my mind. After a 20-tear hiatus from my consciousness, the words moved front and center Friday morning.

Nature's first green is gold,
Her hardest hue to hold.
Her early leafs a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

Like many kids in my generation I was introduced to Frost's poem not in American Literature class but in S.E. Hinton's book The Outsiders. It is the first book that I remember reading that had darker themes: the three brothers struggling to raise themselves after the death of their parents; the clash between the haves and the have-nots; and the harsh, cold reality that life simply is not fair. While I loved the book, I found it profoundly depressing. And when the movie version came out my freshman year of high school -- complete with a cast of handsome young rising stars -- I happily went to the theater armed with a package of Kleenex, ready for a good cry.

Once the poem was unleashed from the recesses of my brain, I could not stifle the internal recitation of this haunting verse. All day Friday and Saturday, the words kept coming to me during otherwise silent moments.

On Sunday Bill packed the car to the gills and we headed to Emerald Isle, off the coast of North Carolina. I kept thinking back to three years ago when I was strong enough to take the kids to the beach myself, without blinking an eye, and now I needed Bill to do almost everything to make the trip come to fruition. The drive was easy and the kids fell asleep in the backseat, allowing Bill and I to speak freely. My cough was mysteriously AWOL. At one point I popped the Dixie Chicks' Fly into the CD player and when Track 3, Closer to You, came on I sang a loud. It was just barely above a whisper, but it felt so good to sing in the car again; it's been so long.

After we settled in and had dinner, we headed to the beach for a late evening stroll. It was probably 1/4 mile at most from the house to the actual sand, but it was a lot for me. And I found the walk on dry sand exhausting. A strong ocean breeze made the night chilly and I hunkered down behind Bill to avoid the draft coming off the sea. Leaning my head against his shoulder, I watched the kids searching for shells.

A luminous three-quarter moon hung high in the clear sky and the sun lay low against the horizon somewhere across the bay. All around us, everything was cast in varying shades of blue-grey. Amelia looked like a grown girl except for the pink bucket swinging to and fro. Aidan, with his wild mop of unkempt hair, looked like a future surfer boy. It was a serenely beautiful moment. I lifted my head off Bill's shoulder and recited the poem, "Robert Frost, I think." After the words left my mouth I realized that I was experiencing a golden moment. In that span of time on the beach everything was perfect: the kids were happy and carefree, Bill and I were in each other's embrace, I could breathe well enough, the ocean lapped at the sand. I wanted it to last forever.

But the point is, golden moments don't last. That's why they are golden.

I remember holding Amelia when she was near her first birthday. I had been witnessing all her milestones, rushing from one to the next excitedly. That evening I gazed at her and realized that the vestiges of infancy were leaving her little face. "No, wait, what did you do with my baby?" I thought to myself, "I don't want you to grow up yet." Rocking her I tried to seal the memory of her in that moment so I could go back and visit it in the future. I was smarter with Aidan; I wanted him to take his time becoming a big boy. But like his sister, he grew up too quickly as well.

There were many times along the way when I wanted to freeze time. When a simple moment, like making cookies and singing along to Norah Jones or dancing all together in my bedroom, felt so exquisite that I wanted to stop time. But the passage of time is insatiable and unstoppable, the moments quickly float into and out of our lives, leaving a memory, a photograph, a journal entry, or a video behind. But the moment, the experience of it is gone, forever.

It is heartbreaking, no? I have been mulling the thought over all day today and I have decided that it isn't heartbreaking. Just as spring's gold gives way to verdent shades, gold returns in the flowers of spring and summer: daffodils, sunflowers, cannas and the like. The hue may vary but gold comes and goes. In autumn she returns again in the aspens and poplars. And even in the dead of winter stars burn bright on clear cold nights. Gold is a fickle mistress, she comes and goes sometimes predictably and other time unexpectedly.

I let the golden moment end, knowing there are more to come. There always are.

On Monday we sat together under our beach umbrellas and ate lunch. I eyed Aidan's jelly sandwich, "Have you ever considered putting peanut butter on it?" I asked. "You know I tried it, like 10 times, and liked it. And then randomly one day I didn't like it anymore." We giggled together. I loved his use of the word "randomly," spoken just life the offspring of a pseudo-statistician. We finished our lunches and everyone except me settled into a post-prandial coma. Everything was calm and still, belies were full, minds were at ease.

I busied myself with a surveillance project. Nearby a ghost crab was building a tunnel. Every few moments he would scurry out of hole. The cartoonish creature with its periscope eyes would rush about 18 inches, dump the sand off his claw and then scurry back to his hole. Carefully tapping around the hole with his claws, he would then drop almost instantaneously back into his hideout. He was a fascinating little fellow.

It was a golden day filled with golden moments.

