by Andrew DeCanniere
Last week I had the opportunity to speak with Sonya Lea, author of the outstanding recently published memoir Wondering Who You Are (Tin House Books, 2015). In it, she recounts her family’s journey in dealing with the aftermath of her husband’s acquired brain injury which came about as a result of what is termed an ‘anoxic insult,’ following a surgical procedure for Pseudomyxoma peritonei or PMP, a rare form of cancer. Read on to see what she had to say about how the memoir came about, PMP, her family’s experience, her influences and much more.
UR Chicago: When it comes to writing a memoir about family, it seems as though you often kind of have to walk a fine line. What was the inspiration for your book and when was it that you knew that this is something you wanted to write about?
Sonya Lea: I would say that the book came about before I knew it was going to be a book, as a way to try and survive the circumstances of our life. A lot of the notes and dialogue and events that happened, started out in my journal in the hospital’s cancer center. I was really trying to track what was happening to Richard, because it was so deeply mysterious, confusing and chaotic. After a period of time, when we knew he was going to survive, that he had relearned his anatomy and physiology and everything he needed to make it back to work, I went to him and asked his permission to write an essay. At that point, I had a deep need to tell our story, so I did and it went into the Southern Review in about 2007 or 2008. People really responded to it, including people who told me that I needed to write this as a book. To me, the interesting thing was the more that I went into it as a book, the more problematic the material became, because I hadn’t really fallen in love with the new man yet. It kept stirring up all this traumatic information, and I couldn’t bond with Richard while I was doing that, so I set it aside for about a year or year-and-a-half, until it became obvious to me that we were bonded again. Then, I took it back up and wrote the book straight through for about five years.
From the outset, Richard was interviewed for the book and I used his memories, his dialogue, things that were natural to him, as part of the whole experience of telling the events of the book — and he read every single version of the manuscript. There weren’t any concerns or issues there at all for him, in terms of how the story was told or what subject matter ought to be told. Our children read the parts of the book that had to do with them in particular, and I mostly wanted to make sure it was accurate to their perception of events, particularly when I’m reporting on dialogue and on scenes that they were in, moments in their lives. My daughter and I had a couple of conversations about different kinds of turning points for her — the moment she went off to college being one of them — so I could understand more of what was going on for her internally at that time. Those are all the people I really care the most about — the children and Richard — and that they felt they were being wholly conveyed in the work. I was less concerned about the material from earlier in my life because, first of all, it was such a long period of time ago, and they’re very distinct, personal memories. But I did share Advance Reader Copies with my family, so they were familiar with the material that was coming out.
UR: Before I read your book, I certainly had no idea about Richard’s condition [Pseudomyxoma peritonei, also known as PMP] and I think that a lot of other people probably aren’t familiar with it, either.
SL: Yeah. To this day, the cancer is still constantly misdiagnosed and mistreated. The problem with that is that if you get the wrong treatment initially, it can make you unable to survive or to have the treatment that can be life-saving, because of the way that the body scars up afterwards. So, I’m really hopeful that even though Richard had this kind of extraordinary experience that doesn’t happen to many people, I’m hopeful that people are more aware of the cancer itself, and of the treatment that has become the gold standard, so that they find their way to it earlier and more people have a chance to live.
UR: And how he was diagnosed even seems to have been totally out-of-the-blue.
SL: Yeah. Completely random. He was probably diagnosed 10 years before any symptoms would have shown up, because it’s such a slow growing cancer, but that made him stronger and more able to withstand the physical ordeal itself. It’s just that we thought the physical ordeal would be the worst thing he’d have to go through. We didn’t know that what he would have to go through mentally, emotionally and spiritually would end up being the real ordeal.
UR: And it’s really all the more alarming in that there aren’t any major symptoms for such a long period of time. When you think about being ill, I think that a lot of people think that there is always some kind of a sign that tips you off to the fact that something isn’t right. With this, there really are no symptoms for a very long while.
SL: Right. Later on there probably are problems with digestion that show up, but early on it’s just like ‘Ugh. I can’t lose this weight.’
UR: And then the treatment itself, which you discuss in pretty great detail, is also quite intense.
