The loss of identity through cancer, brain injury, travel, art, food, sex, wilderness and family, and our journey to discover what lies beyond who we think we are. 

In this interview, Laurie asks me questions about my writing process, and we talk about vulnerability and its connection to making sentences. She asks me to read one of my favorite pieces, about the first time I bathed Richard after his surgery for a rare cancer.

Posted at 10:35am and tagged with: Cancer, memory, tbi, memoir, writing,.

New Essay Collection!

This month I sent out my little book of essays, Creation Story. It was so natural to say yes to the making of this book. It began when a poet asked me to come to Orcas Island to read for their salon series.

“You realize I haven’t published my memoir yet?” I said.

“I’m so moved by your piece in Brevity. I want you to come here to share with our community. Read anything you want.”

I’d read my work publicly before, but never any of the words about my husband’s loss of his memories. When Richard and I spoke our freshly written passages to each other in our sunlit kitchen, we would hold hands and cry. At first, I was hesitant to share such emotional experiences with strangers, yet I found myself agreeing to travel. Weeks passed. One day, I realized I could make a book to take to the event. I brainstormed, played, asked a lot of questions, and within ten days a new book arrived at our doorstep.

The essays selected for this book have been published in Brevity, The Southern Review, Cold Mountain Review, Side B. They were some of my favorite pieces I’d written, mostly because I’d put my heart in writing. I’d said some things I’d never publicly proclaimed. I’d told some family stories that were beautiful and wrenching and, once upon a time, secret. Now I was trying to be transparent, to see if I could stop dreading rejection and judgment. While I keep what is private, or what I consider to be sovereign, my memoir writing demonstrates (to me, mostly) that I don’t have anything to fear. I have no reputation to uphold. As my husband so gracefully shows me, I’m in a relationship with the present, where what matters is authenticity, not social status. This truth arrived on the page first through writing about our family’s changes in the wake of the TBI. Without the friendship and counsel of Warren Etheredge, Judith Laxer, Pamela Grace, Laurie Wagner, Trey Gunn, Waverly Fitzgerald, Carole Harmon, Sheila Belanger, Priscilla Long and Benjamin Smythe, and everyone who challenged me to radical honesty and deliberate transparency, I wouldn’t have had the courage to send our story out there. Thank you.

Ever since the day Creation Story began to be shared, we’ve been in wonder at the responses from friends, family and strangers. Some people from Richard’s past hadn’t known what happened to him, and there was the book announcement, declaring on facebook and twitter and linkedin that he’d had a brain injury that took the memories of his life. When I shared his story with a group of soldiers from Fort Lewis, nearly all of them could relate to the bewildering changes of personality and identity that Richard experienced. A former colleague of Richard’s reconnected to say, “He was always happy, smiling and proudly talked about your family. He simply loves life. With your family’s tremendous love, support and with Richard’s determination, I’m not at all surprised that he has been able to recover, remember, relearn and return to life.”

Another friend wrote, “I’m haunted in the most delicious ways, imagining what it might be to completely forget. I try to hold my entire history/story as if it was happening now, to keep alive in my mind how wonderful or terrible it was. I’m in the process of dissipating it all, like a pile of debris, imagining how it would be to have every minute, every taste, every touch, every interaction to be new, unheard of, unfelt.”

Our big story, the memoir we spent much of the year writing, is finding its way to the allies who will help it find its audience. In the meantime, we’re sending Creation Story out to people.

If you’d like to help get the book into the hands of those you think might benefit, please write us and ask for a free copy. If you want to take it to cancer survivors, people in recovery from TBI, hospitals, coffee shops, book clubs, or give it to your best friends, we want to send you Creation Story. Just ask whomever you give a copy to keep it moving.

And if you’d like to buy a book yourself you can find Creation Story here.

Posted at 12:56pm and tagged with: tbi, book, cancer,.

New Essay Collection!     

This month I sent out my little book of essays, Creation Story. It was so natural to say yes to the making of this book. It began when a poet asked me to come to Orcas Island to read for their salon series.

     “You realize I haven’t published my memoir yet?” I said.

     “I’m so moved by your piece in Brevity. I want you to come here to share with our community. Read anything you want.”

     I’d read my work publicly before, but never any of the words about my husband’s loss of his memories. When Richard and I spoke our freshly written passages to each other in our sunlit kitchen, we would hold hands and cry. At first, I was hesitant to share such emotional experiences with strangers, yet I found myself agreeing to travel. Weeks passed. One day, I realized I could make a book to take to the event. I brainstormed, played, asked a lot of questions, and within ten days a new book arrived at our doorstep.

     The essays selected for this book have been published in Brevity, The Southern Review, Cold Mountain Review, Side B. They were some of my favorite pieces I’d written, mostly because I’d put my heart in writing. I’d said some things I’d never publicly proclaimed. I’d told some family stories that were beautiful and wrenching and, once upon a time, secret. Now I was trying to be transparent, to see if I could stop dreading rejection and judgment. While I keep what is private, or what I consider to be sovereign, my memoir writing demonstrates (to me, mostly) that I don’t have anything to fear. I have no reputation to uphold. As my husband so gracefully shows me, I’m in a relationship with the present, where what matters is authenticity, not social status. This truth arrived on the page first through writing about our family’s changes in the wake of the TBI.  Without the friendship and counsel of Warren Etheredge, Judith Laxer, Pamela Grace, Laurie Wagner, Trey Gunn, Waverly Fitzgerald, Carole Harmon, Sheila Belanger, Priscilla Long and Benjamin Smythe, and everyone who challenged me to radical honesty and deliberate transparency, I wouldn’t have had the courage to send our story out there. Thank you.

