Nonfiction: Systole, Diastole by Darlene Young

We are utterly open with no one in the end—not mother and father, not wife or husband, not lover, not child, not friend. We open windows to each but we live alone in the house of the heart.—Brian Doyle

 

I. Atrial Systole: The First Contraction

The first contraction moves blood from the atria to the ventricles of the heart. When the ventricles begin to contract, the valves between the atria and ventricles snap shut, creating the “Lub” sound that is the first half of a heartbeat. The heart becomes closed to new blood.

It began as a feeling of something flickering at the edge of my sight on the lower right side.  After I climbed a set of stairs, that spot in the corner of my eye would throb a little. Something was different.

I told my husband about it. He is an optometrist, and knows about strange shadows. “It’s probably nothing,” he said. But a week later, it was still bothering me. “I’d like to come in,” I said, “and have you take a real look.” Later, in the chair at his office, he peered through his ophthalmoscope at my eye and caught his breath. “Oh, boy!” he said. “You weren’t kidding!” He immediately took me across the hall to the retina specialist.

It was an embolism. A tiny blood clot had made its way to my eye and blocked an artery so that I had lost sight in one area. That sight would never come back, the specialist said, but over time I would get used to it and not notice it anymore. It was a tiny spot that did not interfere with my life. “What concerns me, though,” said the specialist, “is why you got the embolism. Because you could get more. You could get a clot that travels to your brain, instead, and causes a stroke. We need to find out why this happened.” He ordered a complete work-up to screen for everything.

Then he said, “By the way, do you ever get migraines?”

Yes, I got migraines. But they had decreased significantly over the years. Nowadays I sometimes went a whole year between them. The specialist explained his question. “One of the things that can cause an embolism is patent foramen ovale (or PFO). It’s a hole in your heart. Some experts believe that PFOs cause migraines as well. If nothing else shows up on these tests, you ought to find out whether you have a hole in your heart.”

PFO! To explain why I was excited to hear him mention PFO, I have to tell you of the stories I had heard about PFO.

In the last few years, three people in my neighborhood had had holes in their hearts repaired. I had never forgotten how one of them, Joseph, had raved about the benefits of his repair. He had gotten the procedure in an effort to diminish his debilitating migraines, but what had surprised him was the burst of energy the repair gave him.  “I felt like a new man!” he said.

I had been struggling with fatigue all my life. I had listened to Joseph with envy. Simple problem, easy fix, instant benefit.

And now, in the specialist’s office, I couldn’t help fantasizing. If I had a PFO, I could get it repaired, and then I would be strong. I would have energy.

I googled PFO. I joined a forum for people who had been diagnosed with PFO. I found a link to a blog in which a woman of my age described having always had low energy. Particularly, she said, she always struggled when she went hiking. After being diagnosed with PFO, she had had the hole repaired. Now, she felt great and was running marathons.

I eagerly made an appointment to be tested for PFO.

*

Gary, boy who lived around the corner from me, was autistic. When he turned eight, he joined my son’s cub scout den where I was the den leader. I had not wanted to be a den leader—remember what I said about having low energy? And entertaining a group of boys had sounded only a little more rewarding than cleaning the rain gutters—but it was my turn.

Gary brought the number of boys in my den to eleven. Even with an assistant, I already felt outnumbered on our Tuesday afternoons. I had found that the key to avoiding chaos was detailed planning and moving quickly from one activity to the next. Knowing little about autism, I called Gary’s mother, Sandy. “I’m wondering if I could come meet with you,” I said. “Maybe you can tell me a little about Gary, to maybe give me some ideas of how to interact with him so that I can make our den meetings fun for him.”

Sandy surprised me. She did not want to meet with me. In fact, she seemed to want to get off the phone as quickly as possible. “He’s not that bad,” she said tersely. “Just be nice to him.” I wondered if I had offended her by asking. Maybe, I thought, she was just tired of having to talk about it. Or maybe I had called at a bad time.

Over the next few months, I did my best with Gary. I thought about him. I planned for him. I prayed about him. I loved him. Sometimes he was fine, just another of the boys that I had to keep busy. Other times were more difficult.

For example, the day we made paper airplanes. The boys sat around my kitchen table working carefully and with great concentration. I noticed Gary slip out of his chair to stand behind Russel. I had learned not to insist that Gary sit quietly like the other boys, so didn’t say anything to him. There was no harm in his wandering around a little. Then,

“Hey!” Russell was wincing, his hand to his scalp. “He spit on me!”

Gary grinned mischievously but did not meet my eyes (he never did).