SL: It sure is. I think the cytoreductive surgery, CRS, and HIPEC — which is a heated interperitoneal chemotherapy — is one of the biggest ordeals you could go through in a surgery. That’s why survivors often call it the ‘Mother of All Surgeries.’ You have to be in good shape to do it, but it’s the only possibility for that type of cancer. Otherwise, what you’re really witnessing is more of a slow degrading of the organs.
UR: And then there was the medical error itself. That whole episode really underscores the importance not only of advocating for yourself as the patient — or having an advocate present with the patient at all times, if they cannot advocate on their own behalf — but the importance of the medical staff listening to the patient and patient’s family.
SL: And the importance of trusting your instincts. There’s nothing like gut instinct to inform you when you know something is going down that needs taking care of. You know your person better than anyone else. I think that in the wake of this, part of what was very confusing to me is that I knew that Richard had fundamentally changed. A lot of the nurses and doctors though it was the morphine, and that he’d be back to his self when it wore off, but I knew how extraordinarily different he was initially, and that something really incredible had happened to him. I think it’s just really sticking with it and making sure you’re heard.
UR: Right. In the book you say that later on, looking back, you can even pinpoint when the Richard you knew up until that point had disappeared. There was this particular instant during the making of the medical mistake. It seems like you were trying to point out that something was wrong and, as you say, it seemed as though they were more focused on technology than on the patient or what you were trying to tell them, and I think that’s often when things start to go awry — when you’re not listening to the patient or you’re not listening to the person who knows the patient better than you, the medical professional, might. That seems, to me, to be a huge part of where the problem stemmed from, too.
SL: Yeah. I think that in hindsight, what I learned is that in their deep desire to make everything okay themselves, and to try and solve a problem, they didn’t call upon the surgeon, they didn’t follow their own policies for what ought to have happened, so they didn’t get blood to him in time, and the blood that he was losing caused the oxygen deprivation and anoxic insult, which is a form of acquired brain injury. I think the worst part of the whole thing was watching that happen and not being able to do anything to change it faster.
UR: As far as the immediate effects, you had said that as a result of the error, he had a number of cognitive difficulties and basically didn’t remember anything from before the hospital.
SL: Initially, he had so many tubes running out of his body, including an intubation tube, so I didn’t know he couldn’t speak yet. I just knew that he had these physical objects that were preventing him from speaking. So, the first thing that happened when I saw him in the ICU, was that they gave him a pen and paper and he started writing. I saw this scrawl that was completely unlike the way he used to write. I thought that could just be happening because his brain and body haven’t caught up with each other yet. Then he started writing the same questions over and over again: ‘Who has been here? Who is coming? Who was here?’ That’s when I realized something in him had slid away. It was because of the nature of the questions he was asking, as well as the repetition of them. Then, when they removed the tube from his mouth, I began to see a flat affect. He had very wide, staring eyes, which rarely changed. Also, he couldn’t find his words. I could tell he was struggling inside to find his words, but language had left him. So, one of the initial effects on him was that he had aphasia which, in Richard, was being able to understand the language of everyone around him and having these complex thoughts, but not being able to find the words to express himself. It was a very, very frustrating experience. When we got back home, and we started going to speech therapy with him, then they could describe to me what had gone on with him, and what had disappeared in him. That was very helpful, but when you think about any person trying to get well, you want them to get well quickly. I thought that he’ll just do a few speech therapy sessions and then this will all be back. I thought maybe he’ll need a dozen of those sessions and then we’ll get going. It turned out that there was no improvement by doing that, and that’s when we saw the neuropsychologist and got him tested and discovered that he had a permanent disability.
UR: And, as you say, it seems to have impacted a lot. If you’re unable to communicate, which is so much of how you get along in the world, it can also alter your relationships with others, whether it’s your relationship with him or whether it’s how others related to him as well.