I remember crying to the nun who led our school glee club at the end of my senior year. I didn't want high school to end; I had been so happy in the walls of that school and that period of my life. I remember her exact words to me, "If you stayed here you would stagnate." She promised me that many happy moments awaited me and, indeed, she spoke the truth. Tempted as we may be to freeze time, doing so would lead to self-deprivation. The only route to golden moments is to let each one slip away leaving our hands free to grab the next.

Sunday, July 13, 2008

American Girls

I hope I don't offend those American Girl devotees out there. I like the historical concept; it's the marketing I hate. Also, I will be at the beach for a week with no email access (how will I survive!) so don't worry I'm ok just sunning myself, TPN and all.

I first heard about American Girls when I was in downtown Chicago with Marie and Sue. Sue was already hip to the phenomenon that was sweeping the nation. As with most things new and trendy, I was oblivious. I still use a paper calendar and address book for God's sake. Sue wanted to pick up a few souvenirs for her girls and, given that Chicago has one of the few American Girls stores in the country, she decided to get them there.

As we approached the store, I craned my neck to get a gander at the three story behemoth doll store before me. Clearly I was about to witness the ultimate marketing achievement in the history of the doll industry. Even Cabbage Patch Kids didn't come close to this; they settled for the lowly shelves at Toys-R-Us.

Marie, Sue, and I entered the store and went our separate ways. I marveled at all the dolls, doll outfits, matching outfits for doll owners etc. I liked that the dolls were each from a different historical period in American history. (Side bar: When I explained the historical period approach to Bill he said, "So there's like 100 dolls." "I said American History you goober. We haven't had 100 periods yet. My God what did you learn at Notre Dame?" I replied shaking my head, "Yeah, I hear they are coming out with a new one "Cro-Magnon girl" (though I realize that was Europe) or maybe they could try "Anasazi girl."). I tried to ignore the unbelievable price tags and focused my energies on the books that tell the stories of each doll, giving a sense of life during that historical period.

Then, I had to pee.

So I went downstairs to find the restroom. I walked past the stage where they put on "American Girl" shows and it started to feel a little creepy. Then while I was heeding nature's call I noticed a hook in the stall, specially designed to hold your American Girl while you went to the crapper. I marveled at the perfectionist tendencies that clearly went into the design of this most capitalist of establishments. Then I started thinking about the dirty hands picking up the hanging dolls and decided they clearly weren't perfectionist enough.

When I returned upstairs I found Marie. never one to mince words she asked, "Can you believe this place?"

"Yeah, it's a litttle scary. I like the books though."

"There's a tea room upstairs where you can eat with your doll and a beauty parlor for the dolls," she continued sounding as if she feared for the future of mankind. I stared at her dubiously. "I am not shitting you." However dismayed Marie and I might have been, we were clearly in the minority. The Chicago American Girl store was a hopping place. Apparently my socialist gene is a recessive trait.

As far as I knew, Amelia had no idea American Girls existed and I planned to keep it that way. Then this past Christmas she gave me her Santa list. Amelia's list always has only three items. "He always bring more than I ask for," she reasons. And the lists are always so cute: one year she asked for a doll, flowers, and a lollipop. Another year she asked for, among other things, an eraser for her dry erase board. There, at the top of the 2007's list, was "An American Girl." I really did not want to venture into this territory, but how could I not give her one of the only three things she requested? We had along talk about the expense of the doll and that Santa had a limit on what he could bring each child. She agreed that she was wiling to receive fewer gifts in exchange for the doll. We spent time on the American Girl website so she could select one and I could email Santa's head elf her request.

On Christmas morning she was delighted to unwrap one particular box and discover Felicity waiting inside for her. And I was happy because she was happy.

She recently got some money for her birthday and wanted to buy another American Girl doll. Honestly, she doesn't play with the one she has all that much. Again, we had a long talk about the expense and whether she was sure that's what she wanted to spend the money on. She gave it some thought for a while, perusing the American Girl catalog, which comes cleverly addressed to her. I encouraged her to get some more of the American Girl books, which she enjoys and function nicely as historical novels. "Maybe I can just get her accessories," she offered. "That sounds like a good idea," I replied, "And when I feel up to it, I will make her some dresses with some leftover material that I have."

When the American Girl movie came out I groaned, knowing I would have to take her. A friend picked us up Wednesday evening and we all went to see it (TPN bag and all). And I have to admit, the movie was sweet. It reminded me, in some ways, of my father's depression era stories (he's almost 76). I was pleasantly surprised. Stanley Tucci was very good in it as was Joan Cusack (who I love for being an actress who is not Hollywood beautiful, has an awkward stance, and a funny voice yet seems to outshine everyone else on the screen, for me at least. She's like a kooky aunt.).

Plus, Amelia let me hold her hand through the movie and that would have made even a bad movie worth sitting through.

