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,.

Can you walk your way toward love?

On the tenth anniversary of Richard being free — both of his rare cancer and his former identity — we wanted to celebrate by wandering Italy. We saved money by renting our guest bedroom on Air BNB, and found a home exchange family who offered us their beautiful apartment, and we set out with a desire to go as slow as possible. There wouldn’t be any hairpin turns in fast cars. We chose to use trains, ferries, furniculars, buses, and our feet, and to travel in the same ways Italians mostly do, collectively. We wanted to set out on unknown paths, and to take time for the things we might rush by if we’d followed a guidebook. We didn’t know it, but we were about to walk our way right into our deepening love for life.

An ancient pathway on a sacred mountain beckoned. On the Amalfi Coast, the Sentiero degli Dei, or Path of the Gods, is laced with trails first used in the Middle Ages by mules, to cart supplies up the cliffs that sweep from the Mediterranean Sea to mountains lined with olive groves. We randomly chose a guest home run by four sons and their father that turned out to be steps from the trail. Nocelle is a little mountain village that perches on sheer cliffs thousands of feet above Positano. We walked through its old walls, past ceramic signs on turrets, and flowers that cascaded over craggy stone, and goat farmers who set up shop selling limoncello and beer and pizza to hikers. At the entrance to the trail is a holy site: the Virgin Mary in a cave with a spring nearby to fill our water bottles.

Once on the trail, we could see that families still lived up here, where terraced gardens and vineyards and churches line cliff faces. This path is one of land connected to a way of life that has been happening since the villagers tucked themselves into cave homes to avoid the Saracen pirates. As we climbed over narrow trails that dropped straight to the sea, we could hear goats on the ledges above us, and then climbing further, we saw primitive stone dwellings with twig fences, and dark grottoes with swimming holes and encountered groups of Italian teenagers picnicking, enjoying the last free days before school began. The sun beamed on our backs, but the scent of lemon groves and the scamper of chameleons over hot rocks led us on.

We were hiking toward Bomerano (Agerola), where we could catch a bus, or hopefully find food and water. But when we arrived there, we realized we only wanted more time together, alone, up here where the gods seemed to be showing us something. We stayed on the trail, and circled back, to see how things might look from the other direction.

Everything seemed fragile — the fading light, the scraggy bushes, the paper petitions cast into a forlorn cave. Richard was wearing what I called his ‘Norman-you-old-poop hat, and he was resting more than usual, and I had my own tired way of making meaning from these things. We ran into a newlywed couple from California, tanned youngsters taking self-portraits of their yoga poses on a boulder overlooking the beaches. They offered to take our photo there above the pink and white village, and I felt my man’s giant arms go around me, and I wondered in that moment how long we would have together. How many miles had we walked into love, just like this one day? Where might it happen, our separation?

But it already had happened. The death of everything I knew as him. The identity death. The only death. And here I was with this one, imagining our way into another kind of life.

That day, it wasn’t la morte, what the Italians call the dirt nap. At the end of the trail that day, there were sunburns and lemon granitas and a pisolino, the catnap, forty winks, a snooze. We dreamed. We might still be dreaming.

Photos by Sonya Lea, Richard Bandy and one very svelte young couple.

Posted at 1:00pm and tagged with: Italy, amalfi, Cancer, travel, travel hacking,.

Positano sunset. Where we celebrate ten years cancer free. And being free. And love. In all of its wily guises.

Posted at 12:33am and tagged with: cancer, marriage, love, travel, sunsets, amalfi,.

Positano sunset. Where we celebrate ten years cancer free. And being free. And love. In all of its wily guises.

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.

One of the surprising aspects of recovery from a traumatic brain injury is how often and thoroughly risk-taking heals. Novel experiences brought back Richard’s speech and relating skills, improved them so dramatically that we began to call our method The Adventure Cure. Adventure could be found in world travel, wilderness excursions, recreational play, stimulating games and our favorite, in the celebration of food. I’m no Pioneer Woman, but food is really important in our lives. Food is sensuality and nourishment and divinity. Food is communication in a home where words aren’t always possible or preferred. Food provides a ritual to learn who people really are, their choices and expressions and uniqueness.

