Day 109

Today was a hard day. Bill wasn’t feeling well. He started the day with a terrible cough: the kind that frightens me despite all my positive self-talk. I had tasks to attend to and papers to grade. It was 4:00 p.m. by the time I marked the last item off my list. I made a commitment a few days ago to go to my favorite coffee shop and write each day this week. Here I was, day 2 and already my motivation was waning. Somehow I did manage to get myself on my bike with my netbook stashed in the basket and headed for Bucer’s. By the time I reached downtown, I was certain that I would write today. I order a cup of Earl Grey and settled in my favorite spot. Surely it was a good omen: my table was empty, just waiting for me to fill the space and begin writing. First I sat for 10 minutes, just paying attention. There were college kids making too much noise, as a blender whirred in the background. Still I managed to sink down to that place of detached awareness. I was ready for inspiration. I sat the timer and began to write. I managed to compose sentences and string them together but later when I went back to read them they were flat and dull. I was frustrated with the futility of the whole situation. It took such effort just to get myself here only to find that my writing sucks. No wonder so many writers drink.

Day 108

It was just about this time last year when Kat came out. At that time she identified as a trans-woman. Increasingly since then, she identifies as just a woman. There aren’t many people who understand her journey and I have some sense of just how lonely that can be. As her mother, I long to talk with people who understand her struggles, and my own. Last night at a potluck for members of the LGBT community, I met a woman who does research on trans-youth. I told her our story and she reassured me that, although the path is not an easy one, there are trans-people who find a place for themselves in the world. She validated my decision to support Kat unconditionally and empathized with our shared struggle. On the way home I found myself beaming with pride. In spite of all the rejection and abuse Kat endured as a child who did not conform, one who was branded as an outsider, she survived. She didn’t give in to madness or drugs, like so many others. She survived and I know, despite all of my mistakes, I helped her to survive. There have been so many moments when I doubted myself as a parent, tallied my many errors, and lived in fear of the ultimate consequences. For a moment, I was able to put all that aside and recognize the success inherent in getting to this point.

Day 107

When Bill was first diagnosed with lung cancer is was a bit of a shock. He didn't, after all, have any symptoms. Yet, there it was, a large ghostly image on the film. A few weeks ago he started coughing. It progressed into the kind of racking cough that acts on the body like a small-scale earthquake. The coughing frightened me. Underneath the fear was a sense of helplessness. My habit is to respond to helplessness with anger. I would find myself getting angry with Bill when he would cough. Then I would feel guilty: What kind of horrible person gets angry at a person for coughing, especially a person with lung cancer? It was a painful cycle: coughing, fear, helplessness, anger, guilt. This little drama played itself out in my head several times a day. I had to consciously work to accept the coughing. I had to stop seeing it as the enemy in order to disarm my defense system. I am learning to accept the coughing and the cancer that it speaks for. The fear and helpless and anger are slowly being replaced by compassion. Increasingly I find myself empathizing with Bill rather than being angry with him. Maybe I'm not such a horrible person after all; I am only human.

Day 106

I was invited to a potluck dinner tomorrow. Usually I arrive at these things with some exotic dish, something that will make me look sophisticated and interesting, something ethnic like dolmas or trendy like a watermelon and basal salad. Today, I started to imagine what it would be like to show up as myself. What kind of food would I bring? I thought of those cookies they used to serve in the cafeteria at school, the ones that a kid would trade any three other items on the tray for. A heavenly concoction of cocoa, butter and sugar with just enough oatmeal to hold the whole thing together. At my school they were advertised on the weekly menu as Chocolate Dream Cookies. On the days they were served we all felt that the cafeteria gods were smiling down on us. Those are the cookies I will bring tomorrow: sweet, simple, cheap and delicious, everything I am and hope to be. Beside, it beats pork rinds and box wine.

Day 105

It was a bad combination of pharmaceuticals that left me awake at 2:00 a.m., unable to go back to sleep. I got up and went about my morning routine as if it were some reasonable hour of the morning. I opened my email to find a message from Kat. There was an attachment - an essay written for a class on the relationship between mathematics, literature and writing. I started reading and it was like fireworks in my brain, a shot of adrenaline to the cerebellum, calisthenics for my mind. The essay outlined the intersections where numbers and words converge, parallel systems of thought and action. These concepts quite simply blew my mind. For hours, I kept returning to the ideas I read before dawn. It was like playing with a top. I enjoyed watching it spin. When it would die down I would give it another whirl. I have always enjoyed playing with ideas. I sometimes think that it is nothing more than mental masturbation: intoxicating and seductive, but pointless. But other times, like today, I think that the mind is a muscle that must be stretched every so often, otherwise it will atrophy. Our brains become so rigidly programmed, a dose of the novel is just what we need to wake ourselves up.