While I am talking about movies, let me recommend Wall-E. It really is not a kid's movie (my kids liked it but when I asked them what the message was they only got the bottom layer -- the love story part which has it's own important lessons) but the genius is that it was marketed as one so that parents would go see it. It is profound but simultaneously dark and sweet. Incredibly apocalyptic, hope for humanity only fully blooms as the credits roll so don't leave until the end.

Saturday, July 12, 2008

Infinite Incompetence

I returned home on Thursday to a blinking answering machine. Awaiting me was a message from "Cindy" who left her return number but felt no need to explain the purpose of her call. I was feeling magnanimous after the whole hitchhiker episode, so I called her back.

Cindy informed me that she was calling from Duke Hospital (I was going to change the name of the institution to protect the guilty but, let's face it, I live in Durham and have a rare autoimmune disease where else would I get my care?). I immediately felt my eyes rolling in my head. "You have nine unpaid balances," she explained.

"I get a different bill from the PDC (Private Diagnostic Clinic) every other week, The amounts are always different. I never know if the bills are cumulative or separate. Then I get a refund check out of nowhere. It is impossible to figure out what I owe you."

"Actually I am calling from the hospital."

The clinics and hospital have separate billing systems just to keep it all interesting. "I've only received two bills from Duke Hospital in the last 6 months and, again, I do not know if they are cumulative or separate." Then I had an idea, "Look, I want to pay my bills. It would be really helpful for me if you could print all the bills, put them together in one 9 x 12 envelope and send them to me. That way I can compare them with my "Explanation of Benefits" from the insurance company, (because Duke always charges me for things they aren't supposed to charge me for) and pay the correct amount.

"I'm sorry Ma'am, we cannot do that."

"What do you mean?"

"We cannot print all the bills and send them in one envelope."

Somewhere in my brain a gasket blew.

"Are you kidding me? Can you explain this to me? You physically cannot print the bills? You don't have any 9 x 12 envelopes? You cannot stuff the bills into an envelope? What is it that you cannot do?"

"It's not our policy to do that."

That's when I lost it.

"I continued to be amazed by the infinite incompetence of this institution. It's as if you actually do not want to be paid. Here I am with a life threatening illness, being fed by a tube to stay alive, and I have to deal with this nonsense from this place. All I am asking for is all my bills in one envelope to I can pay you."

"I'll have to get permission from my supervisor."

"Then put your supervisor on the phone," I said through gritted teeth. Twelve years of dealing with this and it still astounds me. How can something so simple be made so incredibly complicated. "I'll try to find her," She responded. First she couldn't find her, so I waited patiently. Then she found her and said she'd be right on the line, but that never happened. "I'm sorry she seems to be on another call," Cindy responded. Finally Cindy came on the line and told me her supervisor had given approval to send me all my bills in one envelope.

Lest you all think I am some evil ogre, I want you to know that I did at one point tell Cindy that I understood it wasn't her fault. "I'm just so tired of this," I explained.

"So I will take care of that and you should receive it in 7-10 business days," Cindy informed me before hanging up the phone. I guess someone is walking it here or, perhaps, sending it by carrier pigeon from Outer Mongolia.

Thursday, July 10, 2008

The Hitcher

When I was in graduate school an acquaintance of mine once casually mentioned that she picked up hitchhikers on a routine basis. I thought she was deranged. She was only slightly bigger then I was and clearly defenseless. Didn’t she ever see The Hitcher? Didn’t every girl my age see that creepy film just to watch C. Thomas Howell? After one viewing of that film, I never once considered picking up a hitchhiker.

Today I was on my way home from my psychologist appointment. Just let me digress for a minute here. Yes, I have a psychologist, and a psychiatrist, and a biofeedback therapist, and another counselor, and I routinely cry on the massage table. I also take the world’s smallest dose of Zoloft (we have to dilute the liquid for to get me a 2mg dose because any more than that I get anxiety side effects). I really think it’s high time for the whole mental health stigma to get kicked to the curb. Why do people act as if misfiring neurotransmitters are somehow different than flawed islet cells (pancreatic cells that make insulin)? Mental illnesses are just that: illnesses. And diseases like depression, left untreated, worsen other chronic illnesses and can lead to alcoholism and drug abuse and a myriad other problems. And, yet, insurance puts these illnesses into a separate category, often “carving out” the policy to another company who gives you 20 visits to clear up your issues. Great, 20 visits should take care of all my anticipatory grief. Three words for the US health care system: mental health parity.

Ok, I am off my soapbox now.

As I was exiting I-40, I noticed a young man, about 22 or so, jogging along the side of the exit ramp. “That’s weird,” I thought to myself, “Why would anyone jog here?” As I drew closer and looked at his clothes I realized he was not jogging just running but where to and why? Honestly, I forgot about him in the next millisecond.