SL: Yeah. A lot of people drifted away. That’s quite common with people who have cancer and people who have TBIs [Traumatic Brain Injuries], who, for a variety of reasons, can’t be with you because of what they’re experiencing. He couldn’t communicate, so people who knew him as this magnetic, charismatic, outgoing, quite loquacious communicator, couldn’t find a way in to be with him. We were also living in a completely different place than we had lived before. We had left our home. We were in the process of selling our house, so that our daughter could go to a performing arts high school and enroll in an opera program that she was interested in. We planned to do that before any of this ever happened, and we just thought that Richard will come and recuperate down there and go back to his work, and then I’d follow once she’s done with high school. What that ended up doing was putting us in a position where we didn’t know anybody, and that made it even more isolating and made it even more necessary to reach out to as many communities as I could find, in order to try and sort through what was happening for me at the same time. Not only had I lost the man I’d fallen in love with, but I’d also lost our relationship at that moment. One of the things that I had to learn was that I had to grieve the loss of both those things, and I had to grieve it fully. That takes a number of years to do, as anybody who had gone through the death of a partner or an unexpected divorce knows. Relationship changes of all kinds will bring about that deep grief, but I was having to grieve while the physical body of the man that I knew was present, in front of me.
Sonya and Richard in their high school days, Blue Mountain, 1978 (Photo: John Carswell)
UR: It seems like it’s coming from two different perspectives as well. While you remember your former life with him and what that constituted, there’s this other person who has no recollection of it.
SL: Absolutely. There’s the grief of that, initially — the grief you’re the one carrying the history and that you have to let go of all of that, and also of the fact that you’re with somebody who can’t track you. A lot of relationships, in my experience, are about people tracking each others’ common experiences — ‘Oh, you know how we love that place,’ or ‘Let’s go do this thing that we share’ — but Richard couldn’t track me. He had both short-term and long-term memory loss. Even to this day, acquiring new memories is something that is difficult for him — probably the source of most of the frustration in our relationship is when he drops his accommodation strategies that would keep those things connected. I also want to say that what I think is different about this story, and different about my experience from what I have heard in other stories, is that there’s a liberation in that. When someone is not tracking you, and you get a chance to witness how freeing it is to be in the present state, it has an enormous impact. Richard didn’t have the past and he didn’t have his predicted future. When we have a strong reliance on the past, we also carry this idea of ‘This is what I want to be,’ ‘These are my goals,’ ‘This is my vision for my life,’ ‘This is how I see things happening.’ He’s just living in this really strong present moment, without a lot of preferences, because many of his preferences also slid away in that moment. What I saw was somebody who was really full of joy, incredibly present in what was going on around them, and didn’t have any guilt or shame of either what didn’t happen, or any of the dread and the fear about what might happen in the future. It was a shift for me to see that this isn’t all painful. This isn’t all difficult. It might be a little bit challenging to go over there to where he is. I started to feel my mind crumble in the same ways Richard’s mind had altered. That’s when I knew I was in love with this relationship. The curiosity of living this way and being with someone who is so free completely captured me.
UR: It also seems as if, in going through the experience, you learned a lot about yourself and about each other.
SL: I grew up the oldest of four children. My mother was often sick. My father was very busy. I got married young, I had children young. I was very responsible. Then I was thrust into this caregiver role. When I knew that Richard was safe. I was just kind of curious about what these mind changes were that he had gone through, and they had started to impact me. Then, one of the places that naturally lead me to is ‘What do I want?’ I had moved so quickly into all of these roles of being responsible, taking care of things, that I hadn’t ever really risked asking myself what I wanted. Here I was, no longer with the man that I married, but someone who didn’t have any expectations, and he didn’t have any preferences for what I might be. I then knew that I could step into doing exactly what I wanted to do, but in order to do that, I had to ask myself what I want. I really didn’t know. I honestly didn’t know. I just said, ‘Okay, we’ll try a day of doing this,’ and soon I’d spent most of the year living in that way to try out and see if that was possible. It’s kind of pretty much how we all do it, right? We try to sort out and figure out what holds us and what doesn’t hold us, you know? What are the ways that we are really confining ourselves, but it ended up being the best mid-life thing that I could ever do for myself, because it led me back to not needing to be defined by the culture — not needing to have anybody out there mirror me in order for me to be okay with myself. I would still say that I aspire to living how Richard was living in some ways, but I also got a good part of the way there just by holding onto the idea that I didn’t have to live out anyone else’s ideal of me any longer. I think that a lot of what I see in advertising, marketing and consumerism — certainly in women’s roles — are all some version of us trying to live out things that are about other people, and not about ourselves. I want most of the rest of my life to be about the truth that’s inside me, and not about what it is for other people.
UR: I guess a lot of people do that — fall into this pattern of doing what they feel may be expected of them by others or by society — and not really stop to question it and be their authentic selves.