     Ever since the day Creation Story began to be shared, we’ve been in wonder at the responses from friends, family and strangers. Some people from Richard’s past hadn’t known what happened to him, and there was the book announcement, declaring on facebook and twitter and linkedin that he’d had a brain injury that took the memories of his life. When I shared his story with a group of soldiers from Fort Lewis, nearly all of them could relate to the bewildering changes of personality and identity that Richard experienced. A former colleague of Richard’s reconnected to say, “He was always happy, smiling and proudly talked about your family. He simply loves life. With your family’s tremendous love, support and with Richard’s determination, I’m not at all surprised that he has been able to recover, remember, relearn and return to life.”

     Another friend wrote, “I’m haunted in the most delicious ways, imagining what it might be to completely forget. I try to hold my entire history/story as if it was happening now, to keep alive in my mind how wonderful or terrible it was. I’m in the process of dissipating it all, like a pile of debris, imagining how it would be to have every minute, every taste, every touch, every interaction to be new, unheard of, unfelt.” 

     Our big story, the memoir we spent much of the year writing, is finding its way to the allies who will help it find its audience. In the meantime, we’re sending Creation Story out to people. 

     If you’d like to help get the book into the hands of those you think might benefit, please write us and ask for a free copy. If you want to take it to cancer survivors, people in recovery from TBI, hospitals, coffee shops, book clubs, or give it to your best friends, we want to send you Creation Story.  Just ask whomever you give a copy to keep it moving.

     And if you’d like to buy a book yourself you can find Creation Story here.

You Can Die Trying

1.
I woke up sobbing this month. From a dream. Not little tears. Not whimpers. Great gasps and wails.

In the dream I am in an ancient ritual, and then everything goes quiet. I close my eyes and I hear the forest — birds, insects, trees, wind. My body is replete with the wilderness. The scene shifts with a force. The forest is dying. The wild is becoming a wasteland. I keen myself awake.

I have screamed, grunted, snored, shouted, swore and spit in a dream. I have never before cried there.

2.
I rarely cry. I stopped crying when my husband incurred an anoxic insult that altered his brain. He cries over all kinds of things now, usually with joy, often over stories of other people. When we were writing a memoir about our experience after the trauma, he cried every time he read his pieces aloud. He is a physical therapist, and he cries at the end of the day when he tells me stories about the people he helps to walk and run and play again after their debilitating injuries. He cries when one of his children does something wonderful. The more tender he becomes, the less I want to cry. Instead, I toughen up. I write sitting in my kitchen, staring at an old cedar that sways and sheds in the winter storms. I feel like her, gnarled but not broken.

This stoic strength makes my wailing dream even stranger. Why am I crying in my sleep when I mostly don’t during the day? Am I walling myself off from despair? Am I trying not to feel this decay of the wild things?

3.
A friend introduces me to some new people at a coffee tasting. The others, all men as it turns out, offer wise critique of the presentation, the grinds, the music, the flavor, the barista. I can tell you what one man’s lips look like when he suppresses a smile. I can say how each man held a gaze. I can show you how their legs looked under the table when they were relaxed, and how their hands moved when they were speaking. I can’t remember what we talked about, or even much about why I was there. I can tell you every emotion that swayed me, and how I imagined what they were feeling. This has been the way of it since I was a little girl. Often I can’t look at people while I am talking because I am sensing their gaze and gestures and body so intensely that I lose language.

I talk with one man about drinking coffee in Italy — the stand-up gelato shops, the art and conversation of the caffe. We stand smiling at each other, thinking of our private memories of travel. I like to think that if I was going to hang out for a few hours with this potential new friend, I might tell him that I cried in my dream. I imagine that I am just that forthcoming, that I can risk not caring what he thinks, that I can risk seeming insipid, or puerile, or pathetic. The truth is, I’ve spent a lifetime avoiding saying essential things. As a Southerner, a Catholic schoolgirl, a public relations professional, a fundraiser, I am practiced at knowing what to say to please people. Turns out, it takes a lot of effort to be phony.

In the last decade, I’ve been getting better at doing and saying what I want. I’ve started to write some things down I’ve never told anyone before. I don’t do this to fix things, or to be known, or to trade in secrets. I say things now because it feels like something is getting worked out through me. Some mystery. Perhaps some knowing will speak and I will memorize its gestures and turn that magic onto a page where it will be preserved.

4.
A few days before I have the crying dream, my uncle dies. When I tell my friend Wendy, she says, “Sorry about your Uncle Boonie. You’re lucky to have had one.” And I know what she means. There was only one possible. There he was, and then he was gone. He was my father’s brother, and he consoled me at my dad’s funeral by having a long conversation about life and how we know so little about what we will be given here. I don’t remember what he said exactly, but I do recall how he spoke downwards, into my right shoulder, his eyes barely rising to meet mine, so unshowily humble, that my daughter, who was trying to take a picture of us, had to wait a good ten minutes for him to raise his head. I’m sad that I was not able to go to his funeral, and that I didn’t take the time to record his stories, and that I haven’t spent much time with an entire generation of Kentucky farmers that is passing by. I’ve lost kin and friends, yet when Boonie dies something else drops away that I never expected.

I keep thinking I can preserve a life. And it isn’t possible.

5.
My husband’s brain injury took his memories and altered his personality. I am grateful to be with the same long legs and sweet smile and generous nature that I remember, even though the rest of him left. I wrote my way out of my grief for what was lost, wrote some essays and a book, and filled journals and letters with my disbelief and rage. I chronicled our lives in a similar way Boonie and the family harvested and stripped tobacco, with the daily industriousness of the work of the season, my back bent over the words, time chasing a recollection that turns out, like smoke, to be transient and unimportant. All along, the eventual miracle had been happening elsewhere, the miracle of finding yourself in love with a new person in the body of a lover you once knew.

