“Goodest Grief is an Orchard You Know. But You Have Not Been Killed/Once”: Or, Thoughts on Scar Tissue

Sometimes I have a hard time finding a way into a story. A story I want to tell, or need to tell, but usually it’s these important ones that are the hardest to start. Because what if I start and then keep writing but I can’t write it right, can’t do it justice, can’t write what needs to be written in a good way, even if—especially if—it’s not a good story? Not an easy story, like this one I need to tell, a story that’s not a good story and I don’t want to tell it because telling it makes it true, makes it real, and yet—perhaps the only goodness in telling a hard story is the relief—a sort of solace—of telling it well.

I want that solace.

Tonight I read this poem, “Ghazal for Becoming Your Own Country” by Angel Nafis. And then, somehow, here it is, my way in, even though the poem and this story have nothing, really, in common. Not in an obvious way, and all heartache is specific to its circumstance—and yet, all heartache is also the same. It is a brave poem that speaks bravely to grief and loss, to the self that has lost and fears more loss.

It gave me a little handle on my fear and made me think I can ride my moon hide through this upcoming darkness.

(And if you are bothered by the F word in the poem, I don’t even know what to say to you.)

But enough of poetry: here is the story.

In the middle of August, just as we were planning our trip to New York, Kendell started having a hard time breathing when he exercised. I’ve not yet felt like he was fully recuperated from his cardiac arrest last April, but this was definitely a downswing. First he was having to stop after five minutes, then three, then two. He’d exercise but get out of breath. His energy started to lag and he started sleeping more, and finally—the week before our trip—I convinced him or he decided that this wasn’t normal and he should have the cardiologist check it, just in case.

So in we went, and after hearing his symptoms and listening to his heart (I have come to be able to read the merest hint of a cardiologist’s facial inflection when she hears a murmur, to prepare myself for the bad news before she says the bad news), the doctor ordered some tests, and after an EKG and an echo and a TEE (trans esophageal echo, which is a tube down the throat with a camera to look at the heart), after anxious waiting it was confirmed:

his valve, the one they just replaced last October, the one that should’ve lasted for 15 or 18 or 20 years, is already failing.

Piece by piece/The body prayers home

When he had his aortic valve replaced the second time (last October. As in: one year ago. 12 months. 52 weeks.) it was failing because of scar tissue. When the pathology came back and the surgeon explained, I thought but wait. How does replacing the valve with another valve stop the scar tissue from growing? Shouldn’t we be addressing the reason why grew? Won’t it grow again?

But I am not a cardiac surgeon or a cardiologist. I’m only a person who is starting to learn something I didn’t ever want to know, so many meanings of the word heartache.

When he had his cardiac arrest, the electrocardiologist surmised that scar tissue had grown in the layer of tissue where the heart valves are located, interrupting the electrical current. When he explained this to us, I thought but wait. Scar tissue again? Can’t anyone stop it from growing? Isn’t there a medication?

But I never thought it was still growing.

But it is. The process of healing is killing him.

So here we are, facing down his fourth major heart event in seven years. Or, more terrifying: his third major heart event in one year.

And I have to tell you. This isn’t happening to me. I don’t have to have the physical experience of the chest crack, the sternum sawed open, the heart cut, the stitching and the medications and the pain and the pain meds. I only have to witness, and try to encourage and uplift. I only have to empty pee and fetch water and rub feet and manage prescriptions.

I don’t have to suffer like he does.

(If even the medicine hurts too)

But I am tired.

I’m tired of witnessing his suffering. I’m tired of him having to suffer. I’m tired of how life keeps teaching us that you have nothing if you don’t have your health is the truest cliché in existence.

Fuck the fog back off the mirror.

I’m tired of waking every night in terror just to listen for his breath and of waking in the morning with my teeth aching from grinding them in my sleep, with my hands aching from making fists all night.

I want our life back, the life we had when he had his health (even though if I follow the trail I don’t know where that life existed). I want to just be normal.

“You’re lucky to have Amy,” one of his friends told him after he heard about another heart surgery (some people have started to think oh, Kendell, another heart surgery! No biggie, he does it all the time and others are…more compassionate, more understanding that it is worse, much worse, not easier, each time), trying to lighten the conversation. A statement that’s probably true unless you know how small my capabilities for nurturing and nursing are. But the other way around is also true: I am lucky to have him, with his laughter and his drive and the way he takes care of me by taking care of everything, by the way we work together (he runs the weed eater; I mow) and because of our history and our family and our us-ness.

I don’t want to lose him and I am terrified of losing him.

(still your heart moans bride)

Which is why we are trying it again, one more time. This time, they are trying a mechanical valve (as his others have been first bovine and then porcine). This time, we will try to come out on the other side of the odds (four percent of replaced aortic valves fail, and of those failures ten percent fail because of scar tissue, so it’s a medical issue no one pays attention to because who would make money off such a tiny percentage?), even though on the other side is life-long blood thinners and monthly INR checks and worrying about a stroke or a brain bleed for eternity.

November 14. Deep breath: we’re doing this one more time.

Goodest grief is an orchard you know. But you have not been killed

Kendell and amy 4x6

Book Review: When Breath Becomes Air by Dr. Paul Kalanithi

In the foreward to the book When Breath Becomes Air, Abraham Verghese says that by reading the book, we "see what courage sounds like," and then he encourages readers to listen and then, "in the silences between his words, listen to what you have to say back." This is what I have to say back.

In some of my book reviews, I am able to write strictly about the book. But, for the majority of the books I read, my response is so intertwined with my life experiences that sometimes I can't separate the two. When Breath Becomes Air, by Paul Kalanithi,​ which I read about a week after Kendell came home from the hospital, ​is one of those books that is completely inseparable; my response to and interaction with it are entirely woven with what I was experiencing in my life when I read it. You might think that, so soon after my husband nearly dying, I might want to avoid a book about the process of a man dying.

But it was exactly the right book for me at that time.

When breath

So this "book review" is more about me and my experiences and how they interact with the book, as well as some of my thoughts on the process of dying, than it is about the book itself. 