While I was stopped at the red light, the young man appeared at my passenger-side window. “Maam, I ran out of gas at the beginning of the exit ramp. I was going to run to the gas station but the sign says it is 1.1 miles away. Could you give me a lift?” I had about a second before the light changed. I looked him over. He looked like the average 22 year-old, had no backpack, and did not appear to be carrying any obvious implements of destruction. I drive a 2004 Saturn Wagon so he clearly was not after my car.

I had just spent the first half of my therapy session talking about the Bible verses I highlighted in the kids’ future Bibles. My favorite verse is Matthew 25:35 “For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink; I was a stranger, and you invited Me in.” To me, this verse points to the reality that we are all divine and that caring for our fellow man is, indeed, caring for God. Having just extolled the wisdom of these words I could hardly turn the young man away in what, I hoped, was his moment of need. Suddenly I found myself saying, “Sure, get in.”

Then I started talking to God. “Dude, seriously you have got to stop fucking with me.” Yes, this is how I talk to God. It’s hard to justify this because I will not let Aidan call me “Dudette” as he loves to do. But I feel like I just need to be real with God. And he seriously needs to stop fucking with me. I housed a homeless pregnant girl, had a lot of parties where I gave people food and drink (granted much of it was fattening and alcoholic), I donate to the NC Food Bank, etc. I have tried to see God everywhere so must I now be asked to pick up hitchhikers?

“I’m Michelle,” I said reasoning that he would be less likely to kill me if he new my name. “Travis,” he answered back. We had a polite conversation about the fact that he and his “girl” were traveling to Kentucky to get her dog from her mother. We arrived at the gas station and I told him I’d wait and take him back to his car. I watched him. He hurried into the store and bought a red gasoline can then rushed off to fill it with gas. He hopped back into the car and we continued with a little conversation. He was trying to make the round-trip fast enough to make his little brother’s birthday celebration later that evening. It was 11 am; I didn’t see how that could possibly happen.

“How do you know he isn’t a homicidal maniac?” my fearful voice asked. I tried to figure out whether there was any possibility that I had played into some elaborate scheme that still awaited me on the exit ramp. I couldn’t conjure up any scheme at all let alone an elaborate one so I just continued on with praying.

“You can let me off here,” he said, motioning to the east exit ramp, “I’ll just cross the highway.”

“No, thanks. I am not interested in being an accomplice to your death. I will go down to the next exit, turn around and take you to your car.”

He stopped talking and reached into his pocket. On a sleek little cell phone (can they get any smaller?) he called his mother. In that moment, I knew I was in the free and clear. I smiled to myself, “There will always be someone there to mother you.” I have promised my children this. And in the car today, I was mothering someone’s little boy, now all grown up, while she spoke to him on the phone.

“Careful pulling up to the car,” he directed me, “The shoulder is rocky.” He got out of the car and then appeared at my window again, this time with a piece of gum to quiet my cough. “Thanks,” I said reaching for the gum, “I’ll wait until I know everything is working.”

I used to say that I somehow escaped the whole Catholic guilt thing, but over the last several months I realized that I just didn’t feel guilty about premarital sex. My Catholic guilt is everywhere. Today I told my therapist that I felt guilty about all the money being spent to keep me alive: around $1500 a week. Last night, as I was lying in bed, I thought about all the Africans that could live off of that amount of money. And I felt profoundly guilty. Intellectually, I know the money would never be redistributed toward them, but that knowledge did little to assuage my guilt.

The more I spoke to my therapist, the more I realized that I have always felt guilty for having more than others, even when as a young child in a very “middle” middle class family. I used to pray for the shoe store on the “Avenue,” our main shopping area, that had no customers. When I received my confirmation I sat across the church aisle from a boy who lived in the boy’s orphange next to my school. His crooked body and uncooperative legs hampered his every movement. Like me, he had a red felt shawl around his neck. Mine bore the hand-sewn letters of the name I had chosen for my confirmation name: Claire. The boy across from me was struggling to tape his letters on in time to walk up the aisle and be confirmed. My eyes filled with tears because it seemed so damned unfair: he was poor and contorted and had no mother. I had everything. And when I was in Nairobi and the children with their bedraggled dress and swollen bellies chased me through the streets, my mouth said, “Hapana! [No]” because I didn’t have money for them all and I did not want to become the Pied Piper of Kenyatta Avenue. But I wanted to say “Ndiyo [yes]” to them all. Inequity bothers me. It is the biggest barrier between me and an unshakeable belief in God. I just don’t see how he/she can let it be this way.

My psychologist suggested that I anthropomorphize the emotion a la Elizabeth Gilbert in “Eat, Pray, love.” To me guilt is a poor child with sorrowful brown eyes, a distended abdomen, and earth caked on her small feet. Guilt is hungry and cold and hopeless.