6.
The forest is like that lover.

When I go out into the wilderness, I experience the same erotic pleasure as I do with a lover. There is no sensual difference between rolling around in the leaves and rolling with a human body. I have had orgiastic delight in trees and over rocks and against the wind and inside the sea and under the sun. For several years it has been my practice to go into the forest at least once a month, and to leave the city entirely for a month every summer. This is how I stay sane, I tell friends. The forest woos me, and I adore it in return.

And I have erred in thinking that the forest is mine. That because the forest is a beloved, that it will not be altered. This refusal occurs despite the apparent reality of climate change and wildfires and insect outbreaks and human plunder. Until the intrusion of despair into my waking state, I imagined the forest was always going to be there when I wanted it. I imagine that the wilderness is protected because so many people happily enjoy it.

The forest death of my dream isn’t like an uncle dying from being well-used, or a husband’s identity dying in a flash. It isn’t even like a natural cycle of wilderness decay. No, this is an unnatural winter. The trees have been breathing our human share of carbon dioxide, absorbing our use of cars and trucks. Trees, those carbon sponges, have been doing more than their share. We depend upon the forest for our very livelihood. Now the trees are in peril, many of the forests are releasing gas back into the environment, speeding up climate change. With growing economic problems around the globe, there are scarce resources to buy restitution of the North American forests wiped out by pine beetles, or the Amazonian forests destroyed by weather, or deforestation for agriculture in Brazil, or the explosive fires in the American Southwest, or the death of a Siberian forest the size of Pennsylvania.

‘So what can I do?,’ I might have said before the dream. Destruction is the way of things here. I can preserve nothing. Not one life.

And yet, I can keen myself awake. I can work for climate legislation. I can give part of my income to preservation efforts. I can measure our family’s fossil fuel use. I can make the necessary changes. I can ask my friends to join me. I can love the beauty and communion while witnessing the reality. I can stop pretending the earth will remain as I wish. In the unknowing of any being’s death, I can risk being with.

7.
Truth: You can’t save anything. Not really. We’re on a planet careening towards a red giant.* We will die, sooner or later; our bodies will change form; our memories will leave. Thinking that we’re some body with an inside self and an outside world might even slip away (exposing the peace – or whatever— that is at the heart of us.)

Dare: You can die trying.

I’ve been trying to preserve things since I was a child, imagining I could keep myself safe if I can understand the rules here. In some imaginary future, I might please people or piss them off. How would I ever get that ‘right’? They would only be praising or condemning their story about me anyway. The rules are false because they suggest I need something more than this. Or that what works for you to connect with your world will also work for me. In dropping the desire to protect myself, I open myself to tears, to others, to the wild that is not separate.

*Thanks to Benjamin Smythe for this and other insights.

Image: iStock, Pine beetles, as a result of climate change, destroy Rockies forests.

Posted at 8:54am and tagged with: death, climate change, non duality, TBI, coffee, dreams,.

You Can Die Trying

1.
I woke up sobbing this month. From a dream. Not little tears. Not whimpers. Great gasps and wails. 

In the dream I am in an ancient ritual, and then everything goes quiet. I close my eyes and I hear the forest — birds, insects, trees, wind.  My body is replete with the wilderness. The scene shifts with a force. The forest is dying.  The wild is becoming a wasteland. I keen myself awake.

I have screamed, grunted, snored, shouted, swore and spit in a dream. I have never before cried there.

2.
I rarely cry. I stopped crying when my husband incurred an anoxic insult that altered his brain. He cries over all kinds of things now, usually with joy, often over stories of other people. When we were writing a memoir about our experience after the trauma, he cried every time he read his pieces aloud. He is a physical therapist, and he cries at the end of the day when he tells me stories about the people he helps to walk and run and play again after their debilitating injuries. He cries when one of his children does something wonderful. The more tender he becomes, the less I want to cry. Instead, I toughen up. I write sitting in my kitchen, staring at an old cedar that sways and sheds in the winter storms.  I feel like her, gnarled but not broken. 

This stoic strength makes my wailing dream even stranger. Why am I crying in my sleep when I mostly don’t during the day? Am I walling myself off from despair? Am I trying not to feel this decay of the wild things? 

3.
A friend introduces me to some new people at a coffee tasting. The others, all men as it turns out, offer wise critique of the presentation, the grinds, the music, the flavor, the barista. I can tell you what one man’s lips look like when he suppresses a smile. I can say how each man held a gaze. I can show you how their legs looked under the table when they were relaxed, and how their hands moved when they were speaking. I can’t remember what we talked about, or even much about why I was there. I can tell you every emotion that swayed me, and how I imagined what they were feeling. This has been the way of it since I was a little girl. Often I can’t look at people while I am talking because I am sensing their gaze and gestures and body so intensely that I lose language. 

I talk with one man about drinking coffee in Italy — the stand-up gelato shops, the art and conversation of the caffe. We stand smiling at each other, thinking of our private memories of travel. I like to think that if I was going to hang out for a few hours with this potential new friend, I might tell him that I cried in my dream. I imagine that I am just that forthcoming, that I can risk not caring what he thinks, that I can risk seeming insipid, or puerile, or pathetic. The truth is, I’ve spent a lifetime avoiding saying essential things. As a Southerner, a Catholic schoolgirl, a public relations professional, a fundraiser, I am practiced at knowing what to say to please people.  Turns out, it takes a lot of effort to be phony.  

In the last decade, I’ve been getting better at doing and saying what I want. I’ve started to write some things down I’ve never told anyone before. I don’t do this to fix things, or to be known, or to trade in secrets.  I say things now because it feels like something is getting worked out through me. Some mystery. Perhaps some knowing will speak and I will memorize its gestures and turn that magic onto a page where it will be preserved.