“Gary,” I said calmly, “That’s not OK. Russell, go into the bathroom and—”

“Hey!” Thomas shrieked. Gary had stepped to Russell’s neighbor and let fly again. He was making his way around the table, spitting on each boy in turn.

“Gary—” I said, trying to get around the table in my cramped kitchen, hoping to catch him and lead him away. But he knew his time was short. Cackling, he dashed around the table, spitting on each boy in turn as they scrambled to get to their feet and escape. Then he ran into another room and hid.

After that meeting, I waited until the next time Gary missed an activity to talk to the other boys about him. I talked about autism. I talked about the importance of giving people second chances. The boys didn’t say much, but they seemed to understand.

I thought things were going OK.

But on the day of the field trip to the fishing pond, I learned otherwise. I had invited other mothers, including Sandy, to come with us, because I needed the help and the minivans. We met in the church parking lot for an opening ceremony. (“The cub scout helps the pack go,” they chanted. “The pack helps the cub scout grow. The cub scout gives good will.”)

Then I collected permission slips and told the boys to go find seats in the waiting vans. They scurried around, choosing vans with their favorite friends.

Gary was left standing alone.

I took him by the hand and led him to one van, then another. All the vans were full. All, that is, but Sandy’s. I walked him to her car. “There’s no room in the other vans,” I said. “But I’m going to get a few of the other boys to come join us in this one, so that he isn’t alone. I’ll be right back.”

“Don’t bother,” Sandy said icily.

Startled by the venom in Sandy’s voice, I turned back to her. “No,” I began, “It’s OK. I’ll just—”

“You don’t have to pretend,” she said. “You’re not fooling anyone. I know you hate him.”

My stomach lurched. “What?”

“Oh, don’t play dumb,” she snarled. “You hate him. It’s obvious. I’ve seen how you look at him. I saw how you let him walk all alone when you were coming back to your house after the nature walk—”

My mind kaleidoscoped. The nature walk? Three months ago? What had happened? Had I really let Gary walk back alone?

She was yelling now. I wasn’t listening. What had happened that day? And then it came back. The nature walk. When two boys had run ahead of the rest of the group, around a corner where I couldn’t see them. I had run to catch them, asking my assistant to bring up the rear. And something else had happened—had a boy tripped? Was there a bloody nose? I couldn’t remember the details, but it had been crazy. I remembered the relief when we all reached my yard, where the parents were already waiting in their cars to pick up the kids. I had gone into the house—to wash a wound?

Could it be that Gary had brought up the rear of our group—alone? I remembered counting the boys, making sure they had their books and scout bandannas before they ran to the cars.

I had thought it had been a successful activity.

But, nearby, Sandy had had eyes for just one boy, a boy who had apparently arrived at the house last and alone. She had sat in her car and seethed.

Now, of course, in the church parking lot, I apologized, tried to explain. But she shook her head, stony-faced.

Distressed at being so completely misunderstood, I began to weep. But Sandy shrieked, “No! Don’t you dare cry! You don’t get to cry!”

I had never seen such hate in anyone’s eyes.

I stood there, leaning into her car window, begging her to believe me that I did not hate her boy, had hardly thought of her boy at all the day of the walk (wait—was that worse?), but she would not hear me. Finally, she yelled, “Just get off of my car!” and I did. There was still the activity to get through.

*

When a trout rising to a fly gets hooked on a line and finds himself unable to swim about freely, he begins with a fight which results in struggles and splashes and sometimes an escape. Often, of course, the situation is too tough for him.

In the same way the human being struggles with his environment and with the hooks that catch him. Sometimes he masters his difficulties; sometimes they are too much for him. His struggles are all that the world sees and it naturally misunderstands them. It is hard for a free fish to understand what is happening to a hooked one.  –Karl Menninger

II. Ventricular Systole: The Second Contraction

With the contraction of the ventricles, blood moves out of the heart. Blood moves from the right ventricle towards the lungs, and from the left ventricle towards the rest of the body.

So, at the age of 44, I was diagnosed with a heart defect: Patent Foramen Ovale, or PFO. The diagnosis involved a “bubble study,” in which saline containing bubbles of air was injected into my arm while a technician watched my heart on the ultrasound. For about 20 minutes, I was carbonated.

The sound of a heartbeat comes from valves in the heart snapping shut as blood swooshes against them. Tiny automatic doors, flashlight-wielding ushers directing the blood to the right hallways, enforcing progress. If your heart is healthy, your blood moves forward: into the heart, out to the lungs to get oxygen; back into the heart, then out to your extremities. Oxygen gets delivered to your feet so that you can race to the end of the field where your kid is making a goal, and to your hands as you clap for him.