When Breath Becomes Air is the memoir of a neurosurgeon who, just when he is finishing his training, discovers he has lung cancer. The book explores not just his regiment of cancer treatments and process of dying—these are, in fact, not the book's focus—but his explorations as a doctor of what death means, of how we die, and, most importantly, what it means to be alive. When does life end and death begin?

Recent experiences aside, this has always been an intriguing question for me. The process of my dad's death—a day or so of hospice care at home—felt remarkably like the process of birth: some medical interaction, family members coming and going, the final moments with only the most relevant people witnessing the last breath. (The difference, of course, being that it was the last breath instead of the first.) All of it felt imbued with humanness, with a sense of this being one of the things that happens to people. I know it isn't always this way, but for him it was a process, wherein he very slowly left; the last breath was subtle. But it was also a thing I felt very strongly: he was there, and then he wasn't. That is what the book's title suggests to me, how breathing—an activity—simply becomes air moving, which is passive.

For my dad, even before he was actively dying, his breath had, on a certain level, become air. Breathing only happened because his brain made it happen, even though if his mind could have told us, it certainly would have said "stop."

There is a huge variety of other reasons this happens, though. Brain death is slow or quick, depending; sometimes the brain can keep the breathing going, and sometimes it is only a machine moving the air. If it is only a machine, is the person still "alive"? Even if the brain is controlling the breathing, but there is no real thought process—is that person still "alive"? What does "alive" really mean?

I think that, had I read this book before Kendell's cardiac arrest, I would have thought about it during those days when he was in his medical coma. What I was grateful for during those awful hours was the conversations we had had, many times over the past eight years of his surgeries, about death, dying, and what limitations we want to live with. We each have an advanced medical directive, and because Kendell and I had talked so often about getting trapped in uncooperative bodies, I knew exactly what he would want me to do: let him go.

At critical medical junctures, Kalanithi writes, "the question is not simply whether to live or die but what kind of life is worth living. . . Because the brain mediates our experience of the world, any neurological problem forces a patient and family, ideally with a doctor as a guide, to answer this question: What makes life meaningful enough to go on living?" I don't want to just be breathing and taking up space, here in body if not in mind. I also don't want my husband to go through that, either, because I know what, for him, makes life meaningful: being productive, doing things, going on hikes, taking care of his family. 

This book made me think about my answers to that question: what makes life meaningful enough to go on living? If I couldn't hike or run anymore, but I could still walk and talk and write and be with the people I love, would that be enough? If I could be physically active but my mind wasn't working well enough that I could still talk, read, write, and be creative, would that? What real, literal limitations am I willing to live with and what could I not live without?

(This is, of course, in a hypothetical situation where we could choose. During that hospital wait with Kendell, it felt like there was a tiny chance he would be OK, and a tiny chance that he would die, and an enormous possibility of being "alive"—air moving through his lungs—but not himself, and honestly: that was what terrified me the most. It was the thing I prayed the hardest for: don't let him get stuck. )

In the end, I finished this book feeling like I had had a conversation with a friend who understood me and my thoughts about death—and life. Dr. Kalanithi was, in addition to being a neurosurgeon, interested in literature, a life-long reader. He does what I imagine I would do if confronted by cancer: turn to books. Not for a cure, but for an emotional solution, a way both to escape and cope. The conversation doesn't feel finished—he didn't have enough time to write the book he wanted—and it is one I will continue having with my family. But it is also one I think our society needs to begin discussing: just because we can​ save a life, should we? Is the quality of existence worth the quantity of months we give them? When is medicine trying to do more than it can? 

As his illness progressed, Dr. Kalanithi realized that he "lived in a different world, a more ancient one, where human action paled against superhuman forces, a world that was more Greek tragedy than Shakespeare." This is because when you have any sort of life-altering medical condition, it feels like most of your choice is removed. There isn't a lot of action you can take. You can't choose yourself well. You can't just decide to get better. And often the choices you can make are either-or situations where both sides have difficulties. There are no easy choices.

But death—death. The older I get, the more firmly I believe that death, in many situations, should be a choice, should be a thing, or quite possibly the very thing, that a patient gets to control, as much as possible. I know that not everyone will agree with me, that suffering can be viewed as a normal part of life, that other people's suffering give us each a chance to serve. But all of that is an outsider observing, rather than experiencing, the suffering. When it ends should be the patient's choice, and for me and my husband, we have decided that living in interminable suffering, or even just a lingering state of nothingness, is not for us.

When Breath Becomes Air isn't really about any of what I just wrote. It's not an argument for euthanasia, even though what I found within it made me consider my position. It is a book that is both simple and profound; entirely moving and unforgettable, sad yet life-affirming, gentle and at the same time stark. People die; we stop existing. How we die, and when, is a part of our lives that we need to discuss and plan for, while at the same time using our ability to choose to create extraordinary things with the life we do have.

Creating is an Act of Hope

I have been thinking a lot this weekend about something I read on this blog post, written by a woman named Joy who I barely know through following each other on Instagram. Her words cut right to the point of what I’ve been struggling with since April:

"It’s my giant neon sign: if I’m not creating for days, weeks on end, I’m holding my breath. If I’m holding my breath, I am not abiding in Christ, and fear has stopped me in my tracks. Creating helps me push back the darkness and take a deep breath.”

The fear I experienced that early morning in April when I woke to the sound of death—I cannot say it has left me. Whenever I have to tell someone about that morning, I still start to shake and, if I’m not careful, I’ll melt down into a big puddle of tears. Kendell can tell the story through the lens of “my wife saved my life,” but I’m not certain my efforts really helped; I think it was more the timing of the policeman and then the EMTs that really saved him. But my retellings bring me back, in my memory, to the absolute terror I felt. And while the medical procedures Kendell had should mean that he never will have another cardiac arrest, the fear is still here. I am living in a space where I no longer can feel like we’re “done” with medical issues; I just feel like I am waiting for whatever comes next.

And maybe what comes next is Kaleb, whose heart check-up in June did not go well. And if I thought living in fear of the possibility of my husband’s death was difficult, translating that to my child is just…I literally can’t. I can’t talk about it or write about it or even know how to begin to deal with it. I have to look at it sideways, out of the corner of my eye.

So there’s a lot of fear around here.