4.
A few days before I have the crying dream, my uncle dies. When I tell my friend Wendy, she says, “Sorry about your Uncle Boonie. You’re lucky to have had one.” And I know what she means. There was only one possible. There he was, and then he was gone. He was my father’s brother, and he consoled me at my dad’s funeral by having a long conversation about life and how we know so little about what we will be given here. I don’t remember what he said exactly, but I do recall how he spoke downwards, into my right shoulder, his eyes barely rising to meet mine, so unshowily humble, that my daughter, who was trying to take a picture of us, had to wait a good ten minutes for him to raise his head. I’m sad that I was not able to go to his funeral, and that I didn’t take the time to record his stories, and that I haven’t spent much time with an entire generation of Kentucky farmers that is passing by. I’ve lost kin and friends, yet when Boonie dies something else drops away that I never expected. 

I keep thinking I can preserve a life. And it isn’t possible.

5.
My husband’s brain injury took his memories and altered his personality. I am grateful to be with the same long legs and sweet smile and generous nature that I remember, even though the rest of him left. I wrote my way out of my grief for what was lost, wrote some essays and a book, and filled journals and letters with my disbelief and rage. I chronicled our lives in a similar way Boonie and the family harvested and stripped tobacco, with the daily industriousness of the work of the season, my back bent over the words, time chasing a recollection that turns out, like smoke, to be transient and unimportant.  All along, the eventual miracle had been happening elsewhere, the miracle of finding yourself in love with a new person in the body of a lover you once knew. 

6.
The forest is like that lover.

When I go out into the wilderness, I experience the same erotic pleasure as I do with a lover. There is no sensual difference between rolling around in the leaves and rolling with a human body. I have had orgiastic delight in trees and over rocks and against the wind and inside the sea and under the sun. For several years it has been my practice to go into the forest at least once a month, and to leave the city entirely for a month every summer. This is how I stay sane, I tell friends. The forest woos me, and I adore it in return.

And I have erred in thinking that the forest is mine. That because the forest is a beloved, that it will not be altered. This refusal occurs despite the apparent reality of climate change and wildfires and insect outbreaks and human plunder. Until the intrusion of despair into my waking state, I imagined the forest was always going to be there when I wanted it. I imagine that the wilderness is protected because so many people happily enjoy it. 

The forest death of my dream isn’t like an uncle dying from being well-used, or a husband’s identity dying in a flash. It isn’t even like a natural cycle of wilderness decay. No, this is an unnatural winter. The trees have been breathing our human share of carbon dioxide, absorbing our use of cars and trucks. Trees, those carbon sponges, have been doing more than their share. We depend upon the forest for our very livelihood. Now the trees are in peril, many of the forests are releasing gas back into the environment, speeding up climate change. With growing economic problems around the globe, there are scarce resources to buy restitution of the North American forests wiped out by pine beetles, or the Amazonian forests destroyed by weather, or deforestation for agriculture in Brazil, or the explosive fires in the American Southwest, or the death of a Siberian forest the size of Pennsylvania. 

‘So what can I do?,’ I might have said before the dream. Destruction is the way of things here. I can preserve nothing. Not one life.

And yet, I can keen myself awake. I can work for climate legislation. I can give part of my income to preservation efforts. I can measure our family’s fossil fuel use. I can make the necessary changes. I can ask my friends to join me. I can love the beauty and communion while witnessing the reality. I can stop pretending the earth will remain as I wish. In the unknowing of any being’s death, I can risk being with. 

7.
Truth: You can’t save anything. Not really. We’re on a planet careening towards a red giant.* We will die, sooner or later; our bodies will change form; our memories will leave. Thinking that we’re some body with an inside self and an outside world might even slip away (exposing the peace – or whatever— that is at the heart of us.) 

Dare: You can die trying. 

I’ve been trying to preserve things since I was a child, imagining I could keep myself safe if I can understand the rules here. In some imaginary future, I might please people or piss them off. How would I ever get that ‘right’? They would only be praising or condemning their story about me anyway. The rules are false because they suggest I need something more than this. Or that what works for you to connect with your world will also work for me. In dropping the desire to protect myself, I open myself to tears, to others, to the wild that is not separate. 

*Thanks to Benjamin Smythe for this and other insights.

Image: iStock, Pine beetles, as a result of climate change, destroy Rockies forests.

The autumn Brevity, the CEILING or SKY? Female Nonfictions After the VIDA Count issue, is focused on the important contribution of female writers to the creative nonfiction movement. Thank you to the wonderful guest editors, Susanne Antonetta, Joy Castro, and Barrie Jean Borich.

Featuring “First Bath”, an excerpt from our memoir, Wondering Who You Are.

An homage to bathing my husband at the cancer center: “His shoulders hang low and his back is bowed. His body is forty pounds lighter than it was a few days ago, before the cancer surgery, before the blood loss that caused his mind to empty its memories. His is a body without strength, without vigor, without lust, without intention, without history….”


Artwork by Gabrielle Katina

Posted at 6:07am and tagged with: cancer, TBI, Brevity Magazine, bath, PMP, Barrie Jean Borich,.

The autumn Brevity, the CEILING or SKY?  Female Nonfictions After the VIDA Count issue, is focused on the important contribution of female writers to the creative nonfiction movement. Thank you to the wonderful guest editors, Susanne Antonetta, Joy Castro, and Barrie Jean Borich. 

Featuring “First Bath”, an excerpt from our memoir, Wondering Who You Are.

An homage to bathing my husband at the cancer center: “His shoulders hang low and his back is bowed. His body is forty pounds lighter than it was a few days ago, before the cancer surgery, before the blood loss that caused his mind to empty its memories. His is a body without strength, without vigor, without lust, without intention, without history….”





