Friday, October 31, 2008

What If the Opposite is True?

I had a powerful experience yesterday. I was—as I so often do—mentally rehearsing a situation in which I believed that I was going to have a big conflict with John. I was imagining a scene in which I would be left out, disrespected and not important. Given that I was gathering emotional ammunition and preparing both my attack and my defense”: “He should…” “It’s clear that…” “If you loved me…” etc. And in my mind I was going over this again and again working myself into a state of fear and frenzy.

And then—seemingly out of nowhere—I pictured the very scene happening as I thought he wanted and I saw that it was perfect; not only was he right but that if he did it the way he wanted it would meet my needs more clearly. It would make loving each other easier.

The contrast was so sharp and so startling that it really stopped me cold. There I was, ready to make a scene and let him have it-- and being the nice guy that he is he’d probably do it my way just to please me. And if I had my way I would be the loser.

The realization was so stunning and my error so dramatically off that I began to think: What if I have it backwards? What if other things that I object to or fear are like this too? What if the exact opposite is true?

Thursday, October 30, 2008

Conversations at Chemo

It’s a funny thing. We end up having these important conversations while he is receiving chemotherapy. It’s a public setting and stressed in its own way. Surrounded by people who are sick or dying or getting well. Caregivers sit at the feet of their loved ones. There are several TV’s on and lots of chatting and joking and movement as nurses check machines and add bags of chemicals and insert IV lines and jam needles into patient’s chests. In the middle of that, almost accidentally, we fall into these profound conversations about our lives, our relationship and our love. Maybe, surrounded by all that living and dying it’s not surprising after all.

Wednesday, October 29, 2008

Being Real

Today I decided to take the risk of being real. This morning after we made love a huge wave of sadness hit me. Just a tsunami of grief, regret, sadness that would not lift. I did Pilates, drank coffee, said prayers, did my hair and make-up. But it would not shift. Was it the sex? Feeling close and then the rush to leave the house? That echo of other days when lovemaking was followed by hurried good-byes? Was it the weather? Cold and rainy and the first prediction of snow? A sadness and missing my other life when a snow day was fun and meant laughter and play? Was it cancer and caregiving--Always at the ready to break my heart? All I knew was that it was heavy on me and would not shift.

Now on top of that was all the internal “good girl” and “good girl friend” voices telling me that I need to be happy and bright and upbeat. The inner voices, Thanks Mom--that says “don’t be a drag” and “he doesn’t want to hear from you when you feel sad.”

But then I thought, “So is this a real relationship or not?” If we are a couple then he gets to see the good and the bad, the happy and the sad, the easy and the hard.

So I decided to be real and I called him and left a message saying how I really felt. I decided not hide who—and how—I am.

Tuesday, October 28, 2008

Writing Obituaries

I was telling my friend Leslie last night of my fear that his obituary will name only his wife and trying to anticipate what that might feel like someday. But then we decided that we needed to write our own obituaries. So we agreed that we need to be able to complete this:

She is survived by WHOM? And she was most proud of her work on WHAT? Her friends will remember her for her love of WHAT? But she most enjoyed WHAT? In our community she was appreciated for WHAT? All of her life she was deeply committed to WHAT?

Monday, October 27, 2008

Feeling Trapped

A miserable Saturday night. I worked so hard all week and then chores all day. I wanted couple time or fun or sex or something to delight and distract. But he is in a chemo coma: asleep or in a fog. I feel trapped, lonely, frustrated and resentful. I am going through all this just to be left alone at the end? And the obituary will say, “Survived by his wife of thirty years”.

What the fuck?

Sunday, October 26, 2008

The Big Eraser

It’s chemo weekend and his fatigue is kicking in. When they talk about fatigue as a side effect of chemotherapy they don’t really explain what it’s like. If you haven’t had chemo or haven’t seen someone on chemo you might think this means they get really tired. It’s so much more than that. It is as if a big eraser comes and starts to rub the person away. They get sleepy, yes and dull, yes. But they also fade and their edges get blurred. It’s not like this is a tired person but more like the person is gradually disappearing. It’s lonely and a little scary. There is a body here but not really a person.

Saturday, October 25, 2008

Touche Eclat

A beauty tip for caregivers: You will look tired. Your eyes will age. It’s the crying, lack of sleep and psychic distress. You’ll want to look better and may make the mistake of thinking a bright lipstick will help. No. No matter what your mother used to say she was wrong on this matter. A bright or dark lipstick will only make you look old and yes, make your eyes look more tired.