Creating is an act of hope

And since that morning in April, there has been almost no creating. No writing, no delving into new quilting projects, no scrapbooking. And sure, I’ve had two enormous vacations to plan, and a graduation, and then a really busy summer.

But I think fear is mostly what is stopping me.

Creating something is an act of hope. It means you are imagining a future where the thing you create will still be looked at or used or read, that it might inspire someone else. Sitting down at my scrapbooking desk has felt nearly impossible because it is there that the what-ifs overtake me. The what-ifs that I can’t even write out, but that fill my head. I can’t make any assumptions anymore, and not only about Kendell and his heart or Kaleb and his heart. Life’s biggest lesson for me over the past decade is that people die. All the time, unexpectedly, without giving you a chance to say goodbye. I am incredibly lucky that I am on this side, that I can still hug my husband and my children, that I can send them funny texts and wash their clothes for them and kiss their foreheads when they’re sleeping.

I know that I am lucky. And blessed.

Right now is the only thing I have.

But not creating for months & months…that is a space I cannot abide for long. It’s not in my nature to not be making something, to not be working on a project or thinking about a piece of writing while I fall asleep or making a mess at my desk. It is a dark place, and even though it was terrifying at first, I have started again. And it is pushing back the darkness—just a little. It is, to use Joy’s words, like taking a deep breath. Like breathing again.

Even though I’m afraid.

Because really, the fear isn’t only for my family. Deep down, the fear is also for myself. That my life has come to nothing, that it has been meaningless and I have left no mark. That if it were me who died tomorrow and I left behind all of these people I love, would they know that I loved them? Would it have mattered that I was here? (Hopkins had it right: it is always ourselves we mourn for.)

And maybe scrapbook layouts are a silly way to make my mark. Maybe no one will care that I left them a quilt or two to huddle under when I can’t hug them back. Maybe I will never find success as a writer.

But I have to keep trying. I have to live this one life that I have, and one way I live it is by making. It is my act of faith and hope: that the world will continue on, that my children will be OK, that I will be here to witness and to love and that, if not, I will leave something that might matter to someone else.

It is the only way I know of holding back the darkness.

(I sat down to write about a scrapbook layout I finally made. I guess that will have to happen tomorrow, because this was what I needed to write today.)

A God In Ruins by Kate Atkinson: A Book Review

(FYI: There is a spoiler in this review. But I will warn you when to stop reading!)
During the first two days of Kendell's recent hospitalization, he was in that medically-induced coma and on the cooling protocol, which brought his body temperature down to 31.4 degrees in order to preserve the possibility of normal brain function. I alternated wildly—if you asked me what I thought would happen, sometimes I was certain he wasn't coming back, sometimes I was certain he'd be just fine. It was a terrifying 36 hours. Actually, "terrifying" isn't even the right word. It was like...time outside of time. Days spent waiting for uncertain medical outcomes are, to borrow Becky's words, the most boring of alarming time.
You just wait. You just wait for time to pass, and you hope, or you try not to hope, depending. 
It's time without any meaning, except for the anxiety and fear, the hoping and not hoping.
Usually I am able to fill empty time by reading, but not those hours. Between texting to keep everyone updated and just being worried, I couldn't keep my mind on a narrative. In fact, one of the nurses (who I have extremely mixed feelings about and will surely blog about again) asked me, when she came into the room and found me texting on my phone again, said "wait, aren't you a librarian? I thought you'd be reading something amazing."
(Actually, I was; I read poetry during those long hours. But "reading poetry" is sort of an invisible activity, certainly not something most people see as amazing. Even though it was so comforting to me.)
Once he was out of his coma and we knew he'd likely be OK, there were still more entire days to spend at the hospital, killing time while we waited for tests and procedures and doctors, but then—the fear of mortality having passed—I could read a novel.
God in ruinsThe book I picked out of my enormous pile of library books waiting to be read was Kate Atkinson's A God in Ruins. This is a companion novel to Life After Life, a book I adored and continue to think about. Why the WWII ruminations of a RAF pilot as the perfect book to read during my husband's hospital stay? Because you need comfort reading, something familiar, and while death and bombings aren't exactly comforting, the landscape is familiar. I've read so many books about WWII that a new one usually doesn't feel completely new. Plus, I already knew the characters.
Unlike Life After LifeA God in Ruins tells just one story, the narrative of Ursula's little brother Teddy. I'm not spoiling anything when I tell you that it is the story of both his life during the war and his life after surviving the war, a miraculous feat given that only 10% of the RAF pilots who started flying at the beginning actually survived to the end. That sense is also why it was perfect: Teddy's post-war life is a miracle (as Kendell's post-cardiac-arrest life is), and yet he struggles to find something extraordinary to do with it. As his post-war life progresses (the story flips through time, a chapter about his childhood followed by one about his marriage followed by one about the war), with marriage and a family and a career, he discovers that he didn't make it through the war to live an extraordinary life, but a normal one. It felt like a sort of...warning, perhaps, to me, to not be too grandiose in my expectations for why Kendell survived. Maybe he survived just to live his own, normal life, which is also a thing of value.
On some level, Teddy surviving but then finding a normal life is disturbing. All that death and destruction, all the fear and the near misses, only to bring him to a life of mediocrity? But on a different level, that is exactly the point. The point of trying to win the war (if it could be said that anyone "won") was to give people the chance to live normal lives.
I was absolutely OK with this direction for Teddy's story. I found myself connecting to his life in so many ways, his difficulty connecting with his daughter Viola but his contentment with his granddaughter; his bookish wisdom; his struggle to let go of his writerly ambitions. I was thinking that the point of the book was to explore the ramifications of this question: is an "average," normal life one with any meaning or worth? (Of course it is.)
But then that ending.
That ending came and I confess: it's a risky ending for me. When Ian McEwan did something similar in Sweet Tooth I was annoyed and disappointed, but I loved it when he did it in Atonement. Atwood did in with Blind Assassin and I had to almost immediately re-read it to understand how all the pieces of real/story fit together. Teddy's post-war life turning out to be just an imagined story, a what if (even though of course it's a novel, it's all what if), and the way the characters who were influenced by his life either also vanished into the imaginary ether or lived entirely different lives? Well. It really is the same thing that happened in Life After Life. It broke my heart but it didn't piss me off because I kept expecting some sort of deviation from the normal from the book, based on its predecessor. 
It broke my heart because I wanted Teddy to live.
I wanted him to live the rest of his fairly-normal, average life because that was the point, right?
Except—the ending changed the point altogether. The ending truly made it into a novel about the war, about the horribleness of any war and how no one can imagine how utterly altered individual lives and society and the world become because of war. That one life, not happening: that happened so many times, over and over, because of that war and the earlier war and all the wars. It is almost unendurable to think of it. 
Everything about this book made me sad. That title! Teddy's pre-war explorations of France and how they couldn't lead to anything because the world itself was going elsewhere. His image of the coast of France: "The coastline seems composed of solid blocks of colour and hot slices of sunshine." The glimpses of Ursula, who is living a life that doesn't exactly match up with any of the ones described in Life After Life​. Bertie's "ragbag of loveliness," which is random snippets of lovely writing that she remembers at odd times. (I do this, too. The way we say the world is what we get.) Nancy's piano playing at the end. More than anything, the way it also says something about writing itself, or the act of creating (or Art, as Teddy's mother would've said) and how novelists make characters come to life so that we mourn we they die, even though they never lived, and all in an attempt to make sense of life. A God in Ruins ends by making you aware of how impossible it is to make any sense of life, either how it ends or how it continues, sometimes impossibly.
Art, Teddy believes "should be a source of joy and comfort, of sublimation and of understanding." Books, I believe, sometimes come into our lives at exactly the right time. A God in Ruins​ did that for me. It was entirely unconnected to the events in my life, and yet it helped me make sense—brought understanding—to the events in my life.
And that is pretty sublime.