Artwork by Gabrielle Katina

On Getting The Buddha

     Richard didn’t awaken like those people who had spontaneous spiritual events. He wasn’t the Buddha, or Byron Katie or Jill Bolte Taylor. And he wasn’t unlike them either. Richard had no context for creating meaning. He could not recall what happened to him (yesterday or a year ago.) He had few communication skills to explain recent events to anyone, not even to himself. His only motivation was love. As far as I could tell. And he didn’t seem to desire to tell his story either. When we aren’t constantly remembering ourselves, there’s less inclination to invent a persona to share.

     “Why did you come back to this body?” I finally asked him months after the surgery, after his heart was stronger, after his lungs stopped filling with fluid, after four days of chemotherapy, after we made it home to our bed, after he could form sentences.

     “I wanted to be with you. It didn’t feel like I was finished,” he said.

                                                                *

     Eight years after Richard’s surgery and brain injury, we watch a video of Benjamin Smythe, and invite him to stay with us for a week. He accepts. Ben, whose mantra is ‘No one is in charge. No one knows. No one is coming. Everything is over,’ came to live with us, doing everything we did in our days. We made meals together, visited with friends and family, sat in silence, sang songs, walked Green Lake park, watched college basketball, wandered in the woods, sat on the porch, and talked writing and the nature of existence. At the end of the week we were no longer strangers; we had become kinfolk, as my people say.

     One day I described something that was difficult to relate to in the more silent, less preferenced Richard whom I love, post TBI.

     “There’s nothing there to relate to,” said Ben. “He’s spaciousness.”

     His words stopped me in my tracks. Ben spoke a truth that I hadn’t had acknowledged by others. Yet, I felt it every time I was with Richard.

     “Still, there’s no problem. You gave up your husband but you got the Buddha.”

Benjamin Smythe and Sonya Lea talking on the front porch, by Richard Bandy, March 2012.

Posted at 9:39am and tagged with: Benjamin Smythe, Byron Katie, Buddha, Jill Bolte Taylor, Brain injury, TBI,.

On Getting The Buddha
     Richard didn’t awaken like those people who had spontaneous spiritual events. He wasn’t the Buddha, or Byron Katie or Jill Bolte Taylor. And he wasn’t unlike them either. Richard had no context for creating meaning. He could not recall what happened to him (yesterday or a year ago.) He had few communication skills to explain recent events to anyone, not even to himself. His only motivation was love. As far as I could tell. And he didn’t seem to desire to tell his story either. When we aren’t constantly remembering ourselves, there’s less inclination to invent a persona to share.
     “Why did you come back to this body?” I finally asked him months after the surgery, after his heart was stronger, after his lungs stopped filling with fluid, after four days of chemotherapy, after we made it home to our bed, after he could form sentences.
     “I wanted to be with you. It didn’t feel like I was finished,” he said.
                                                                *
     Eight years after Richard’s surgery and brain injury, we watch a video of Benjamin Smythe, and invite him to stay with us for a week. He accepts. Ben, whose mantra is ‘No one is in charge. No one knows. No one is coming. Everything is over,’ came to live with us, doing everything we did in our days. We made meals together, visited with friends and family, sat in silence, sang songs, walked Green Lake park, watched college basketball, wandered in the woods, sat on the porch, and talked writing and the nature of existence. At the end of the week we were no longer strangers; we had become kinfolk, as my people say.
     One day I described something that was difficult to relate to in the more silent, less preferenced Richard whom I love, post TBI.
     “There’s nothing there to relate to,” said Ben. “He’s spaciousness.”
     His words stopped me in my tracks. Ben spoke a truth that I hadn’t had acknowledged by others. Yet, I felt it every time I was with Richard.
     “Still, there’s no problem. You gave up your husband but you got the Buddha.”
Benjamin Smythe and Sonya Lea talking on the front porch, by Richard Bandy, March 2012.

The Loneliness Of A Brain Injury

An article that Sonya sent me from the New York Times, about brain injuries and the effects they have on relationships, got me thinking about things that I have blocked out of my mind. For years after my injury, I felt lonely and isolated.

The first year, I stayed in bed for days on end, unable to talk to anyone about what was going on for me. I couldnt tell anyone at the time, but I was despondent about my lack of memories, about my inability to do many of the things that I could do before my surgery, and about my general malaise. There was a sense that something was wrong, I just didn’t know what to do about it. I listened to Sonya, to my neuropsychologist, to my occupational therapist. I kept hoping that things would improve, that memories would return, that my energy would come back, that I would feel like laughing (or at least smiling) again. It was like trying to wake up from a really deep sleep, only it seemed like I couldn’t wake up for a couple of years.

If you’d asked me how I was doing during that time I would have told you that “I’m fine” I didn’t know what was going on inside me, and I had no way to explain it. I was waiting for things to feel right again, or if not right, then at least better. And eventually, things DID get better. I started to be able to do some things around the house, some cleaning, some shopping. I even made a dinner one night for Sonya and I. And then I started working with people again as a healer, and I found that even though I couldn’t explain to patients what was going on for them, my hands could work without me even knowing exactly what they were doing…and people were getting better!

This is not to say that the feelings of loneliness were gone. I remember shortly after returning to Seattle, I finally got up the courage to call up one of my former employees, a great guy that I had socialized with prior to my diagnosis. He was happy to hear from me and we made plans to go out kayaking one Saturday afternoon. When I got there, however, I soon realized that my communication skills as well as my physical prowess wasn’t up to where I though it was. I fumbled a “hello” & “how are you doing” — the only words that came out of my mouth during an agonizing hour that we spent together. My post surgery body couldn’t even lift me out of the kayak after twenty minutes of paddling We had to ground the kayak on the shore (much to his chagrin) before I was able to disembark. I felt embarrassed and weak and useless all over again…and I wasn’t able to tell him why. I didn’t even tell Sonya for several weeks what I had felt while I was there.