Perhaps I was born with a socialist gene. Bill reasons that I was a Bolshevik in a past life. I always thought when I stopped working I could volunteer to help the less fortunate, but now I am too sick to do that. I am too sick to do much of anything. “I just feel so guilty for costing society all this money when I am not contributing,” I finally admitted to my therapist. “What did you say?” he asked. I knew that he had heard me; he was making sure that I had heard myself. There it was: I feel useless. “I feel like a barnacle,” I muttered. Though I know it is not true, sometimes it feels that way.

The young man filled up his tank and returned one last time to my window. “Thanks again. You’re a life-saver.”

As I drove away I mulled over his choice of words. Maybe I was supposed to be in that very spot when he reached the top of the off ramp. Maybe things would have turned out differently if I had refused to help him. Maybe he would have gotten hit on the side of the road or crossing the highway. I’ll never know. Perhaps I was a life-saver today. Perhaps we all are sooner or later. We never really know, do we? And maybe that’s what The Hitcher was there to tell me.

So I will keep trying to feel like I am worth whatever amount it is costing society to keep me alive. I’ll try to dismiss the image of myself as a barnacle in the sea of life. And when guilt looks at me with her big sad eyes I’ll tell her that I have given her all I can, and I just cannot afford to feel guilty anymore.

But I will not be picking up anymore hitchhikers.

Wednesday, July 9, 2008

If You Can Read You Can Cook

Written in 2005, long but happy and not at all related to scleroderma

If food is love then my four brothers and I hit the motherlode when Claire Mayer birthed us into her life, home, and, most importantly, kitchen. My most enduring image of my mother is standing in front of the stove, all four burners on active duty. With age, she has gained a few pounds and now resembles the stereotypical Italian grandmother with the devotion, attitude and guilt minus the accent.

I grew up in a small Philadelphia rowhouse with an impossibly small kitchen. While standing in the cooking section of the kitchen, you could touch the refrigerator with your nose while touching the oven and sink with your left and right hands, respectively. Like a puppy being crate trained, the only thing you could do in our kitchen was stand and pivot. Out of that small kitchen, my mother has fed the multitudes. In fact, I am confident that, in her lifetime, she has fed more people than Christ did after the Sermon on the Mount. Granted, she had a lot more than 5 loaves and 2 fishes to work with, but I think she merits a biblical footnote at this point.

In our household, the pecking order was based largely on the quantity of my mother’s food that one could consume. With four brothers, I was licked before I ever entered the race. My brother Mark, all 150 pounds of him, once ate 32 ravioli in one sitting, a family record that still stands. My claim to fame in the family was being the “picky eater” but being the only girl, I had an alternate route to my mother’s heart.

My immediate family filled 7 of the 8 places at our kitchen table. When we were very young, my unmarried Uncle Snowy usually filled the remaining seat. After my Uncle Snowy died, random neighborhood kids then vied for the coveted space at our table. When I entered high school, my new best friend, Marie, became a permanent fixture at our supper table. My mother all but began formal adoption procedures once she saw Marie put food away. Marie not only consumed vast quantities, she waxed on poetically about the meal in between mouthfuls. My friend Kathy was Marie’s runner-up and expected to fulfill Marie’s duties should she be unable to complete her reign as the queen at my mother’s dinner table. With the face of an angel and a body like Olive Oil, no one would suspect Kathy to be a glutton, but Kathy could out-chow my brothers. After dinner she would unabashedly loosen her belt and lie on the dining room floor and moan while my mother swooned. After my friends and I left for college, my brother Keith’s high school friends took over.

But the free meal ticket was not limited to the occupants of the eighth seat. Every Christmas my mother made approximately a gross of each of 14-15 different kinds of cookies, which were then artistically arranged into foot-high piles and distributed to family members and friends. I never heard the world “potluck” until I went to graduate school, but I had long watched my mother enter parties with more desserts than had been supplied by the host. And she is a relentless perfectionist in the kitchen. She had her heart set on making small cheese tarts for my cousin Debbie’s bridal shower. The recipe called for a vanilla wafer to serve as the crust. Much to my mother’s chagrin, the wafers were too big for the mini tart pans.

We arrived at the party with the trays of literally hundreds of cheese tarts. My crazy Aunt Annette eyed the tarts and asked my mother where she found such small vanilla wafers. My mother then revealed her technique. My Aunt ‘Net, as we call her, has a gift for telling a story in such a way that she leaves you crying or running for the bathroom before you pee your pants. ‘Net climbed on top of her chair and asked for everyone’s attention. When the room quieted she launched into her tale of how my deranged mother shaved each vanilla wafer down to size using an emery board, concluding with an observation that my mother was in need of immediate institutionalization.