Ventricular Fibrillation or Why My Husband is A Walking Medical Miracle

Prayer by galway kinnell
We just went to bed.

It was a fairly normal evening: we ran a few errands after Kendell got home from work, we picked up some dinner. We watched an episode of The Vikings while we waited for Jake to get home from his night class and Nathan to be finished at his friend's house; we tucked Kaleb in, we talked to the Bigs about a few different things.

We went to bed.

Kendell woke me up a few minutes after I'd fallen asleep, because his nose was whistling. I nudged him and he mumbled something and then we were back asleep, except maybe that whistle didn't let me all the way back. Maybe I was on alert, in some unconscious region of my brain.

Maybe I have never really​ felt at peace since his last surgery in October. Maybe part of my sleeping self is always partly awake, listening, because once your husband's heart has been cut open and been pieced back together, maybe you never stop worrying.


We went to bed, and then I hushed his whistling nose, and then he woke me again. I didn’t know what time it was, hours later it seemed, and again it was his breathing, but this time it wasn’t a benign nose whistle. This time it was a death rattle of a breath, a screeching, gasping breath with his face screwed up tight with the agony of trying to get air into his lungs (agonal respiration I later learned, the body’s very last attempt to save itself)

and I was shaking him as hard as I could, I was screaming are you OK? And I knew he wasn’t,

so I was grabbing my phone and calling 911 while I raced around our bed to his side

and then hours

or seconds later the 911 operator was walking me through giving him CPR, I was plugging his nose and taking a breath and then lowering to breath into his mouth and I thought

I can’t do this

and I thought

I’ve kissed his mouth one million times, I can do this

and then I was breathing into his mouth and feeling my own breath only fill up his cheeks

and then I was pumping as hard as I could on his chest

and I am pretty sure I was hysterically laughing and screaming all at once, this can’t be happening

but another part of my brain was calmly reminding me of the times I’ve watched someone playing a doctor on TV give chest compressions and I knew I had to push as hard as I could even though his chest seems so fragile to me, a thinly wired cage, and I actually had Meredith Grey’s voice in my head, or maybe it was the 911 operator

who told me after some indeterminate time—perhaps three CPR rotations of breathe and compress, perhaps five—to run as fast I could to the front door, where I let in a police officer who raced back down the hall with me.

He and I got Kendell onto the floor, and he kept up the CPR while I felt his pulse at his wrist, felt my husband’s pulse, which was a sharp blare and then nothing, sharp blare, nothing, sharp---

And then the EMTs were there and I stood in the hall by my bedroom, completely numb but still making that hysterical sound around the words I can’t believe this is happening now, because now has felt like it has always been coming, ever since that first heart surgery, because who can trust that life can keep going, right there in my hallway I didn’t, right there I thought it had ended and I couldn’t bear being alone so I raced downstairs to wake up my sons who had slept through it all, and they stood in the hallway with me, holding my hand, one of them, and another’s hand on my shoulder and I stopped making that sound.

The EMTs had to shock him four times before they got his rhythm back and because I didn’t have my glasses on or my contacts in, I also couldn’t hear any of the sounds they made (or maybe my brain didn’t let me hear) because in my memory that time in the hall is entirely silent until one of the EMTs said OK, got it, let’s move him and then I could squeeze past into the bathroom for my glasses.

(When I could see I completely melted down into an ugly, ugly laugh because if Kendell could’ve seen our bedroom—the vacuum knocked over, the tv askew, medical paraphernalia tossed everywhere and five men in shoes on the carpet—he would’ve been so pissed and it seemed ridiculous that I would never be able to tell him that.)

The EMTs took Kendell to the hospital. The policeman waited for me for a couple of minutes, while I raced to put in my contacts and put on a bra. Ridiculous what you think about in moments like that, but was I was thinking of was the night before my dad died, when the hospice nurse came to give him a sponge bath and change his clothes, and he dressed my dad in my mom’s t-shirt but I made the nurse go back and put on one of his  t-shirts, because I knew my dad was dying and I didn’t want him to die in a woman’s t-shirt.

I didn’t want to go to the ER and be told my husband was dead without a bra on.

They didn’t tell me he was dead.

They took him into the same ER room where his mom died. They did medical things while I stood in the hall outside, while I sat in a chair, while some of the EMTs talked to me. I paced, I sat, I knew I had to call someone, a nurse stopped and brought me some water and asked if she could call someone for me, so I picked up my phone. I didn’t want to call or tell anyone because saying it out loud would make it real, because what even was this “it” that I needed to say out loud? I still didn’t know what was wrong. But I called his sister and she didn’t answer—it was 6:15 by now—and then I called my sister who answered by saying “what’s wrong?” and I don’t even know what I told her, but she came.