The friend never returned my call to him a few weeks later to try and reconnect. I have realized that not everyone that I knew in my former life wants to be around a cancer survivor or brain-injured person. That’s been a stressful thought that through The School for The Work I’ve been able to resolve as just what is (something I’ll talk more about in a future post). I continue to improve a little at a time, month by month, in fits and spurts with some relapses into my periods of solitude. I still have periods when I feel isolated and I am incredibly grateful for my life. I have been given the time and opportunity be a part of all life has to offer.

Photo of Richard at Beach, 2010, by Sonya Lea

Posted at 8:06am and tagged with: TBI, cancer, School For The Work,.

The Loneliness Of A Brain Injury
An article that Sonya sent me from the New York Times, about brain injuries and the effects they have on relationships, got me thinking about things that I have blocked out of my mind. For years after my injury, I felt lonely and isolated. 
The first year, I stayed in bed for days on end, unable to talk to anyone about what was going on for me. I couldn’t tell anyone at the time, but I was despondent about my lack of memories, about my inability to do many of the things that I could do before my surgery, and about my general malaise. There was a sense that something was wrong, I just didn’t know what to do about it. I listened to Sonya, to my neuropsychologist, to my occupational therapist. I kept hoping that things would improve, that memories would return, that my energy would come back, that I would feel like laughing (or at least smiling) again. It was like trying to wake up from a really deep sleep, only it seemed like I couldn’t “wake up” for a couple of years. 
If you’d asked me how I was doing during that time I would have told you that “I’m fine” I didn’t know what was going on inside me, and I had no way to explain it. I was waiting for things to feel right again, or if not right, then at least better. And eventually, things DID get better. I started to be able to do some things around the house, some cleaning, some shopping. I even made a dinner one night for Sonya and I. And then I started working with people again as a healer, and I found that even though I couldn’t explain to patients what was going on for them, my hands could work without me even knowing exactly what they were doing…and people were getting better!
This is not to say that the feelings of loneliness were gone. I remember shortly after returning to Seattle, I finally got up the courage to call up one of my former employees, a great guy that I had socialized with prior to my diagnosis. He was happy to hear from me and we made plans to go out kayaking one Saturday afternoon. When I got there, however, I soon realized that my communication skills as well as my physical prowess wasn’t up to where I though it was. I fumbled a “hello” & “how are you doing” — the only words that came out of my mouth during an agonizing hour that we spent together. My post surgery body couldn’t even lift me out of the kayak after twenty minutes of paddling We had to ground the kayak on the shore (much to his chagrin) before I was able to disembark. I felt embarrassed and weak and useless all over again…and I wasn’t able to tell him why. I didn’t even tell Sonya for several weeks what I had felt while I was there.
The friend never returned my call to him a few weeks later to try and reconnect. I have realized that not everyone that I knew in my former life wants to be around a cancer survivor or brain-injured person. That’s been a stressful thought that through The School for The Work I’ve been able to resolve as just what is (something I’ll talk more about in a future post). I continue to improve a little at a time, month by month, in fits and spurts with some relapses into my periods of solitude. I still have periods when I feel isolated and I am incredibly grateful for my life. I have been given the time and opportunity be a part of all life has to offer.
Photo of Richard at Beach, 2010, by Sonya Lea

The Man With Few Preferences

     After we knew that Richard needed to be treated for a traumatic brain injury (TBI), we began to prepare him for interaction with the outside world. He had a team of healers — a neuropsychologist, speech therapist, occupational therapist, family doctor, family therapist, learning counselor, and cancer specialist. He also had a community that included people who taught brain gym, people who played didgeridoo, people who sang to him. Years passed. He healed. We began to notice that many parts of him that we identified as the ‘Richard’ that we knew were not returning. One “missing” part was his preferences.

      As his wife, I’d been attached to the return of my husband’s definitive self. I’d loved this knowing self — the one who knew what he wanted to eat, how he wanted to exercise, where he wanted to go, when he wanted to arrive, who he’d be when he got there. We met when we were teenagers, and even then Richard had been a young man with a persuasive magnetism. As he matured, he had asserted himself into the role of a leader. He managed twenty-one physical therapy clinics, and he had a strong sense of what he wanted to create as an athlete and family man. After his brain injury, even though he had found his way back to his profession, and was working his way into new relationships with family and friends, he wasn’t sure about much. Without a strong sense of who he was, few preferences existed.

     “What movie do you want to see?” I’d ask.

     “What do you want to see, sweetness?” he’d respond.

     He returned the question to me on matters related to our social, intellectual, emotional, financial, and spiritual lives. He was even more open-minded about food, trying vegetables he had refused to eat most of our marriage. He was rarely angry, emotionally calm (especially when I became frustrated,) and seemed to have few desires other than the simple physical ones – food, sex and warmth.

     I saw his new unattached self as young and yin. I yearned for the forceful, ‘masculine’ one I’d known. It seemed like we traded places, and I became the decision-maker. I was slow to find acceptance of the new man.

     When I told my friend P. about these changes she said, “The Great Way is not difficult for the man without attachment to preferences.” I’d read this line in the Tao Te Ching, in the beautiful Stephen Mitchell translation, and had admired the idea there, but I did not at first appreciate the new found lack of attachment in my husband. I wanted to be married to one who was defined. Like Cake says, “I want a [boy] with a mind like a diamond/I want a [boy] who knows what’s best.” 