Here is the solution: Touche Éclat, a concealer and highlighter by Yves St. Laurent. The absolute best. You can layer it on all day and never a build up. It’s not cheap. But neither is chemo. This is your co-pay.

Friday, October 24, 2008

Thy Will Be Done

In my class last night a woman told a story about when her first baby died and her mother—after seeing her suffer—came to her and gently said, “You have been saying the Lord’s prayer for many years. The part about “thy will be done” is for real. It includes even this.”

I sat there and heard that and thought, “Oh, shit.”

Do I mean it? About my life? My relationship with John? His cancer? All of it?

Wednesday, October 22, 2008

Virginia Woolf

I’m preparing to teach a class on the Literature of Caregiving and I find this sentence from Virginia Woolf in “On Being Ill”. Francine Prose calls this “one of the most complex and virtuosic sentences in all of literature”:

"Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise in temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rinse the mouth-rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us—when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.

I counted them for you; that sentence has 181 words.

Reading and Writing

Being a writer will make you a better reader. Not because of some cognitive or intellectual process but simply because if you are supposed to be writing, and you are afraid to begin, the very best procrastination is reading. So if you promise yourself that you’ll do a lot of writing that’s a sure fire way to get a lot of reading done.

I Feel Bad

A woman at work asks about John. “How are things?” she says. She does not actually say his name. I tell her “it’s all relative. He is back to work, but…”

“He is so positive”, I say, “and he doesn’t talk about the pain.” I worry that others will not know that he is in pain. “And why do you care about what they think?” she asks. And I tell her that I am afraid that people won’t know that he is in pain and they may expect too much from him.

“Maybe” she says carefully, “Maybe you want people to know that you are in pain.”

She has nailed me.

I am in pain and there is no way to admit that. It feels like there is no acceptable way for that to exist. He has cancer and chemo and pain and neuropathy and fatigue.

What do I have?

Worry, grief, anger, and fear.

Tuesday, October 21, 2008

When I am Sick

This morning on my way to the YMCA I got very sick, very fast. It was on and off so suddenly that it was probably something I ate but for the hour that I was ill my head raced to all kinds of places. Can I be sick too? Can I be sick when he has cancer? Who will take care of me if this is real illness? For an hour I went thru every scenario. All about scarcity: Is there room for me and am I allowed to be unwell? The vulnerability I feel in general became very specific.

Monday, October 20, 2008

The Elegance of the Hedgehog

I did a lot of reading last week at the beach. One of the best books was a new novel called, “The Elegance of the Hedgehog” by Muriel Barbery. There were so many pages I underlined and starred in the margins. Here is one bit that felt true to love in the time of cancer:

“When illness enters a home, not only does it take hold of a body; it also weaves a dark web between hearts, a web where hope is trapped.”

Isn’t that an incredible sentence?

Sunday, October 19, 2008

What Stands Behind Me

I’m getting ready to leave the Cape and head home. Looking forward to seeing John and to being warm—it was cold here last night and a propane heater doesn’t quite cut it below 50 degrees. I went to the 6:30 am AA meeting today and gave hugs and got phone numbers. I see the gift of the AA community anywhere in the world. I am part of a community and there is this legacy of recovery behind me and millions of people who are willing to help another recovering person. I felt it today.

I have a community here to return to no matter what happens to John or between me and John. I’m touched by so many of these people that I have known only on vacation. Amy laughing about seeing Madonna in Boston last week. James, a chef, sober one week, and I got to hear him every morning of his first week and hear about using yogurt to marinate lamb (the enzymes in yogurt break down the tough fibers and make the lamb extra tender). Doug and Jay who share 22 years with me.

I lost so many people in my life and I especially miss my brothers. But look what I have even here at the Cape: James and Jay and Doug. Sober brothers and a huge recovery family standing behind me. All I need to do is ask.

Saturday, October 18, 2008

Language Lesson

I learn a lot from John but today I got a really important lesson: Language creates reality. I can create my reality by how I speak about my life and my experiences. Last night he was telling me about the very painful mouth sores he has now and I said, “That’s awful.” and he said, “No, it’s not awful, it’s annoying.”

Now I had heard him before describing the side effects from chemo as annoying and as inconvenient but I just took that to be his stoicism, maleness, macho-guy stuff. This morning I replayed his words in my head and I got it. If something is awful or terrible then you are trapped. But if it is annoying, well, that’s all it is. You feel it, you deal with it but you go on. It’s affecting you but it doesn’t have you. It can’t rule you and you are not a victim.

All of a sudden I could see that the words I choose are making my life actually BE one way or another. His cancer may be a tragedy, an awful thing, or simply something that is happening in our lives. How many times do we say “the power of language”? I want to play with this, watch my words, and see if I can create a new reality for my experience now.