Day 104

How much of my life has been spent waiting? Waiting to graduate. Waiting to hear if I got the job. Waiting for the results of an important test. Waiting for a letter from the graduate program I applied to. Waiting for him or her to arrive. I turned 19 a few weeks before Kat was due. The due date was marked on the calendar with a big red star. That date came and went. Kat continued to do somersaults in my uterus and the doctor joked that she would walk herself from the delivery room to the nursery if she continued to hold out. I was not laughing. As the days and weeks continued to crawl by I feared that she would never make an appearance. She was 5 weeks overdue when she was born on November 1st. I would like to say that I learned a lot about waiting from that experience, but I didn't. I have never been a patient person. Waiting is just as difficult for me today as it was all those years ago. There are times in life when we anticipate a pivotal change approaching. We can see it on the horizon. As it draws near there is fear and anxiety. What will it be like? How will I cope? It takes us out of the present moment. There have been many days of waiting since Bill's diagnosis: waiting for test results and procedures. Now we are waiting for treatment. I am trying to figure out how to do that more gracefully. In truth, I think that it can't be done. Waiting is never graceful. The only way is to stop waiting and start living. Whatever will be, will be.

Day 103

Over the last 5 weeks my thoughts have been preoccupied with various answers to a single question: What if Bill dies? My initial reaction was panic. I imagined living in our house alone, going to the co-op alone, watching television in the evening alone. It seemed unbearable. I thought about how sad and empty my life would be without his strange sense of humor and his enveloping embrace. Yesterday I met a friend for tea. Sitting in the coffee shop waiting for her to arrive I started to imagine a solo life. Would I spend my time in coffee shops, at the library, at church? Would I make new friends, take car trips, write more? Bill decided to go to bed early last night. Instead of watching television, I made banana bread and listen to NPR. I was starting to see the opportunity that the solo life might present. I have heard it said that when two people become one, you end up with two half people. I am afraid that, in many ways, that is what has happened to me and Bill. I love the time we spend together. However, I now realize that it has become unnecessarily exclusive. This morning I was reading Mary Karr's memoir Lit. She refers to her budding alcohol addiction this way: Maybe it fostered in me a creeping ambition-deficit disorder, but it could ease an ache. So anything worth doing could be undertaken later. Paint the apartment, write a book, quit booze, sure: tomorrow....Which ensures that life gets lived in miniature. Bill's cancer might just be a wake up call, an opportunity to transform our relationship once again, to move from a miniature life characterized by ambition-deficit disorder to something yet to be imagined.

Day 102

I few years ago, I ran across an obscure reference to a book titled Grav dar du star (Dig Where you Stand) by Sven Lindqvist. The book launched a movement in Sweden in the 1970s. Workers and community members began recording the history of local places and spaces. It was an effort to reclaim history by those whose voices had been previously silenced. Dig where you stand: It is more than a title to me, it is simply good advice, particularly for writers. Whenever I find myself asking: What should I write about today? I often respond with these words. Dig where you stand. In other words: What is most alive for me right now? What thoughts and feelings need to be tended to? These are the things that call out for the page.

Day 101

Bill has become increasingly tired over the last few weeks; as a result, my chore list has grown to accommodate his chores, as well as my own. Last night I carefully sorted the recycling and hauled it to the curb. Today I got up and went to the grocery store. When I returned the recycling was scattered in my own yard and the yards of my neighbors. I looked like a crazy woman chasing newspaper and empty plastic bottles caught on the wind. I came home and in a state of utter frustration and anger, responded to an email from a friend. I explained how crappy my life is right now and how pissed off I am about it. I told her that I would never be able to write from this state. She wrote back with this question: What sort of thing would you like to read that would help? Clearly, she was advising me to write that, the thing I most needed to read myself. I knew immediately what I most wanted to hear from the page. I wanted an acknowledgement that indeed life really sucks sometimes. Bill told me a story once about a woman he encountered while working in a psychiatric hospital. She was depressed, suicidal perhaps, when she told him about all of her hardships and struggles. Bill was at a loss for words and simply said, "Wow, your life really sucks." These words were not from the counselors' handbook. Instead, they were honest and real and they conveyed understanding and empathy. Life really does suck sometimes. It is freeing to write these words: no more pretending, no more trying to prop myself up, no need to put on a happy face. I can sit in my discontent and know that as much as I don't like it, I will survive. Who knows, maybe tomorrow will suck just a little less than today.