     Soon came the day when I wanted to ask for something that had been difficult in our more traditional former marriage, something I’d never have considered asking him in the early tender stages of the brain injury. I wanted to spend a month writing and hiking in my beloved mountains in the Canadian Rockies. Alone. Before I told him what I wanted, I knew that he would support me. I knew that he would be honest about any concerns, but that his well being didn’t rely upon my choices. I was inspired by his freedom. I wanted to be the kind of partner who could love him exactly for who he is, instead of what I wanted him to become for me. 

     Richard remains a man with few preferences. My husband is showing me — Liberation is the end of a person. We are not who we think we are. Life happens whether or not his personality is present, or not. I started to wonder — was I living with the boy with a mind like a diamond? Richard has wants; he doesn’t seem to want very often, and is happy even if his wants don’t materialize. Could I be happy without my preferences too?

     In America, we’re taught that choice is the greatest sign of a healthy democracy. Yet having more choice isn’t the route to happiness. (See the TED talk with Barry Schwartz here.) It turns out that the hallmark of freedom – unlimited choices – actually causes depression and suffering in humans. This talk reminds me of the day we entered an American grocery store after having spent years living in a village in the Canadian Rockies. We were gob smacked by an entire aisle of cookies when we’d formerly had about five choices. After staring at the offerings for twenty minutes, we’d grabbed the closest bag, and got out of there fast.

     Lately I’ve been happy in the not knowing, in no one making a choice, in the sense that the choice is being made without anyone’s involvement at all.

Posted at 1:18pm and tagged with: TBI, Tao Te Ching, Stephen Mitchell, preferences, Ted Talks,.

Amor Fati   

     In the midst of Richard’s treatment for cancer I started to realize that the life we had planned was no more.  Cancer had happened inside his body, and the cancer was also happening to us, the identity of us as partners.   A friend called it ‘mutual jeopardy.’  Our vows were enacted: “I promise to be true to you in good times and in bad, in sickness and in health.”  Well, at least I was paying him back for all the terrible times he’d stuck through with me.

      We’d been warned by the Seattle doctor who did Richard’s first ‘debulking’ surgery three years earlier that what cancer specialists called cytoreductive surgery with HIPEC (Hyperthermic intraperitoneal chemotherapy) and survivors called MOAS (Mother Of All Surgeries) might take him out.  Well, in a way, he got to be right. Richard died under MOAS, once briefly on the table in ICU, and then to everything that he knew, in an anoxic insult to the brain that took his memories.

     Only one of us died that night.  Only one of us lost the remembrance of his past.  Only one of us had to relearn the entire vocabulary of his career.  Still, I share his fate.  A fate I railed against for years, angry and confused about what had happened to the ‘us’ that I identified with so intensely. Until I slowly realized that I had been given the wish I most desired. I was learning to live in amor fati, the love of my fate.

     No one is ill alone, we are shaped by another’s illness.  We can tell the sad stories about how our fate (handed down from people or society or God) limits us.  Or we can live outside of the compulsions of the past (our identity) and the future (the dream of our salvation).  The life that is waiting for us is the one that is happening right now.  Without illusions. 

     Of course if anyone had said these words to me in the first few years of his recovery I would have spouted, “You don’t have a clue what it is like living with this.”  Eight years later, I can see that the trick for me isn’t just acceptance of the conditions of the injury or disease.  It’s in full out embrace of the new life.  Like realizing that I get to hold these family memories on our behalf.  And what a rare privilege that is, for a storyteller.

(Photo by Dylan Bandy, Richard & Sonya under moonlight, 2010)

Posted at 8:48am and tagged with: caretakers, cancer, pmp, tbi, relationships, amor fati,.

Amor Fati    
     In the midst of Richard’s treatment for cancer I started to realize that the life we had planned was no more.  Cancer had happened inside his body, and the cancer was also happening to us, the identity of us as partners.   A friend called it ‘mutual jeopardy.’  Our vows were enacted: “I promise to be true to you in good times and in bad, in sickness and in health.”  Well, at least I was paying him back for all the terrible times he’d stuck through with me.
      We’d been warned by the Seattle doctor who did Richard’s first ‘debulking’ surgery three years earlier that what cancer specialists called cytoreductive surgery with HIPEC (Hyperthermic intraperitoneal chemotherapy) and survivors called MOAS (Mother Of All Surgeries) might take him out.  Well, in a way, he got to be right. Richard died under MOAS, once briefly on the table in ICU, and then to everything that he knew, in an anoxic insult to the brain that took his memories.
     Only one of us died that night.  Only one of us lost the remembrance of his past.  Only one of us had to relearn the entire vocabulary of his career.  Still, I share his fate.  A fate I railed against for years, angry and confused about what had happened to the ‘us’ that I identified with so intensely. Until I slowly realized that I had been given the wish I most desired. I was learning to live in amor fati, the love of my fate.
     No one is ill alone, we are shaped by another’s illness.  We can tell the sad stories about how our fate (handed down from people or society or God) limits us.  Or we can live outside of the compulsions of the past (our identity) and the future (the dream of our salvation).  The life that is waiting for us is the one that is happening right now.  Without illusions.  
     Of course if anyone had said these words to me in the first few years of his recovery I would have spouted, “You don’t have a clue what it is like living with this.”  Eight years later, I can see that the trick for me isn’t just acceptance of the conditions of the injury or disease.  It’s in full out embrace of the new life.  Like realizing that I get to hold these family memories on our behalf.  And what a rare privilege that is, for a storyteller.
(Photo by Dylan Bandy, Richard & Sonya under moonlight, 2010)

Thank You For Letting Me Go    

     Eight years ago, we were a family who preferred not to rely upon western medicine. But with the diagnosis of psuedomyxoma peritonei, there wasn’t any amount of herbal remedies that could deliver Richard’s body more time.  We wanted time.  Time to recover the illusion that our marriage was undying.  Time to remedy the lie that he’d done something to bring this disease on himself.  We wanted time to find a cure.