Friday, October 17, 2008

Being Happy

I am happy today. I have been happy for several days. I am at the beach alone and happy. I think of John. I talk to him at night and hear about his day. The side effects are getting worse. The chemo this time is the hardest he tells me. His mouth hurts. The sores are bad now, open and bleeding. I take this in. I care. I worry. But I refuse to stop being happy. I see my mind trying to catch me, sneaking up on me with, “What if he has to go to the hospital this week?” and “What if he gets really sick at work?” It gets me for a few minutes. I take the bait and follow the fear. But then I remember; I am happy and I am allowed to be.

Waiting for Crumbs

I take my donut and my coffee to the beach each morning. I sit on a log and eat and pray and listen to the ocean. I’m alone on the beach and that is one of the miracles. One of the most popular beaches in the world and I am alone. Yes, there is a God.

When I’m sitting on the beach eating my donut the seagulls arrive. They stand a few yards away and look around occasionally glancing at me. They try to look nonchalant but they are waiting for the crumbs. Sometimes I’ll toss them a bit of my donut but usually they have to wait until I am done and then they come for the crumbs that have fallen on the sand.

I do not want to be like one of these gulls. I do not want to stand just off to the side waiting, acting like I am casual and unaffected, but hoping for crumbs.

Thursday, October 16, 2008

A Day at the Beach

I am at the beach and having my week alone. The cottage I rented is perfect. It’s like a doll house. A one person house with living room, office area, small dining area and a kitchen. There is one small bedroom with space for one double bed, a night table with clock and lamp, and a small built-in counter that serves as a vanity. There are lamps everywhere. This is a house for reading. The woman who owns the house is a photographer and it makes sense. It’s a teeny tiny house with perfect lighting. Anywhere you sit you can also read.

I have come here to write and I have come here to remember me. I need to remember me before him. I need to feel my edges again. I need to recall what I like to read, eat and watch on TV. That is one of the surprises. Watching the tiny television—everything is doll sized, my sized—I watch Gossip Girls and Desperate Housewives. I do not watch baseball. In the car I listen to WGBH—Boston’s NPR station. I like the news, I like the political analysis. This is better NPR than we have at home. I brought music and I brought spiritual talks on CD but I love listening to WGBH. I do not listen to music.

I do not wear makeup here. I take a shower at midday after I have been writing and after I have been to the beach. My hair is fine without a blow-dryer. I look at my face without makeup. This is my face. This is me.

I am at home here. Inside this cottage and inside of me. I do not want to give this up.

New Shoes

I bought two pairs of shoes on vacation. The first are Cole Haan moccasins. A perfect saddle tan color that will burnish with wear and earn a lovely warm patina. My 15 year-old Coach moccasins were worn and torn beyond repair. I loved them from the day I bought them and every day for 15 years. The cost-per-wear on those old Coach mocs was excellent. They may have even begun to pay for these new shoes.

The second pair required more deliberation. I saw them on Tuesday and tried them, walked around the store, put them back, tried again. Then I left the store and came back Wednesday and tried them on again. These are boots, also a saddle-tan color and western looking with out really being a cowboy boot. They are above the ankle and have a 2 and a half inch stacked wooden heel. I felt tall and strong in these boots. Not Nancy Sinatra, no whip and no stiletto, but these boots are made for walking. Something in these boots I need right now. They make me taller but I can stride in them.

Why shoes? Does any woman have to ask?

Two Stories

It is said that there are only two stories: A man goes on a journey and A stranger comes to town. When I talk to people who want to write about their caregiving experiences I ask them, “Which one is your story?” There is no right answer, of course. Cancer is a journey that men and women can go on-patient or caregiver. And certainly Cancer is a stranger that comes to town.

Thinking about John and I today and the way that we see this story, how we construct this narrative. Then I think about the way this story affects those around us. There are many stories in this story. Many journeys and many strangers.

In my story John is a stranger who came into my life five years ago. I never expected then what would happen. I was a stranger in his life too. He called one day to ask me to be a guest teacher at his school. We had never met. Then another stranger came to town: romance, infatuation, seduction, sexual desire. The erotic stranger and the romantic journey. We went on that journey. Then another stranger, cancer came into our lives. First it came into his body, then into our lives. After that many strangers arrived in fast succession: gastroenterologist, surgeon, oncologist. I could even tell you how fear arrived as a stranger in this story but for me fear is not a stranger, rather a familiar through troublesome companion.