Throughout my childhood my mother ruled over her kitchen alone. After school my siblings and I sat at the table to do our homework while mom prepared dinner. We were never allowed to cross over into the work area of the kitchen for two reasons: first, there simply wasn’t enough room to accommodate anyone else and second, my mom was a sentry barring our access to the one room in the house with a television. For my mother, cooking was a solitary activity, her one escape from the deafening sounds and relentless activity of raising five children in a very small house. Cooking was her meditation long before meditation was hip. So despite being surrounded by food for my entire childhood I never learned to cook.

My mother believes you are either born with the ability to cook or you are not. It’s easy for her to espouse this belief as she was born with culinary talent. Perhaps it was nursing at her mother’s breast while she made the pizzas that my grandfather sold door-to-door in Tacony, Philadelphia’s less famous little Italy. My grandfather was a pizzaiole, the precursor to today’s Domino’s delivery. She must have learned a lot in those early months because she managed to whip up someone’s wedding cake without an electric mixer when she was only 10. My eldest brother inherited my mother’s gift, having successfully made a peach cobbler as a 12-year old boy scout sans recipe over an open campfire. I’m confident that the taste of the cobbler kept his fellow scouts from calling his masculinity into question. He still amazes me with his ability to whip up delicious meals without ever consulting a cookbook. Of course, he shuns baking because it stifles his improvisational culinary style. If he had been born with a sweet tooth, however, I’m sure he would have conquered that kitchen arena as well.

I was not born with this gift. My first epicurean effort was a birthday cake for my mother. My best friend Marie and I decided to tackle the project on the afternoon of my mother’s 47th birthday. Marie and I were then 15. We choose the “Silver White Cake” recipe from the Betty Crocker Cookbook because all you had to do was throw all the ingredients into a bowl, mix it up, and pour it into a pan. Even two neophytes could handle that. We mixed the ingredients and poured the batter into the greased and floured bundt pan as instructed and placed it into the oven. I was awed when I removed the cake from the oven: it had risen beautifully and cooked to a light brown color. After waiting the recommended time for cooling, I removed the cake from the pan and frosted it with canned frosting (even my mother cheated sometimes). I was so proud.

Later that evening, my family sang “Happy Birthday” to my mother and she let me serve the cake. After serving everyone, I put a bite into mouth and surveyed the expressions of my victims. Everyone was eating quietly. In an unprecedented (and as of yet unrepeated) act of kindness, my brothers chose not to seize this opportunity to tease me mercilessly. In a reciprocal act of kindness, I delivered them from their misery, “If no one else is going to say it, I will. This cake tastes like pancakes.” My brother Mark was the first to break the silence, “Pancakes are good,” he responded still shoveling it in. “Not for birthday cake,” I thought. To this day, I have never made that recipe again. That way, I can blame it one the recipe. Nonetheless, the experience was enough to dampen my fledging interest in kitchen arts.

I fell in love my second year of college with a man who already knew how to cook. Well, to be more precise, Pat knew how to grill. In the words of Rita Rudner, “Men will cook if danger is involved.” While the women’s liberation movement has brought us very far, I must confess that I felt inadequate being involved with a man whose kitchen expertise far exceeded my own. We lived in a dorm with no weekend dining service and limited kitchen facilities. The nearest grocery store was nearly 10 city blocks away, making us fairly reliant on macaroni and cheese and hotdogs from the dorm commissary. On one Saturday night, we opted for hot dogs. We pulled out a pot to boil the dogs and my boyfriend asked me how we knew when they were done. “If it blows up you cooked it too long,” I replied. Laughing out loud he asked, “So I put in a test one beforehand and when it explodes I assume the rest are finished?” I had to admit it seemed ludicrous when he put it like that. Maybe it was all my female hormones surging, but suddenly I felt a profound need to learn how to cook.

For the first couple years, the results of my culinary preparations were mixed. I bought two cookbooks: the basic red and white Betty Crocker and the American Heart Association Cookbook (I was very into nutrition thanks to a sophomore Nutrition class). By junior year, my roommate and I moved into an apartment with small kitchen facilities and my boyfriend had a car on campus, making grocery store trips a possibility. The three of us patiently endured my various concoctions, each created by carefully following printed instructions. “Why do you keep poaching the meat,” Pat asked one night lifting up the lid on the pot. I had no idea what poaching meant outside of conversation about hunting, “I don’t know. That’s what the recipe said to do,” I responded. Poached or not: it tasted fine to me.

One night my roommate Tina and I decided to try a recipe for Butterscotch Brownies. Baking cookies was tricky in our mini oven that seemed to lack a functioning thermostat -- usually, the first tray was undercooked, the second tray was perfect, and the third tray was burnt beyond recognition after about three minutes in the oven – one tray of brownies seemed like a viable option. We whipped together the ingredients and set the pan in the oven. When we removed them from the oven, they looked perfect and we beamed with pride in our ability to rise above the limitations of our kitchen equipment. We then eagerly sampled our brownies. “Tastes like chicken,” I muttered disappointed. While this is perhaps the most overused phrase in culinary history, I am confident that it has never been directed at a batch of brownies.