     We researched a PMP treatment that promised to take the deadly cancer out of him.  This is a kind of disembowelment and heated chemotherapy Richard called the ‘slash and burn.’  To cancer specialists, it is known as cytoreductive surgery with HIPEC (Hyperthermic intraperitoneal chemotherapy); survivors call it the MOAS (Mother Of All Surgeries.)  This mother@*%! is a ten-hour ordeal followed by five days of heated chemotherapy poured inside the body cavity. I was frightened of this treatment.

      It was spring of 2003, and Richard had a few weeks to make a choice about the radical surgery, which must occur at a cancer center located across the country.  Specialists did not talk about the cancer’s origin. No known cause, western medicine said. Unlike colon cancer, no familiality, or inherited pattern.  PMP cancer is so rare – it represents barely 1% of colorectal cancer incidents— that research had barely been initiated.  If he didn’t choose this treatment, he would likely be required to have surgery every few years and chemotherapy for the rest of his life.  You heard that right.  Quality of life, two thumbs down.

     Richard went to a cabin on Vashon Island to spend the weekend in contemplation.  I knew that whatever he decided, I wanted to be in support of his choice.  I spent the weekend alone too, to face my fears around this surgery, and to understand how to be with fretful friends. 

     In three days, Richard arrived home with a bouquet of blood-colored roses.  He handed them to me in the driveway.  “Thank you for letting me go,” he said, and I knew he meant toward the cancer treatment, and his own healing, wherever that might take him.  Even as he stood there, I could tell by the somber bow of his body that he would choose the most arduous route.  He’d already moved into a grave gaze, a disconnected stance, a serious lexicon, which I, who has never had cancer, do not know.  In that moment, I thought I’d lost him to something bigger than us.  And truthfully, I wanted him to move toward that force of healing, to be with its intensity.  My husband was now preparing himself for a taking apart, a transfiguration.

     Aboriginal shaman the world over enact death and resurrection with ritual removal or rearrangement of body parts, including a symbolic disembowelment, and journeys into strange realms.  The ‘chosen one’ is ritually killed, set out upon a wondrous journey with the sky gods, and then returned to life as the tribal shaman, with the otherworldly awareness intact.  Richard had chosen to enact the modern day version of dismantling – cancer surgery that would scrape his organs from his heart to his pelvis.  To live through it, he would need to give everything that he had.  We didn’t know what this meant at the time.

(Photo by Sonya Lea, Richard on the Oregon Coast, 2011)

    

 

 

Posted at 5:53pm and tagged with: cancer, PMP, HIPEC, chemotherapy, TBI, shaman,.

Thank You For Letting Me Go     
     Eight years ago, we were a family who preferred not to rely upon western medicine. But with the diagnosis of psuedomyxoma peritonei, there wasn’t any amount of herbal remedies that could deliver Richard’s body more time.  We wanted time.  Time to recover the illusion that our marriage was undying.  Time to remedy the lie that he’d done something to bring this disease on himself.  We wanted time to find a cure. 
     We researched a PMP treatment that promised to take the deadly cancer out of him.  This is a kind of disembowelment and heated chemotherapy Richard called the ‘slash and burn.’  To cancer specialists, it is known as cytoreductive surgery with HIPEC (Hyperthermic intraperitoneal chemotherapy); survivors call it the MOAS (Mother Of All Surgeries.)  This mother@*%! is a ten-hour ordeal followed by five days of heated chemotherapy poured inside the body cavity. I was frightened of this treatment.
      It was spring of 2003, and Richard had a few weeks to make a choice about the radical surgery, which must occur at a cancer center located across the country.  Specialists did not talk about the cancer’s origin. No known cause, western medicine said. Unlike colon cancer, no familiality, or inherited pattern.  PMP cancer is so rare – it represents barely 1% of colorectal cancer incidents— that research had barely been initiated.  If he didn’t choose this treatment, he would likely be required to have surgery every few years and chemotherapy for the rest of his life.  You heard that right.  Quality of life, two thumbs down.
     Richard went to a cabin on Vashon Island to spend the weekend in contemplation.  I knew that whatever he decided, I wanted to be in support of his choice.  I spent the weekend alone too, to face my fears around this surgery, and to understand how to be with fretful friends.  
     In three days, Richard arrived home with a bouquet of blood-colored roses.  He handed them to me in the driveway.  “Thank you for letting me go,” he said, and I knew he meant toward the cancer treatment, and his own healing, wherever that might take him.  Even as he stood there, I could tell by the somber bow of his body that he would choose the most arduous route.  He’d already moved into a grave gaze, a disconnected stance, a serious lexicon, which I, who has never had cancer, do not know.  In that moment, I thought I’d lost him to something bigger than us.  And truthfully, I wanted him to move toward that force of healing, to be with its intensity.  My husband was now preparing himself for a taking apart, a transfiguration.
     Aboriginal shaman the world over enact death and resurrection with ritual removal or rearrangement of body parts, including a symbolic disembowelment, and journeys into strange realms.  The ‘chosen one’ is ritually killed, set out upon a wondrous journey with the sky gods, and then returned to life as the tribal shaman, with the otherworldly awareness intact.  Richard had chosen to enact the modern day version of dismantling – cancer surgery that would scrape his organs from his heart to his pelvis.  To live through it, he would need to give everything that he had.  We didn’t know what this meant at the time.
(Photo by Sonya Lea, Richard on the Oregon Coast, 2011)