When you were in the womb, your blood did not need to cycle through lungs to be oxygenated. A hole between the two sides of the heart allowed the blood to move freely across to be pumped out, bypassing the lungs completely: a shortcut. In most people, this hole, known as the foramen ovale, closes shortly after birth, leaving them with a whole heart. But nature is mysterious, and in some infants the hole does not close completely, leaving the child with a patent (“unobstructed” or “open”) foramen ovale, or PFO—a “hole in the heart.”

My bubble test allowed the technician to see whether blood was skipping over my lungs and into the other side of the heart to be sent out to my extremities without being oxygenated. The more bubbles that could be seen crossing over, the more severe the PFO.

As I lay on the table, the ultrasound technician conducting my scan clucked her tongue. “Look,” she said, pointing to the screen.  I turned my head and saw.

Stars, fireworks—hundreds of bubbles surging from one side of the heart to the other.

The technician misunderstood my emotion. “It’s OK,” she said, patting my arm, “It’s an easy repair. Nothing to worry about!” But I wasn’t afraid of the repair. I was thinking about myself at twelve, trying not to vomit as I panted across the school field, and my P.E. teacher’s croaking voice: “Pick it up, Bird Arms! We haven’t got all day!” And at thirty, trying to add miles to my morning jog so that I could participate in the neighborhood relay but getting sick each time I pushed past three miles. And at forty, the last one of all the aunts, uncles and cousins to reach the top of the mountain during the family reunion hike. My husband had stayed with me on the trail as I apologized all the way to the top, which I reached a half an hour after everyone else, humiliated.

Now, on that table, I could see clearly that there was a reason I’ve been limited in my athletic progress. There was more to the story I’d been telling myself.

*

“The heart has reasons that reason does not know.”—Pascal

*

Researchers estimate that 20% of the population has PFO, most of whom will never know it because, they say, PFO rarely causes symptoms.

Those researchers sound awfully sure of themselves.

I’m thinking that many people with PFO are experiencing symptoms like mine but just believe that they are wimps.

Who decides what a normal, healthy body feels like? It’s like seeing colors. Remember the day you realized that your purple was not necessarily your brother’s purple? Maybe that was your first bout of existential loneliness in a strange universe. We can never know what another person sees—or feels. Thus we come up against the unbreachable boundary of skin.

All the researchers can know for sure is that while some PFOs cause obvious problems like emboli and stroke, others can lie quietly until they are found only incidentally (or not at all).

The point is that you might have a PFO yourself. Or anyone else you saw today.  If the person next to you in the elevator might have an invisible PFO that makes exercise so much harder for her than for other people, what about the person on the other side of you? What are the fishhooks you don’t know about, the invisible defects of the heart that might cause strange behavior?

We stand knee to knee and never hear the buzzing of each other’s secret troubles.   

*

Public Figures with PFO:

• Ariel Sharon, former prime minister of Israel (PFO discovered after a stroke).
• Jimmy Osmond, singer, musician, actor (PFO discovered after a stroke).
• Bret Michaels, lead singer of rock band, “Poison” (PFO discovered after a trans-ischemic attack).
• Tedy Bruschi, football player for the Patriots (PFO discovered after a stroke).

*

We are twenty-eight and thirty, my sister and I. We are lying on flimsy dorm beds in the student housing of my old university, where we have come together for a conference. I am thinking about the room we used to share together. In those days we had usually been arguing—over clothes, over whose junk was on the other person’s side of the room. But now we are grown up and friends. Today we had attended parenting classes together, and now we are up way too late eating chocolate and laughing. I am surprised by how happy it makes me to spend time with her. She is beautiful and funny, and she laughs at my jokes.

My sister gets quiet for a moment. “I’ve always wondered something,” she says. “Why didn’t you stick up for me that time in junior high when I was getting beat-up?”

“What?” I ask. I have no idea what is was talking about.

She begins to describe a day during her first year in junior high, seventh grade. I was in ninth grade at the same school. She had, for some reason, offended a bigger girl, a fellow seventh-grader, and, in the hallway after school, the bigger girl had begun threatening to beat her up.

Just at that moment, I had walked by. Her older sister, her ninth-grade older sister. I walked by. I looked at her, maybe even nodded to acknowledge her, and then turned back to my business and continued on my way. I completely ignored her.

She tells the story in great detail, as if she has rehearsed it many times in the sixteen years since it happened. And I have absolutely no recollection of it. In fact, this is the first time I have ever heard that she was bullied in seventh grade. She, the sister who is so much prettier than I, who competed in gymnastics and swimming. The one with all the friends. She was bullied? Under my nose?