Fully aware that my boyfriend was due at any moment for a study break and wishing to avoid any harassment about the failed baking experiment, we tossed the batch, removed evidence of any cooking activity, and settled back to our books. When Pat entered our apartment moments later, the first words out of his mouth were, “What are you cooking?” “Nothing,” Tina and I replied innocently. Apparently it never occurred to us that the smell had lingered on. Pat moseyed over to the trash can and lifted the lid, “Nothing, huh?” I warned him of the poultry-like nature of the brownies, but he insisted on trying them himself. He grimaced with his first taste and closed the lid of the trashcan. I felt certain that I had destroyed any prospect of being wifely material.

I did improve, however. By senior year I had mastered numerous pies and cookies and managed to cook a downsized Thanksgiving feast for my beau and me. We had actually stayed together long enough for me to graduate from completely unable to cook a hot dog to capable of making a full course meal. Ironically, the wifely aspirations that motivated my desire to master the culinary arts faded and the relationship eventually faltered during the inevitable post-graduation adjustment period. But my love of kitchen arts survived. My two cookbooks have been joined by several dozen additions as well as 7 years worth of Bon Appetit magazine (I finally cancelled the subscription when I realized I could never cook every recipe I already had even if I attempted some effort to break the world record for non-stop cooking). I even own several books on food chemistry that assist me in culinary emergencies such as how to rescue seizing chocolate. And I now know what poaching means in the culinary sense. Indeed, I am living proof that even genetically challenged individuals can learn how to cook …

The bottom line is this: if you can read, you can cook. Actually, if you can read, you can learn to do almost anything. In fact I think I should adopt this as my life’s philosophy; I’m a little late in claiming it, but perhaps in time to have it engraved on my tombstone.

Sunday, July 6, 2008

Out and About

The entire TPN system is incredibly well-designed to foster an independent lifestyle with a minimum of interference from the infusion. Everything fits into a manageable albeit heavy backpack (about 7 lbs, a lot for me to carry). So there is simply no excuse for feeling home-bound by TPN. Two days into my infusion, Bill decided that I need to get out and about, TPN bag and all.

Bill and my Dad pulled a similar "tough love" approach to getting me out of the house when I had Amelia. I had a rough start with breast feeding: my nipples were cracked and bleeding. Whenever Amelia latched on my toes curled involuntarily. But I was determined to nurse her so I gritted my teeth and eventually we got the hang of it. My dad just did not appreciate my commitment to breast feeding. "You're exhausted, crying, and stuck in the house," he argued, "Just give her a bottle." My dad and I have a long history of locking horns, yet he remains completely unaware that the surest way to get me to do something is to tell me not to do it. It's a juvenile trait of mine -- my petulant inner child -- that actually serves me well much of the time.

When my Dad realized that I was determined to breast feed he devised a plan, "If you are so hellbent on doing this you need to do learn to do it in public." So Bill, my Dad and I put 2-week old Amelia in her car seat and drove to Sonoma, one of my very favorite places. They made me nurse her everywhere: at the restaurant where we ate lunch, in the park on the town square (where, by the way, there was a chicken that looked just like Carol Channing) in the 103 degree heat, they even pulled off the highway and made me nurse in a McDonald's. By the end of the day I was over any shyness I had about nursing in public and from then on I just whipped out a boob whenever Amelia wanted it. When I think about that day I smile over the two men I love most in the world who supported me in being successful at something that was so important to me. To think that my cynical curmudgeon of a father became a champion of breast feeding.

So Bill applied the same rationale to the TPN. On Friday we ran errands together, returning books to the library, renting movies (by the way, Death at a Funeral is hilarious, especially if you are into British humor), and buying dog toys. The latter errand was the most crucial because Bill spent the morning threatening to give away our puppy, Zara. While I admit that adding a new dog to the family when I was becoming increasingly sick was a huge mistake, I firmly believe that we made a lifelong commitment to her. I was in desperate need of ammunition for my intended behavior modification program so I dragged a reluctant Bill to the pet store and insisted that we buy a slew of chew toys. "These won't even last her a week," Bill complained forking over far more money than he wanted to spend.

Zara, Our maniacal dog
Photo by Amelia

Despite the fact that Zara is a pound mutt, we are 90% certain that Zara is a one-year old beagle-Rhodesian Ridgeback. Her bark and ears scream, "I'm a beagle" while her color, build, and telltale ridge along her spine leave little doubt that one of her parents was a Rhodesian. We promised Aidan a dog for his sixth birthday but held him off for nearly another year invoking last year's summer-long trip to Italy as an excuse. When we returned, we tried to hold him off given that I was not feeling well. But a promise is a promise. We made several trips to the pound. When Aidan spied Zara, he wanted her, only her. I went back to spend some time with her alone. She was a "surrender" from another family that decided she was too hyper. She was indeed hyper when I visited with her but she was very submissive, allowing me to touch any part of her body and seemed quite trainable. Bill made another trip with the kids and agreed that she seemed fine.