There are so many stories I could tell about those hours. The waiting. The way I flashed between calm and hysterical. The first conversation with the ICU doctor, who used terms like “possible anoxic brain injury” and “medically induced coma” and “base reflexes not responding well.” Conversations about what “DNR” really means. The moment I went back home to find our will, where our advanced directives are, and I couldn’t find it and I thought I’ll just ask Kendell, he’ll know exactly where it is and then there was a little bit more of that ugly hysterical sound.

There are so many stories and ways I could tell it, but reliving it will take time for me. Writing all of it down.

In the end, this is what happened: for unknown reasons (low potassium, slow heart rate, scar tissue build-up, congenital deformation in the sinoatrial node) Kendell’s heart went into cardiac arrest. He went into ventricular fibrillation but his breathing woke me up. The immediate CPR, the fast response of the policeman and the EMTs (they were at our house two minutes after they left the fire station), and, quite possibly, simple, inexplicable luck saved him. He was in a coma for two days, most of that while undergoing a cooling protocol to hopefully preserve his brain function. The doctor kept telling me bad news, that this and this and this were bad signs, and is it strange I am grateful he never gave me any false hope? But when they turned down the drugs and started waking Kendell up, he immediately responded. He woke up and he couldn’t breathe around the tube so he gestured until I figured out that he wanted a pen and he wrote (after a few attempts) I can’t breathe and then there was a different kind of hysterical sound.

Here is the terrifying thing: every nurse, doctor, EMT, and medical person we spoke with told us that most people don’t survive. One EMT said that Kendell was the reason he became an EMT, because 99% of people don’t survive, but Kendell did. Not only did he survive—he is OK. His short-term memory is a little fuzzy, but hopefully that will clear up with time. So, once we left the hospital—he had to get an internal defibrillator—I started looking.

And the statistics are dismal.

The highest one I found was 20%--meaning, 20% of people with cardiac arrest and v-fib live. (Eighty percent die.)

Another study said 5%.

Another one found that 1.79% of people with cardiac arrest and v-fib survive without any noticeable anoxic brain injury.

All of those numbers—they are terrifying. They make me look back on the entire experience and feel unable to understand why my husband is still alive, why he’s at work today and tomorrow he’ll go with me to Kaleb’s soccer game and he’ll be around for Mother’s Day.

It makes absolutely no sense that he is alive and normal. (Or, as I keep teasing him, as normal as he’s ever been.) I don’t understand it. He doesn’t understand it. But the fact is—the miracle is: he lived. He’s OK.

What is left is just filtering: trying to understand what happened, trying to let it change us in positive ways. I’ve learned that when something medical happens to someone in a family it happens, to some degree, to everyone in the family. I didn’t have to go through what he did, but it was fairly traumatic for me, too. (Ask me if I’ve slept well in the month since it happened. If I haven’t woken up panicked every night to make sure he’s still breathing, to make sure that I’m also still breathing.) My husband almost died. My husband should have died.

I can’t stay the same after that.

An Introvert Married to an Extrovert: the Heart-Surgery-Recuperation Undertaking

When Susan Cain's book, Quiet: The Power of Introverts in a World That Can't Stop Talking started getting a bunch of pre-publication buzz, I found a little piece of wisdom that brought me a whole bunch of inner peace. Of course, I already knew the common idea for what an introvert is, but her explanation put into words something I've tried to explain, but haven't quite managed to express, for my whole life. Being introverted isn't really about being shy, or anti-social, or selfish. It's just that being with people drains the energy of an introvert, and solitude replenishes it.

This brought me peace because I am married to an extrovert—a person who is energized by being with people. Yin and yang, it’s hard for each of us to understand that part of the other. I can’t relate to his need to have people around all the time, and he has often felt like my need for solitude was a personal rejection, that I didn't want to spend time with him. It's been one of the long-standing issues in our marriage. Not really a thing we fight over, exactly. Just a thing that tugs against each of us: he wants to spend all our time together, I need some time by myself.

Having gone through three other extreme surgery recuperations with Kendell, when he had his surgery this fall I knew exactly what to expect. Something more intense than our usual come-here/leave-me-alone tug of war, because his need for time with me wouldn't just be the norm, but a medical necessity. Medications and doctor appointment and massage and scar care and just the nurturing a person needs after such an invasive procedure. Plus my very-real and consuming fear that if I left him alone for a second, his stitched-together heart would stop working. As the time for his surgery drew near, I started shoring myself up, giving myself little pep talks that I would be OK.

All of which sounds like I don't enjoy my husband's company, which of course isn't true. What would be the point of being married if that were true? But the fact that I enjoy spending time with him doesn't negate the fact that I also need solitude. And that I wouldn't be having very much of it for a good, long expanse of time. By the fourth surgery, I knew to prepare myself. To not expect any creative time or solitude, to just hang on: January 4th would come.

Tomorrow, it has. Tomorrow, Kendell is going back to work. He isn't 100% recuperated—his energy is still low, and his back and neck hurt, and he can't lift anything heavier than 40 pounds. But that was the longest the short-term disability leave would let him stay out. So he's going back to work.

And I'll have my solitude back. My freedom to organize my days however I want. To relax in the pleasure of a quiet, empty house. To have Sacred Thursdays back (you'd better be dying if you bug me on Thursdays, let alone ask me to do something with or for you).

But I find myself surprised: I'm really sad this time is over. Maybe because I knew what to expect, because I knew I would have very minimal time to myself, I didn’t get as frustrated by the constant companionship as I might have. Instead, I really tried to enjoy our time together. To savor and appreciate it for what it was.

And I survived, even without my solitude.