In John’s life I was a stranger. He knew my work but not me. We met for coffee as two strangers and five years later we have a joint checking account, friends in common and a really nice coffee maker. We have been on one big, messy journey with many small side trips. John certainly is on a journey with colon cancer. Life, death, sickness and health are all rising like monuments around us. He is on an emotional journey too; ending a long marriage that included wonderful things: two great sons, a good wife, sweet memories, love and a vision they al had together for a future that is irreconcilably changed.

John’s wife certainly had the experience of a stranger coming to town: this other woman showed up and--in certain ways of constructing a story “took” her husband away. (That I could take a man from a life that he wanted does make him unenviably weak and pliable. But still it must feel that way.) Even worse must be the realization that the man she loved and knew became a stranger. And the journey, yes. It is a journey to remake your life when a relationship ends. Some people go to the end of the porch and stand with arms crossed and say, “I won’t go.” Others say “OK, I’ll go if I have to.” Others still may be able to say “Bring it, baby.” I have been on that porch and I have had to go on journeys I didn’t choose. I know all of those responses.

My husband too. I became a stranger to him, and John is a stranger who came into our “town” with terrible consequences. In his grief my husband has gone on a journey with fierceness and a strong sense of honor. Will we become strangers to each other? Or will we now go on a journey together crafting some kind of post-married relationship?

Survival Rates

Today’s newspaper reports on cancer survival rates. Colon cancer has a 59% five-year survival rate for men. I take that in. Right away I see my thinking: is the glass half full or half empty? 59% can mean he’s likely to survive, better than 50% or I could say that 59% is pretty poor and that people with most other cancers have better odds of surviving their disease.

I have moved back and forth on this question of prognosis for months now. Three years? Five years? Two years? What does this mean for John? What does this mean for me? Should I keep believing that we’ll have time together? Should I accept that this relationship is time limited? And if I accept that this is time-limited, then what does that mean in terms of how I spend my time, money and emotional energy?

The bad news is obvious. I may lose him, may be losing him right now. We may not have time to make a married life. But the good news is also present in the limits of our time and that is all about being in the present. I say to myself: “Stop thinking about the future. Stop thinking about later and married. Be here now. Be in this relationship –as it is—now”. Can I do that?

Sunday, October 12, 2008

It's Vacation Time

I'm heading to Cape Cod for a week alone. Writing, beach walks and beach surrender. When I look at the ocean I always know that there is something bigger than me. I’ll also have a daily AA meeting. There is an AA meeting everyday in Eastham, Mass. that starts at 6:30 AM. The beauty of these early meetings is that the meeting begins before my ego is awake. Friends are cooking for John this week. I'm trusting God, myself and John that taking care of me really does matter. I also know that if I don't go away now I never will; it's got to be part of this relationship that I have a life alone and that I take vacations and go on retreats. I’ll be back in a week. More to come.

Thursday, October 9, 2008

Whose Drama is It?

His brother says “I guess her view of things is more dramatic.” “Things" meaning cancer, chemo and caregiving. Maybe it was an innocent comment but I got dramatic when I heard that he said that. Part of the problem in this caregiving dance is the discrepancy between John’s presentation of his situation: “I’m fine; neuropathy is annoying, but I’m really quite ok.” Versus my view of this situation: He’s sick, tired, in pain and not able to do many things he did before which does make this hard for me.

Now here is the caregiver dilemma: Is he supposed to whine more so that I don’t look dramatic? Am I supposed to not admit that this is a hard experience because that may imply that he’s giving an edited account? I feel caught in the gap between what he’s telling and what I am experiencing. His brother—rightly perhaps, hears from John that he’s “fine just fine” wonders at my profession of difficulty and requests for help.

OK, for the record this makes me really sorry that I asked for help. Yes I am pouting now but this was my worst fear: that someone would think I was incompetent or unwilling to be the caregiver and this brother is suing the word “dramatic.” Ugh.

What it comes down to is that John has cancer and is going thru chemo and that is his real experience and he gets to tell whomever or no one about what that’s really like. He’s using a careful blend of denial and macho persona. I am not having chemo but I am having caregiving and it is exhausting. So do I accept his view of the world and invalidate mine? What are the politics of caregiver and sick person? Whose reality is it? And for what audience? If there’s a drama here then there has to be an audience.

Monday, October 6, 2008


This morning I went for my annual mammogram. It’s never been an issue. No history of breast cancer in my family and no “breast problems” as they delicately ask at “The Breast Center”. (How come no “Colon Center” with special snacks and pretty changing rooms?) My only breast problem over the years has been finding the right bra—too small for most really sexy push-ups but just a tad too much for going braless.