SL: I think it’s oftentimes really unconscious. We don’t recognize we’ve given up so much to belong to something, until we question it. I really feel like Richard’s brain injury gave me a chance to question who I was. There’s this idea, particularly among straight women — straight women get really confined in literature. We don’t get to have our big adventures. There’s this idea that often the wife — and, in particular, the caregiver wife — is only allowed two possibilities. She can become and martyr and stay or abandon the situation and leave. Statistics of relationships after brain injury kind of bear this out, but it’s rarer — and I think a little bit more subversive — to ask ‘What kind of adventure can we have together? How are we both having a metamorphosis within the context of this relationship?’ I think that what I really wanted to do was to pose these different questions. Questions like ‘What is it possible to become?’ ‘How do we actually relate to each other?’ Not ‘What are the societal constraints about that?’ but ‘Who are we here? What is our marriage composed of?’ So, to me, the book really felt like a chance to be honest about that.
Family in Banff, Alberta in 1988 (Photo: Simon Photography)
UR: Apart from the shift in Richard’s relationship with you, there’s obviously an impact on the family as a whole, and in the book, I know that you touch a bit on how it impacted his relationship with both of your children, too.
SL: It really changed dramatically as well. A lot of our earlier married life — particularly when I was drinking — was very tumultuous. My kids bore the brunt of my drinking and [Richard’s] anger, and we did have a chance to heal. We had a chance to make that right before he had his cancer diagnosis, and did all of that work that you need to do to come into wholeness as a family after an experience like that. I was really happy about that. I didn’t regret that, and importantly, it gave me some skills in how to understand trauma, how to communicate and how to work with conflict, how to make a connection over and over again when the person doesn’t have the ability to hold the memory. The kids took a little longer to come to some of those same awarenesses, partly because they were at the age of going out into the world when all of this happened. It was developmentally appropriate for them to not have been home care-taking, and to be out there in the world, and they did that for themselves. They’re both artists, and Im really proud of them for having undergone that commitment to their passions at the same time this was going on. However, it did mean that it took them a longer time to bond with their father in the wake of the tragedy, because they weren’t there day in and day out. So, you know, on vacations and holidays and things of that sort, they could just get a little piece of reconnecting with him and coming to grips with what happened, and then they went back to their lives. So, integrating took a little bit of a longer time, and I would say that, to some extent, it’s still ongoing. They both have completely different relationships with him now.
UR: Not to get too clinical about it, but I also thought it’s important to touch on the whole brain injury and rehabilitation aspect of the story. While the treatment for this cancer was, arguably, pretty intense, it seems as though the rehab process was pretty intensive in and of itself.
SL: He had occupational therapy. He had neuropsychological counseling. The neuropsychologist thankfully found a volunteer situation that he could go into, so he could start getting his hands on people again. What we discovered is that, while he wasn’t verbal and the material wasn’t coming through reading — he wasn’t re-learning his anatomy and physiology by reading through it — if he got to work with clients, then a lot of that material would be recovered for him. So, he worked away at that for a good part of the year, then went and did some traveling and went back to work again, which was very helpful. When we moved back to Seattle, we decided to have him undergo another course of evaluations to find out where he was — how much he improved — and then he went back into things like group therapy, where he was with other brain injury peers, to talk about what had happened to him and learn about the nature of brain injury and all of those kinds of things. The thing about brain injury for most people is that the recovery is very long and slow. Yesterday, I was speaking with a teacher who had a brain injury who said that they are still amazed at how much rest they need. That’s the truth of it. There’s a lot of rest that’s required, because the brain needs time to repair itself.
UR: That makes sense, when you consider that it is pretty significant trauma.
SL: And you have to work so hard all the time, having to use accommodation strategies. You not only having to think, but you have to think about how to think, so it’s a double-whammy.
UR: Right. You’re expending so much more energy than you normally would. I know that you also talk about how much improvement can generally be expected with a brain injury within a given amount of time, but it seems as though there are a lot of unknowns as well. For instance, you talk about reading The Median Isn’t the Message, and how just because someone is thought to have plateaued, that doesn’t automatically mean that is where they have to remain in terms of improvement — that through different types of experiences or utilizing different types of therapies, there is the potential for improvement.