We had some good times. Sure—a lot of it was hanging out at home, watching TV. Lots of hours on HGTV, which meant lots of discussions about the next phase of our life. (I would really, really like to build a new house, one that’s smaller than the one we have now, one that’s designed for when we’re grandparents. On the other hand, I’d rather stay in this house and use the extra money on traveling instead of a bigger mortgage. So maybe we’ll remodel. Maybe we’ll completely redesign our kitchen. Or maybe we’ll just refinish and get a new countertop. Tear out the carpet in the front room and the stairs? Knock down the wall so we have a little bit of “open concept”? What about charm, our house is completely charmless!) We went out to eat for lunch two or three times a week; we tried new restaurants and returned several times to old favorites (I need to cut way back now that the holidays are over!) We saw a couple of movies (the first one we went to after his surgery, Spectre, was a little too soon, and he slept through half of it; I kept having to nudge him so he didn’t snore, even though I’m not sure the three other people in the theater would’ve heard him anyway). We went for a couple of drives, and we walked around our neighborhood to get him moving again. We shopped for Christmas. We wandered around Costco holding hands and getting samples for each other. We did go to the doctor a lot!

And despite my introverted character (and my general lack of the instinct to be nurturing), I found that by taking care of him I grew closer to him. You have to understand—Kendell is the strong one in our relationship. Physically, I mean. I think he can do anything. But at the beginning, he couldn’t do much. So the little things he usually does, like carrying in the box of milk from Costco, I did instead. (I can do these things, of course. He just usually does, because he doesn’t like feeling that someone is doing something he could do.) By taking care of him, I saw how much he takes care of me.

So here I am, on the other side of his surgery. At the day I was looking forward to. I thought I’d arrive here feeling like it was the end of an ultra-marathon: exhausted, worn out, and absolutely starved. Like I would be at the end of my just-hang-on strength. But it doesn’t feel like that at all. Instead, I feel strong. I feel like it was an opportunity for connection. For making my marriage better. An opportunity that my choice to savor and appreciate has allowed me to grab hold of. Don't get me wrong: we are still yin and yang. We will still struggle and argue and slam doors and swear. We might not be perfect after this—we will still have, in fact, an imperfect, complicated marriage—but like his heart, we are working so much better.

IMG_1615 kendell and amy christmas 2015

(One day I will get him to actually smile for a picture.)

on Finding Statis—an Update on Kendell's Heart Surgery

In many ways, having a husband recuperating from a major surgery is just like having a newborn. (Except, you know: no sweet, delicious, tiny newborn.) In the beginning, when you first get home from the hospital, people are kind and bring you home-cooked meals. There is an entirely new schedule to keep track of—meds instead of breastfeeding, but it’s almost as time-consuming. You worry about germs. You feel grateful everything went smoothly and (truth be told) occasionally get a little bit stressfully obsessive about how it could’ve gone wrong. You don’t do much except stay at home.

You never, ever sleep through the night.

Which is likely why I’ve not posted the details of Kendell’s surgery so far. Three weeks later, he is slowly recuperating. This time has definitely been harder than the first time. But, he’s doing a little bit better every day. He’s going on walks and starting to exercise just a little bit (can’t do much until the sternum heals fully); he has officially entered the I’m-so-bored-I’m-grumpy stage of getting better (wheeeeeee!).

He’s coming along.

The cool thing about getting bumped from a Friday surgery and having to come in on a Saturday instead—a Saturday that’s also a holiday—is that you’re the only one in the pre-op rooms. The doctors, nurses, anesthesiologist, and surgeon all spent much more personal time with us than I think they would have if there were other surgeries. I joked with them: if you come in to do a surgery on Halloween, do you operate with a skeleton crew? They laughed but were quick to reassure me that they weren’t cutting any corners. Kendell would get just as good of work on a Saturday Halloween as he would any other day of the week.

I think they told the truth. I’m honestly a little bit in love with all of the surgical team. They kept me informed and made sure I was OK. Kendell’s surgeons warned us that surgeries like this—replacing a previously-replaced aortic valve—can take longer than the first time, up to twelve hours. Kendell’s took about six. When I first went into the waiting room (after leaving the hospital to get myself some breakfast) it was entirely empty. Once it got a little bit later, four people came in. They were siblings or maybe in-laws, and oh my goodness, they made me nuts. They were all trying to talk over each other in that self-important way that some people have. I kept thinking about how miserable their Christmases must be. I started thinking of them as the bossy family and tried to just tune them out, by reading my book (The House at Riverton) and writing in my journal.

Once the surgery was finished, the surgeon came out to tell me how it went. When he got into Kendell’s heart, he discovered that two of the three valves were covered with some sort of growth. He said he’s never seen anything like it—after doing this surgery for nearly thirty years. He has no idea what it is, and sent the old valve off to pathology so they could figure it out. (We haven’t seen the surgeon again yet, and I am dying to know the results. It’s just so strange.) The growth was so heavy, it made the valves too weighed down to open, so only one cuspid was letting blood through. The growth also made the valve difficult to remove, because it was so stiff and they didn’t want to dislodge anything while they worked. But Kendell’s body handled the procedure well and he didn’t have any complications.

After the surgeon left, I still had to wait another two hours or so until I could see Kendell. (This is because they don’t let anyone into the ICU until the patient has been extubated.) During that time, some of the bossy family had left, and other siblings had come in. They would take turns rotating in and out of the ICU to see their father. Eventually the bossy mom also showed up, and some grandkids who were too young to see their grandpa. One of them was about ten years old, and the grandma was explaining what had happened to him. “Remember how Grandpa had that problem with the big vein in his heart? And he didn’t want to have a surgery? Well, yesterday it broke, and so the doctors had to go in and fix it.”

I know: totally rude of me to eavesdrop. (But, hard to not hear when they were all just so loud.) I was putzing on my phone and half-listening to their conversation when it clicked. I contorted myself so the grandma could see me, and I said “I’m sorry, this is totally none of my business, but I’m just wondering—was your husband the man who had an emergency surgery yesterday? To repair his burst aorta?” She said “yes, how’d you know?” and then I explained that Kendell had been bumped because of his surgery. (I wasn’t rude about it. At least, I hope I wasn’t rude about it.)

Apparently, this man had known about the bulge on his aorta for more than two years, but refused to have the surgery to repair it. Just Kendell’s luck that it would burst on the day of his surgery! (That sounds flippant, but if you knew Kendell’s bad luck you’d know what I mean. If anything is going to go wrong, it goes wrong for him.) The crazy thing is that something like two-thirds of people who have burst aortas don’t make it, but it was looking like he would be OK. She apologized profusely and thanked me very sincerely for letting her husband have our surgeon. “You made 38 grandchildren very grateful,” she said.