But since last night when I put the reminder and the mammo script on my calendar for the morning, I began to imagine, What if they say, “Please wait for the doctor”? What if they say, “You need to come back?” Over coffee and in the car I tortured myself with trying to imagine what I would do. Would I tell anyone? Talk to my therapist first? If I had cancer what would that mean to John? To lose the breasts he is so crazy about? Would I do chemo? How in the world could we both have cancer at the same time? Who would take care of me? What would become of us?

Before John's colon cancer diagnosis a mamogram was just a chore, something to put off or take care of. Before the day of his colonoscopy I was aware of illness and death--my family has died--but I never had to hear, "You have cancer." Now I know how ordinary those days can be and how your life --and the lives of those who love you --can change in a few words.

It didn’t help that in the waiting room of The Breast Center there were men waiting. They were accompanying their partners who did have “breast problems”. The long wait, surrounded by pink everything (Yes, fear that I will be punished for my arrogance was a possibility too), didn’t help. Finally into the room and push and pull and smoosh and tear—small breasts just don’t fit the machine-- my neck stretching to get enough chest tissue onto the plate. “Hold your breath” the technician says—as if I had even been able to take a full breath since leaving the house.

Sunday, October 5, 2008

New York City

Yesterday was a New York City day. A late birthday gift from John. Tickets to see EQUUS. The actor playing Alan Strang is Daniel Radcliff of Harry Potter fame. All grown up now. From Quidditch star to sexual psychopathy.

It's a powerful play in the ways that it questions sanity and questions what is real passion. When the psychiatrist speaks to his friend about how he lives a brisk, tame life pretending to be interested in the primitive but this boy he is supposed to "cure" acts out something deeply primitive and lives real passion--but at a cost that is self-destructive, I wept.

We were both so moved by the play and it's call to passion and the parallell in our lives that we sat until the theater was empty.

We also went to the Morgan Library to see the Babar exhibit. One of the touching parts of the story was the realization that Babar was drawn by father and then son. Babar was such a caring father to Pom and Alexander. I wonder at the hurts each time John looks at fatherhood through these slant lenses and wonders at his sons and how they pulled away when he has cancer.

Friday, October 3, 2008

Purgative, Illuminative, Unitive

In my class on spiritual direction we are talking about the stages of spiritual development: The Purgative Stage, The Illuminative Stage and the Unitive Stage. These come from the writings of St. John of the Cross. The purgative is excited, animated, interested. This is the honeymoon. Then God calls us from that and the call feels like annoyance, boredom, resentment. The honeymoon is over. The new path becomes ordinary. This is the Illuminative way. The exciting, amazing God becomes real, comfortable and flawed. Then if we can persevere through this we enter the Unitive Stage. We are aware of our part on greater humanity. Others hurt and suffer. Faith transcends intellect. We may leave the church but we join the world.

Caregiving too has these stages. At the start we are scared but also excited. So much to do and so much to learn. Facts, science, vocabulary. Another world is revealed. We are initiated. Then reality sets in and ordinary time. We are tired, bored, resentful. But this too may be the call to ordinary fidelity to caregiving. The slog. Ken Wilbur writes about this as “Chronic isn’t interesting”. If we survive this we begin to enter compassion with the world. Everyone has something. There is death and grief all around. But rather than be depressed we see the joy that exists in being part of humanity. Death is near by and we choose to live.

Thursday, October 2, 2008

Playing with Clothes

One of the tips that caregivers receive is to do one thing each day that is just for fun. Stay connected to the things that give you joy. They often mention massages, and pedicures and always, always bubble baths. I tried all of those but a manicure isn’t fun. It's just maintenance. And a bubble bath is too much like those dam smoothies. It has the ring of platitude to it.

What is fun for me is playing with clothes. I love fabric, fashion, design and color. Maybe a leftover from Barbie and paper dolls? Or maybe I loved Barbie and paper dolls because this love of line and design was already there when I was very young. Recently I have been making clothes from clothes. This weekend I made an empire style top by inserting a beautiful scarf thru two small slits in the sides of an old gray tee and then pulling the scarf to the front in a knot. A nice combination of grey knit and Hermes silk. Sexy. And it looks great with jeans.

Wednesday, October 1, 2008

Money Matters

We are making a budget and paying bills. We are tracking expenses and balancing the checkbook. We talk about what we need and how the money comes in and goes out. It is the most mundane thing and the biggest deal. We look at the expenses and obligations we incurred in our other lives and we talk about how our past lives and marriages impact us financially and how that affects us as we move forward. It is another kind of intimacy and I feel its power.