Day 100

The poet Dean Young wrote: You start with a darkness to move through but sometimes the darkness moves through you. Occasionally, I feel this anger well up in me, in response to the Bill's cancer. Sometimes it is directed at Bill, sometimes it is directed at the blanket left in the living room after a nap, sometimes it is directed at the woman who sits behind the counter at the lab and chats with a friend while we sit waiting for yet another blood draw. It is almost never directed at the cancer. The cancer, after all, is deaf and indifferent. I suppose I am angry at my own powerlessness. I couldn't make my dad stop drinking, I couldn't heal the fractured mind of my first husband and I can't cure Bill's cancer. I am utterly powerless and it really pisses me off.

Day 99

Some days I can't even think of anything to have for dinner. How can I be expected to write?

Day 98

Up at 4:00 a.m., we had to be at the hospital by 5:45. With a 45 minute drive to get there, we didn't have much time to acclimate to the day. Just as well, Bill couldn't have coffee, or anything else to eat or drink. I surreptitiously sipped tea and ate a piece of banana bread while Bill sat staring into space. We were both nervous. The test today would reveal whether or not the cancer has spread to the lymph nodes. So much hangs in the balance. The ride from Moscow to the hospital in Lewiston was tense. I am not used to driving in the dark. It makes me feel old and sad to realize that I am already become one of those people. Once at the hospital, we are ushered into a room where Bill is instructed to undress and given a paper gown to change into. Somehow in taking off his clothes, I fear that he is being stripped of his identity. He looks so vulnerable laying there in the narrow bed. Soon they will wheel the bed to an operating room where they will anesthetize him and do God knows what. Bill and I are both lost in fearful daydreams when Brenda comes into the room. She is a tiny woman with a generous smile, a shock of black curls and sparkling eyes. Her badge says: RN. She asks a series of medical questions, the same questions Bill has answered dozens of times in the last few weeks. The repetition can be tiring but Brenda's tone is conversational. She immediately puts us at ease. As she completes the routine medical tests, she asks about our lives and tells us about her love of gardening. We talk about the approach of springtime and our shared aversion to new technologies. Bill tells her the story of how the cancer was discovered and she says: "Wow, you've had a difficult month, haven't you?" No apologies, no platitudes, just empathetic understanding, pure and simple. I have heard it said that our problems always come bearing gifts. Brenda must be one of those gifts.

Day 97

Growing up, my home had all the hallmarks of instability: too young parents, poverty, alcoholism, depression. I longed for some bedrock upon which to build my life. More than anything I wanted to bring order to the chaos. Even as a child, I was neat and organized and diligent and hard working, at times obsessively so. By the time I was in my twenties, I had come to realize that while I could control my actions, I couldn't control the outcomes and I certainly couldn't control other people. I felt small and insignificant: helpless. I sought support from groups that met in church basements. Adult children, we called ourselves. Never was a name more apt. Around the same time, I started reading about the occult. My friend Donna and I would visit psychics when we could afford it. When we were broke, which was most of the time, we would bring out our own tarot cards and attempt to read the obscure messages of the Hanged Man or the High Priestess. We smiled at the future when the Lovers appeared and cringed in response to Death. We wanted so much to believe that the future was already written, that we could divine it and prepare ourselves. Somewhere along the way I stopped believing in prophecy or magic, but I never stopped longing for certainty and stability. One thing is certain about living with cancer: nothing is certain. The doctor says: Your cancer hasn't spread with a tone and inflection that suggests: well, probably not. A course of treatment is laid out only to be changed later. Office workers and nurses convey information that is changed at the will of doctors. Dates, locations, instructions, plans and protocol are all tentative. One has to learn to be comfortable with uncertainty. Ah great, another fucking growth opportunity.

Day 96

I woke up this morning and prayed for sleep to reclaim me. When it refused I reluctantly rolled out of bed. I didn't want to face the day. More to the point, I didn't want to face my feelings: the feelings of frustration and fear that starting welling up in me at the surgeon's office yesterday. I didn't want to hear his concerns about the prospects that perhaps the cancer had spread to the lymph nodes or invaded the chest cavity. These aren't just spare parts were talking about here. This cancer has claimed part of a person I love. I want to believe in the magic of medicine to make it all better but it is clear that the cancer is a mighty and mysterious adversary. I am afraid. Yesterday, I proclaimed my commitment to managing gracefully. I suspect that in order to live gracefully I can't allow my feelings to be in the driver's seat, nor can I lock them away in the trunk. I have to allow them to pass through. I have to feel them and recognize that they are nothing more than mind clouds.