We didn’t talk very long—Kendell’s nurse came to get me just ten minutes or so after we started talking. But it totally changed my response to the rest of the day. (This was true, actually, for his entire stay in the ICU, because the burst-aorta grandpa was next door to him, and I talked to several of his adult kids, and even though they continued to be bossy and self-important and loud, they were also kind and made sure to ask about Kendell as well as give me updates on their dad.) It made me think about the fragile nature of the heart—even though it is such a strong muscle, so many things can go wrong. Not just the heart, though. Existence itself. So many things can go wrong. And I just don’t know. In seven years, Kendell has had four major surgeries. Each time, he’s been able to rebound and then go about his life. Aside from scars, he is mostly physically normal, a walking billboard for modern medicine.

We have been blessed in so many ways. From finding the exact right surgeons for his conditions to the oddest and most life-saving timing. Blessed to avoid complications or infections. Blessed to be able to move forward with him healed.

But I keep thinking about that growth, and the one flap that was entirely normal. When they removed his original aortic valve six years ago, they were surprised to find it was a unicuspid valve. All his life, he lived with one cuspid opening and shutting to let blood leave his heart. One cuspid. And then, when we repair it, what did his heart do? It worked splendidly for a while, but eventually returned to a single working cuspid. It’s just so strange to me. Why would a growth develop on just two cuspids? Why not all three? I know that no doctor would ever tell me this, and that it is probably some medical version of magical thinking. But it is as if his body wanted stasis. Wanted to return to what it was used to for so long, and it did what it had to do. A clumsy, potentially life-threatening return to a sort of balance.

It’s just…odd.

Maybe after we see the surgeon again and find out the pathology reports, I will feel differently. Maybe this unease will fade as Kendell continues to heal. But I think it won’t entirely go away—this little nagging worry. I want what he wants, for him to go many, many years without any health issues. I want his scars to fade and not need to be reopened. I want him to not need a fifth surgery, or an eighth. I want his body to cooperate and work properly.

I want him to one day been a grandpa. We likely won’t ever have 38 grandchildren, but I hope we’ll have some, and I hope they will love him and be grateful he’s here. I hope his heart keeps beating and that his new valve will settle into his heart without any other issues.

I hope he can find a new stasis.


on The Second Open-Heart Surgery

Tonight, I came home from taking Nathan to the Halloween dance to find my husband sprawled out at the end of the hall, face-first on the floor.

My husband who, today, was supposed to have open-heart surgery and who only didn’t because he got bumped by someone else’s ruptured aorta.

My husband who, when we drove home from the hospital at 7:30 this morning, said “wouldn’t it be ironic if I died today?”

Sprawled on the floor, not moving.

“Terrified” isn’t a strong enough word for what I felt.

I dropped my purse and sprinted down the hall, which has never felt longer. In my head I had this little tiny quiet space where my voice was whispering is this really happening? This can’t be happening. Out loud, I was shrieking his name.

When I got halfway down the hall, he sat up.

Sat up totally normal, if a little bit baffled by my actions.

Cause he was just, you know, lying on the floor trying to figure out where that squeak was coming from.

So then I started sobbing and hyperventilating. I sat on Kaleb’s bed and wept. Jake came rushing upstairs, and Kendell explained what had happened, and they both laughed, but I couldn’t laugh. I cried hard and ugly, my breath coming in gasps, for ten minutes before I could calm down.

I didn’t realize until those sobs came how much worry and fear I have been carrying in relation to this surgery. He’s done it before—had open-heart surgery to replace his aortic valve. It should’ve lasted for 12-15 years, but instead, last June (not even six years later) he started having subtle signs—a little out of breath when he shouldn’t be, a sluggish metabolism, having to stop just to huff sometimes during exercise—that his yearly echo/EKG confirmed were the fault that his valve was starting to fail again.

We’ve done this before.

So in a sense, it shouldn’t be this hard. I know what to expect. Sometime tomorrow, for example, one of the surgery nurses will call me to let me know that my husband is now on the bypass machine, and I will freak out a little because of the very unimaginable quality of it. He’ll wake up confused and annoyed at all the tubes and wires that are attached to him, but still underneath, his inviolate sense of humor. He’ll have to weather the healing of his chest and endure the way it pops and creaks if he moves wrong.

He’ll recuperate and heal, and I’ll help him as much as I can. I know this because we’ve done it before.

It shouldn’t be that scary—that ugly-cry, deep-buried terror I found gushing out of me tonight.

But somehow, the fact that we’ve done it before makes it even worse. Not because we both know what to expect, but because I don’t know how to trust it again. How to trust that the surgery will be successful and that he will be ok. Because we’ve done it before and he came out fine. Fine after having his heart operated on. Can I trust that another “fine” outcome will happen again?

It feels less likely.

My friends and family keep asking me how I feel about his surgery. I think wondering—do I have any premonition? This time, I don’t. Last time I was afraid of the unknown, but I was literally never, ever afraid he wouldn’t make it. I knew he would be fine. I don’t feel like it will turn out badly, either. But I don’t have that rock-solid assurance.

But what can we do? He can’t keep on like he has been, his symptoms worsening as the summer and fall have passed. He has to face the surgeon’s knife again. And I have to trust, somehow. That it will turn out well. That if it doesn’t (I erased that phrase five times before I left it here, because writing it out might make it real) I will be OK.

I have been living with the constant worry, since June: what if Kendell dies? Mostly I think that he won’t. At least—not this time. But one day, he will.

What made me stop crying and gasping and shaking tonight was when he came into Kaleb’s room, sat down next to me on the bed, and just hugged me. Right now, he’s here. He’s here with his big shoulders and strong arms, with his foibles and angers, with his laughter and appetites. I can still touch him and laugh with him and argue with him. Get mad at him and tell him I love him and ask him what that squeak might be. I have right now, and hopefully I will have many more years of right nows, but one day I won’t, and I want to remember that more clearly. So as not to waste the right nows.