As it turns out she's kinda of a dopey lunatic. At the same age, Watson knew everyone's name: Mommy, Daddy, Mom-mom (yes, we are weirdos that refer to my parent's as the dog's grandparents), Pop-pop, etc. Zara doesn't even know her own name. Watson could differentiate between multiple toys. If you said, "Get your bone" then he got his bone. If you said, "Get your ball," he got his ball. Zara has no idea what anything is called. She will do her commands if a treat is involved. Otherwise, she's oblivious. What she lacks in cerebral prowess she more than makes up for in heart. She's incredibly sweet.

The problem with Zara is that she eats everything in sight. She has eaten, among other things, a check, Aidan's homework, Bill's dad's birthday card, an entire legal pad, a pack of Claritan, at least a dozen pens and pencils, etc. So Bill's ready to shove her off to Timbuktu. I tried to remind him that Watson went through a similar phase during which he ate the dry wall on a daily basis, "She'll outgrow it and then she'll be a great dog." (While the doctor was pulling my feeding tube, I made Bill promise me that he would not give away Zara when I died. Talk about manipulative!) I hoped Zara would be busy with the toys and stop tearing up everything else. She ate the first toy in about 2 hours; then she at a piece of mail. So Bill is still threatening to give her away. I told him today that if I die and he gives her away I will haunt him forever.

"What are you going to do, smack me every time I make a grammar mistake?"

"Oh no, I will be far worse than that."

On Saturday I was feeling pretty good. I woke and ate breakfast. Afterwards I made a coconut flan, which is yummy, dairy-free and has tons of calories. Then I baked some cookies for the kids.

Since I was feeling so good Bill and I braved the mall, a place that we each detest. I needed to go to the Apple store (it's probably called iStore but I am oblivious to these things) to get an iskin to cover my keypad. All this typing is rough on my finger wounds. Bill dropped me off because all the handicapped spots were taken. As I made my way to the store, I was feeling a little nervous about being out with my feeding running and the obvious IV tubing hanging out my shirt and looping down to my knees and back up to the backpack. I dreaded the stares sure to come my way from fellow shoppers, but no one gave me a second glance. Everyone was too busy staring at the guy with the Mohawk.

On Sunday I paid for all my activity. I was completely wiped out and could barely get off the couch. And I while I was dying to see the kids, I confess that I was nervous about their homecoming. Kids require a lot of energy, which is something I just do not have anymore. When they are with me, I feel inadequate as a mother. So I push myself to seem "normal" making their meals, nudging them through the daily routines, etc. After they left for their camps yesterday, I had a horrible coughing fit the left me lying on the kitchen floor gasping for air. In my obstinacy I am making things worse. Why can't I just accept my limitations? Why can't I just accept that I am doing my best?

Finally, this morning I gave myself permission to spend the day in bed. I still opened the curtains and blinds, I still got dressed and ate breakfast and lunch. I started the washer and dishwasher; I spent five minutes training Zara. Other than that I have parked myself on my bed all day. For months I have been wanting to stay in bed and rest my weary body, but I feared that doing so would frighten the kids. And that lying in bed meant that I was no longer mothering them.

What I discovered today is that I can still mother them. I used our phone intercoms to get them through the morning routine. And Bill made their breakfasts and supervised them while they made their own lunches. Amelia moved clothes from the washer to the dryer so that she could wash the sheets that she herself had stripped of the beds. All she needed from me was a little instruction. I helped Amelia remember where her violin was (at camp for the week) and reminded Aidan to brush his teeth. Being forced to do more for themselves, these two children will become incredibly self-reliant.

Former students and friends have graciously offered to shuttle the kids to and from camps and activities. I miss doing these things with the kids because I like to speak to them in the car, but I have to accept that I cannot be mom's taxi for right now if I have any plans on doing it in the future. I do what I can with them: we chat, play games, watch movies on my laptop, they have dance parties while I lie on the bed and wave my arms. And, surprisingly, they still seem happy

I was reading through the Bibles that I bought for the kids to open on a future birthday. I went through them and marked my favorite passages and while reading I came across Mark 12: 41-44, which is about a poor widow who puts two copper coins in the treasury. Jesus tells the disciples "I tell you the truth, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything—all she had to live on." I remembered it once I read it, but it is not among my favorite passages. Yet, as I sit here writing this I realize that I am a lot like that poor widow. I don't have much to give, but I give what I can and that simply has to be enough.