Day 95

The work that writers do is crucial to the healing of world. They give us words to describe our desires, our joys and our heartaches. The words can move us toward understanding, the first step in healing. At least that's the way it is for me. I am a true believer in what Gloria Steinem calls bibiotherapy. A few days ago, Sylvia Boorstein, gave me the words managing gracefully. She named my deepest desire at this point in my life, particularly as I face with Bill the challenge of cancer. More than anything I want to manage gracefully. I know that it is what he wants for me, as well as himself. It is a gift I can give him and myself. It was always the fear that blocked my path to grace in the past. Loss triggered fear and I responded by trying to defend myself: I would lash out at anyone or anything I perceived as a threat, not very gracefully, I might add. Now I know that in order to manage gracefully, I must attend to the pain: the fear, the sadness, the loss and the regret. I have to sit with it and listen to it as I would a friend. That intention is what is most alive for me today.

Day 94

I picked up Mary Karr's new memoir, Lit, this morning. The preface is written to her son. She talks about the pain she created in his life and how she hopes that the story she is about to tell will help him fill in the blanks. She is, in essence, offering the gift of her truth. Yet she starts by saying that it is all a lie in recognition that there is no Truth. I put down the book and got in the shower, a place where I do some of my best thinking. I started to imagine rewriting the preface to the memoir I started a few months ago. I haven't touched it in a month, or more. But suddenly I felt inspired. The words were as accessible as the water that rained down from the tap. I made two mental notes. One, read more Mary Karr. Two, invent a way to write in the shower.

Day 93

I was savoring the last few pages of Kim Barnes's Hungry for the World when I ran across a passage that answers the question: Why do I write? She says: I think of the Inuit way: a wolf bone whittled to a point at both ends, coiled and frozen in blubber, left along the path of bears. The bear eats it and weakens slowly, over miles, over days, the bone twisting and slashing, killing from the inside out. Shame feels this way, swallowed and sharp, working its way deeper with each move to dislodge the pain, so that finally, we lie still, dying with blood in our mouths. We eat our stories and starve. I write to save myself. I write because I must.

Day 92

I used to work for the National Council on Alcoholism. I had a co-worker and friend named Pat who was "in recovery." It was the 1980s when those words had a particular meaning. Pat was older and wiser than me, often repeating colloquialisms common in the church basement circles she frequented. In response to my never ending quest for truth, Pat would sometimes say: "The truth is simple." I never asked what she meant because it seemed to go against the principle of the thing she was saying. But I tucked her wisdom away and sometimes when the words swirled in my head and my tendency toward analysis left me feeling like I was spinning in circles it would come back to me: the truth is simple. Later, as a graduate student, my teachers tried to convince me that the truth is quite complicated. They used words to obscure the truth: words that only an elite few have access to. I would read Habermas and Foucault convinced that there was a pearl of wisdom deep beneath the surface of the words. Why did they insist on hiding it under the silt and sand? The writers I admire most today are those who use words sparsely. I love finding a simple truth on the page: naked and real, accessible and unadorned. This morning I was reading a book by Sylvia Boorstein appropriately titled It's Easier Than You Think. On page 4, she defines mindfulness as: "the aware, balanced acceptance of present experience." This practice, she says, allows one to "manage gracefully." It doesn't get much more simple than that.

Day 91

With his Indian accent, the little brown man in the Brooks Brothers suit said, "The cancer has not spread." I could feel the key slip into the lock at that very moment. I could hear the clink of metal on metal as it turned, the creak of the heavy steal door swinging open. I was free from the prison I have been in for the last few weeks. It was a prison of my own making, of course, but I needed those words to free me. Trapped by fear, I didn't know how to escape on my own. I would have figured it out eventually, but I needed time. And that was my greatest fear of all, that there would not be enough time. I am not so naive as to believe that the doctor's pronouncement means that the road ahead will be easy. Cancer, even in its infancy, is often cruel, particularly when it has someone you love in its grips. But it's not really cancer or even death that I fear. My greatest fear is that I/we will never reach that state of grace that comes from acceptance. The doctor says we have time. I know that this is an invitation to begin the journey.