SL: I think so. It really has been that way. One of the most significant changes for us has been around travel and adventure. Every single time we did some type of trip with him, we would see that there would be a big change in the wake of that. The first time was when we were offered the opportunity to take care of a house in France. We went over there and, afterwards, he started making sentences again and being able to have conversations. A few years later, after he’d gone back to work, we decided to go to India. After that trip, his sense of humor came back. I think that there’s something about opening up to unusual situations, and we began to use risk and travel and adventure as a way to really help him. A great byproduct for me is to have a chance to go to all of these great places, but I think it’s pretty well known how plastic the brain is and how those synapses increase when challenged, and it gave us this opportunity to test that out. I think one of the major things I learned from this whole experience is that the experiment on yourself can be a worthy experiment. The medical establishment may have a layer of truth, but they don’t have all of the truth. Our neuropsychologist said to us ‘I think it would be good for you to go and travel, because he’s really motivated to go back to work, and that’s not a good thing for him right now.’ All I needed was permission that it wouldn’t hurt him to do it and we started out on that path. It ended up being one of the best things that we did for him. So, when we hear from other patients or caregivers, something we talk about is the truth of your own experience being paramount.
UR: And it seems like thinking ‘outside of the box’ — though it probably shouldn’t be considered ‘outside of the box’ to do these things, particularly when done in conjunction with perhaps more traditional forms of therapy — really didn’t hurt.
SL: It sure doesn’t.
UR: And obviously, in this case, had a lot of benefit. What you also talk about — which I thought was very important, perhaps now more than ever, given all of these changes that have recently taken place with healthcare in America — are the challenges that the healthcare system posed to you and Richard.
SL: There was such a huge barrier to getting him the initial treatment, because he still belonged to his employer’s pool. At the time, there wasn’t any Affordable Healthcare Act, so there still were pre-existing conditions. We had to pay whatever they asked for in order for him to remain a part of that pool. To do otherwise would have meant this condition would never be treated, which would have been financially devastating for us — and it is for many other people. From the beginning, having to go through arguing that this experimental treatment was the best treatment he could have, to not being able to get the care because people didn’t know he had a brain injury. It’s a strange catch-22. He had to get tested in order to confirm that he had a brain injury, but they wouldn’t pay for that testing to happen. So, I just started his treatment. I just said I didn’t care how much it was going to cost for him. I knew the earlier the treatment, the better, when it comes to brain injury. There had been all kinds of recent research that I was reading, so I said if we had to go through our savings, then we would. Within about five months, his company’s healthcare provider committed to paying for the treatment.
UR: It just seems like it adds this significant layer of complication at a time when you don’t need your life to be any more complicated than it already is. When you’re ill, you don’t need more hurdles and more barriers to be put in front of you. All you should have to be concerned with or to focus on is getting better.
SL: It sure does. And we’re lucky. I’ve heard more horror stories from people who just can’t get the treatment at all. Thankfully, there are brain injury advocates out there, people who are activists who are helping to try and break down the barriers and people who are providing alternate settings for people to learn how to advocate for themselves. They’re the ones who are really doing the big work.
UR: I can only hope that were something like this to happen today, post-Affordable Healthcare Act, that it is easier for people, and that they are more able to access the healthcare they so desperately need, more quickly. As you say, our system certainly stands in stark contrast to other systems, where perhaps you don’t need all these pre-approvals and you don’t need to jump through all of these hoops just to get the treatment you need.
SL: I do know that people diagnosed with PMP still have to jump through hoops about the treatment being paid for. It’s still considered controversial and providers still deny it. There’s a person here in Seattle who calls herself an ‘insurance warrior,’ because she helps people fight the healthcare companies who want to deny treatment. It’s crazy that 15 years after this treatment has been invented, we still have to fight insurers for it. So, that’s still happening, but I’m really happy that there aren’t any pre-existing conditions to fight. That’s very helpful in the Affordable Healthcare Act.
UR: Well, I can only hope it gets easier and easier for people to get the care they need, particularly since time is often of the essence — as it is when you are talking about brain injuries — and any delay in treatment can often alter the outcome in a very negative way. You also talk about the malpractice suit against the hospital. You say that the suit was, in part, because the hospital needs to take responsibility for their actions, but the other reason for bringing the suit against the hospital was to help other patients.