At the end of the year, Cold Mountain Review out of Appalachian State University, in my native South, will publish one of the favorite essays I’ve ever written, “The Ten Best Meals of My Life (Thus Far).” The impetus for the piece came in one of those brilliant timed-writing exercises my amazing mentor, Priscilla Long, developed for our advanced writer’s seminar.

We were studying list essays, ones like the spectacular Wallace Stevens piece, “Thirteen Ways of Looking At A Blackbird." And of course we’d read Priscilla’s incredible piece, which won the National Magazine Award, "Genome Tome: Twenty-Six Ways of Looking At Our Ancestors.” One day in class, Priscilla said, “If you were going to develop a list essay, what kind of piece would you like to write? Three minutes. Go.” On my list of lists were potential pieces like Ten Things About Being An Artist Mama, and Twenty Things Canadians Know (that Americans Won’t Imagine), and Fifty Ways To Leave Your Mother. (I’m still delving into research on the latter…) But what captivated me, as it nearly always has since the day I began cooking for our family at twelve, was the subject of food.

The memories that made it into my top ten best meals were unexpected. Not the most expensive or luxurious or quirky meals, but the events that could make my mouth savor a morsel and a moment that was forever out of reach. The first ice cream my grandfather offered me at four years old. The hearty meal after a difficult labor and delivery of our first-born. The food scarfed on the fly in a cancer hospital, when you’re exhausted and grateful to be alive. My best meals had always been about the love that certain gatherings carry, their genuine sweetness. In my piece I write of one such moment: “…it is as if our rational, vernacular selves have evaporated, and we are living on tears and elation and lenity.”

In this holiday season, share the kind of meals that make wondrous moments. What would the ten best meals of your life be? Can you make one today?

(Photo - Bar Checco, Trastevere, Italy, by Sonya Lea)

Posted at 8:07pm and tagged with: food, Italy, brain injury, meals, cancer, essays, Pioneer Woman,.

One of the surprising aspects of recovery from a traumatic brain injury is how often and thoroughly risk-taking heals. Novel experiences brought back Richard’s speech and relating skills, improved them so dramatically that we began to call our method The Adventure Cure. Adventure could be found in world travel, wilderness excursions, recreational play, stimulating games and our favorite, in the celebration of food. I’m no Pioneer Woman, but food is really important in our lives. Food is sensuality and nourishment and divinity. Food is communication in a home where words aren’t always possible or preferred. Food provides a ritual to learn who people really are, their choices and expressions and uniqueness.

At the end of the year, Cold Mountain Review out of Appalachian State University, in my native South, will publish one of the favorite essays I’ve ever written, “The Ten Best Meals of My Life (Thus Far).” The impetus for the piece came in one of those brilliant timed-writing exercises my amazing mentor, Priscilla Long, developed for our advanced writer’s seminar. 

We were studying list essays, ones like the spectacular Wallace Stevens piece, “Thirteen Ways of Looking At A Blackbird." And of course we’d read Priscilla’s incredible piece, which won the National Magazine Award, "Genome Tome: Twenty-Six Ways of Looking At Our Ancestors.” One day in class, Priscilla said, “If you were going to develop a list essay, what kind of piece would you like to write? Three minutes. Go.” On my list of lists were potential pieces like Ten Things About Being An Artist Mama, and Twenty Things Canadians Know (that Americans Won’t Imagine), and Fifty Ways To Leave Your Mother. (I’m still delving into research on the latter…) But what captivated me, as it nearly always has since the day I began cooking for our family at twelve, was the subject of food.

The memories that made it into my top ten best meals were unexpected. Not the most expensive or luxurious or quirky meals, but the events that could make my mouth savor a morsel and a moment that was forever out of reach. The first ice cream my grandfather offered me at four years old. The hearty meal after a difficult labor and delivery of our first-born. The food scarfed on the fly in a cancer hospital, when you’re exhausted and grateful to be alive. My best meals had always been about the love that certain gatherings carry, their genuine sweetness. In my piece I write of one such moment: “…it is as if our rational, vernacular selves have evaporated, and we are living on tears and elation and lenity.”

In this holiday season, share the kind of meals that make wondrous moments. What would the ten best meals of your life be? Can you make one today?

(Photo - Bar Checco, Trastevere, Italy, by Sonya Lea)

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

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

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)