IMG_1345 kendell maybird gulch 4x5

(On our last hike, just last Sunday, before his surgery. Slower than normal but he still refused to quit and made it to our destination, Maybird Gulch. Even with his bad heart valve.)

A Pork Roast, a Knife, and Some Glue: The Story of My Sunday Morning

I just wanted to go to church on time.

Or at all, because the past three weeks I haven’t made it (due to adolescent angst). (Not mine.)

So I made to get up and get going with plenty of time to get to church by 11:00. I put the pork roast in the microwave to defrost, and then I made French toast and got everyone started on getting ready for church. Then I printed out the announcements for relief society and started to get myself ready.

Then I remembered I hadn’t put the pork in the crock pot.

So I hurried to dry off and get dressed. I gave Kendell his marching orders: he needed to take the boys to church, I’d put the pork together and then meet them over there.

I’d be a few minutes late, true. But better than not going, right?

So I start the sauce (toss the Rotel tomatoes in the blender, then mix with some brown sugar and Dr. Pepper) and open the microwave, and yes: the microwave has done its special thing, which is stop half way through the defrost time so you can turn the meat. Only I didn’t notice it had stopped because I was in the bath.

Which means it’s only partly defrosted.

And this is a big pork roast (I’m feeding three growing boys here). Too big to fit into the crock pot unless I cut it in half.

So I set it on the cutting board and find my biggest knife.

Meanwhile, Nathan is already at church waiting for us and Kaleb can’t find his tie and Jake is dragging his heels and Kendell is all “let’s leave NOW so we can walk” and Jake’s like “I’ll just stay here then and come late with mom because I am not walking” and I’m being perfectly quiet but inside my head I’m fuming at myself because I had more than two hours to get ready and yet I’m late again, and I’m fuming at Kendell because can’t he just load them up into the *&$*#ing van and take them, and I’m fuming at Jake for being such a teenager, and I’m sawing silently away at the half-thawed raw pork, and the blade gets stuck.

And instead of calmly wiggling it out like a non-silently-fuming person would do, I yank on the knife as hard as I can, with all the fuel of my fumingness behind the yank.

And it slides right out of the pork.

And slices right into my forehead.

So then I threw the knife down and I screamed every. single. swear word that was fuming around inside my head, and I clamp my hand across my forehead (immediately wondering if you can only catch trichinosis by eating raw pork? Or can it get in through a wound?). Jake and Kendell rushed over and Jake was perfectly calm. He offered to cut the pork for me and Kendell hustled me to the bathroom where I looked in the mirror at a long, narrow cut, and I’m sobbing and shaking and bleeding and my heart is pounding and I wailed but I don’t want an ugly scar! And then he put a big clump of toilet paper on it, which distracted me enough from my worries about scars because, ewww. THAT IS WHAT GAUZE IS FOR.

So I stopped shaking and crying and my heart stopped pounding because Kaleb (who had meanwhile found his tie) started telling me it could be worse, at least it didn’t cut my brain open, and you can’t shake, cry, and panic when you’re laughing.

Because really: how embarrassing is it to head to the ER (wounds requiring medical attention never happen when the doctor’s office is open, ever) to tell this story:

So, I was cutting some pork, and the knife got stuck so I yanked it out and yeah, I cut my forehead open with the back of a knife.

It’s a very common kitchen injury, the head wound.

What’s worse?

It was just shallow enough not to stitch. So I had to go to the ER, and listen to Kendell complain about how much the bill will be, and tell that story to the guy checking me in, and to the nurse who cleaned it off, and to the doctor and his two medical-student assistants.

And then they glued the stupid cut closed.

I would way rather have stitches than glue. Stitches at least look serious. (Stitches can at least be covered with a bandaid.) The glue shouldn't be covered because then forehead sweat will gather and dissolve the glue too quickly. The glue looks like I have a big, shiny glob of spit stuck to my forehead, with the cut, which turned purple, underneath.

But he promised me the scar will be smaller this way.

He better be right.

On the bright side, the pork is in the crock pot, and we’ll be having sweet pork burritos for dinner.

I was very careful not to bleed on it, I promise.


One thing I have learned about medical issues: they reveal things you might not otherwise see. Let's be honest here:

  • I'm really, really tired. Tired especially of hospitals and of the post-op experience. Tired of not being able to shake the constant feeling of impending doom.
  • I feel guilty for feeling tired. It wasn't me who suffered a day of excruciating pain, followed by 60-ish hours without food. I'm just the person fetching water refills and taking care of scars and offering encouraging words.
  • There is a reason I didn't become a nurse: I am not a nurse. I feel sorry for Kendell and I love him and I wish he felt better. I try my hardest to be nurturing and kind and gentle, to fluff pillows and hover concernedly and care about his large intestine like I should. But somehow I lack the natural ability to nurture without also feeling a little bit resentful. Mostly this is because I would like to be nurtured back.
  • I feel guilty for this nurturing failure of mine. It makes me feel like a bad wife and an all-around horrible person.
  • When I'm in a certain mood—that I can't take this anymore desperation—I would really prefer you not be nice to me. I know that's odd. But if it hits me at just the right spot, a kind word will totally knock me over. I'll start crying and not stop. So if we're talking and I keep changing the topic back to you, it's because I'm desperately afraid of your kindness. yes. that is weird.
  • I don't want to see this, but it keeps tapping my heart: some of the people I thought had my back kind of, well, don't. I thought we were closer than we really are. Maybe that's not a fair assessment to make. But I am left with a feeling that I'm on my own that, like the impending-doom feeling, I cannot shake.
  • I'm just a little bit slightly envious. OK, another weird thing to say. But part of me thinks it would be nice to have a recuperation period: ten to 14 days of mostly just lying around. Think of all the reading I could get done!
  • I also feel guilty for feeling my tiny bit of envy.
  • I have a wart on my forehead.

I know. That last one doesn't really fit. Except for I finally figured out what the bump was (after falling asleep in the chair beside Kendell's hospital bed and having a dream that it was a lump full of bugs) in the hospital. I don't care if it means yet another copay: I'm totally making an appointment with my dermatologist to have it taken off.

And I think I'll need a 10-14 day recuperation period afterward.