SL: It was important to us to try and do that by mounting a lawsuit. It wasn’t anything we were able to state in the lawsuit. It wasn’t legal for us to state in the lawsuit that we want the policies changed and how we want the policies to change, but by the very act of mounting a lawsuit, we knew that they were going to have to change their policies or look at why mistakes like this continue to happen, because for large corporations, money is the reason that things change. This was a huge hospital corporation that we went through the lawsuit with. I have to believe that things got better as a result of us doing it, but in the process, not only did we have to hand over all of our personal materials related to this — including having our therapist and our children be interviewed, having my diaries and journals read, having every letter that was ever written that had anything to do with Richard’s brain injury be read — but it just lasts a long time and you’re put through a lot.
I do have to say that I think that’s because of the problems with tort reform under the Bush era in this country. People who want to do something to address wrongs are really put through the wringer, and in most other countries in the world, that doesn’t happen. In Canada, where we grew up, only the aspects of the medical treatment of the brain injury are admissible in court. So, there’s quite a staggering — and, I think, intentional — way to try and intimidate people filing lawsuits. That’s part of the process here in America. I think the thing to remember is that it’s a very simple way to address a mistake. That’s just the bottom line. Most of the significant research that’s happened in the last few years indicated that lawsuits happen because of actual medical mistakes. They don’t happen because people have changing attitudes about needing to have money in their lives. They happen because of medical mistakes. So, it’s just one way to change the system so that things work better.
UR: Yeah. I was about to say it seems like an intentionally invasive process.
SL: Right, but the thing is that the system itself is protective enough, because most lawyers will not take on a case if it is not legitimate. It stops right there.
UR: And you’d actually said that you had found, in doing some research, that 90 percent of the cases are legitimate. They show wrongdoing. So, this idea of tons of frivolous lawsuits being brought against the medical profession really is overblown.
SL: Yeah. Totally overblown, as a way to make the ordinary person look criminal, which is a devastation when you consider what people go through. To get to the point to actually want to file a lawsuit means you’ve really lost so much in your life, and to make that person look criminal is just a devastation.
UR: And while, to be clear, I do not by any means believe that most in the medical field are careless individuals who take unnecessary risks with patient health, perhaps there would be fewer errors overall if the system changed. Perhaps additional precautions would be taken, which would translate to fewer errors.
SL: Exactly. I think there’s research that indicates that’s true.
UR: Yours is such an important story. Is there anything else you’d like to touch on?
SL: I think one of the interesting things that has happened to me as a result of writing this book, and learning that I could be vulnerable and honest in writing about our trauma, is that it put me close to people who’ve been through trauma. I now am teaching service members and veterans who have combat trauma — and who have experienced military sexual trauma — and I teach all around the world and through many online programs and personal classes, people who have experienced many different kinds of trauma that writing is a form of medicine for them. Connecting with their own narrative and telling it with their own voice in an environment that feels safe to them has been profoundly healing. I think that I’ve stumbled across — or learned from mentors and others — the really significant ways that being in one’s art can continue to change and profoundly alter one’s self, but also those people who are impacted by that work of art.
UR: And, as you just alluded to, can certainly help you process the whole thing.
SL: It certainly can.
UR: Last, but not least, who are your influences in terms of writing or what book recommendations might you have?
SL: I really enjoy Margaret Atwood. I learn from her beautiful sentences and characters. I love Lidia Yuknavitch’s writing, oriented toward the body. I admire Sarah Hepola, who wrote Blackout, for her candor. Just reading widely is what has been helpful. I also really love Maggie Nelson’s The Argonauts. It’s beautiful. She’s a strong intellect. And then there’s Meghan Daum’s work as well.
Sonya Lea’s essays and interviews have appeared in Salon, the Southern Review, Brevity, Cold Mountain Review, Tricycle, the Prentice Hall College Reader, The Rumpus and The Butter, and excerpts from Wondering Who You Are have received an international memoir prize and an Artist Trust Award. Lea teaches writing at Hugo House in Seattle, and she’s leading a pilot project to teach writing to women veterans through The Red Badge Project. She recently directed her first short film, Every Beautiful Thing. Originally from Kentucky, she currently lives in Seattle, Washington. Find her at www.wonderingwhoyouare.com and on Twitter @sonya_lea.
This interview originally appeared in Chicago Splash Magazine.