Lying here I make myself go back to my ninth grade year. That year, I was still being bullied myself. I wore braces and a head-gear. I was convinced, absolutely and without doubt, that I was the biggest nerd on the face of the earth—a pariah. I remember reminding myself to stay away from my sister because she was new to the school and had no reputation yet. I had not wanted to infect her.

And yet, she had not seen me that way at all. She had wanted me—needed me—to be in her life at school. And I had let her down.

 

III. Early Ventricular Diastole: Release

As the ventricles relax at the end of their contraction, the semilunar valves at the exits of the heart snap shut, creating the “Dub” sound that is the second half of a heartbeat.

 

Bret Michaels, lead singer for the band “Poison” and sufferer of PFO, sings, “Every rose has its thorn.” Since the day Sandy exploded at me about her son, I have thought about thorns and hidden heart defects. What would it be like to live each day with the fear that your child was out of control, or unlikeable? I heard, later, that earlier that same week the local elementary school had asked Sandy to withdraw Gary because his behavior had become too difficult for the teachers to manage in a regular classroom. As she began the search for a school that could better handle Gary’s needs, she must have been mourning the life she had hoped for, the boy she had hoped he would be.

It is so easy to see in retrospect that a person’s thorny behavior is caution tape: “Vulnerability here. Proceed with care.” Maybe it is too much to ask of fallible humans, though, that we be able to realize this in the middle of things.

*

The passage by Karl Menninger that I quoted above comes from his book, The Human Mind, but that’s not where I discovered it. Chaim Potok uses it as an epigraph to one of my favorite books, The Chosen. I encountered The Chosen when I was living away from home for the first time in my life, as a nanny in Pennsylvania, far away from my native Utah. I picked the book out from the shelves at a bookstore in a resort town on the Jersey shore, where I had accompanied my employers. Ironically, I chose the book not because it was about Jews, whom I was living with and whose culture was foreign to me after my culturally homogenous Mormon upbringing, but because its title was on the “Books for the College-Bound” list my mother had sent me, and that day, in the little bookstore on the shore, I felt sophisticated compared to my friends back in Utah. I felt like someone else, someone interesting, buying that book.

That the book turned out to be about cross-cultural misunderstandings (among other things) was an exciting coincidence. But that summer, the book spoke to me about the loneliness of being misunderstood. Most of the time, I was homesick, isolated from my culture, continuously embarrassed at my sheltered upbringing which seemed so glaringly obvious in every new encounter with the world at large. (Picture me surreptitiously dumping out the Shirley Temple my employer bought me because, though he claimed it was virgin, it was a drink with a name and therefore must contain alcohol. I had heard stories of people playing “harmless” jokes on Mormon nannies, like spiking their drinks, and wanted to take no risks.) Most people, I was learning, assumed they knew me because of their encounters with oddball, prudish Mormon characters on sit-coms and enthusiastic missionaries in the park, and I often felt half-embarrassed for being who I was. Though the family I worked for treated me kindly, I feared they were secretly laughing at me and my naiveté (which, of course, I couldn’t deny—I had, after all, poured out that drink).

In Potok I found that I was not the only one clinging to a religion that others found strange, not the only one longing to see into the hearts of those around me and have my own heart seen clearly as well. In speaking to me of loneliness, Potok taught me I was not alone. I imagine he would have been surprised to hear that a young Mormon girl found that he spoke to her more understandingly about her own culture than anyone had before.

*

 IV. Late Ventrical Diastole: Refilling.

As the atria fill, the atrial and ventricular valves open again. The heart is open to new blood.

 

Here is my confession:  I lied to you when I said that I loved Gary. I thought that I did. I planned to. I tried to. I tricked myself into believing that my feelings of pity for Sandy were tenderness for her son, but the fact is that I often hoped he wouldn’t come to our den meetings. I was out of my depth, outnumbered, and afraid of chaos, which so easily broke out in den meetings even when Gary wasn’t there. But when he was there, I was afraid of the repugnance I saw in the eyes of the other boys when they looked at him, afraid that I was failing to teach them kindness (and by that did I mean pity?).

Though I know I am innocent of the purposeful neglect Sandy accused me of, I have to admit that she was right in some ways. Being a mother myself, I know how terrible is the thought that someone might dislike my child, even as I can admit to sometimes-–once in a while, after a long day—not liking my own child for a few minutes or hours. Is my assumption that Sandy must feel these same conflicts inside herself when she looks at her son just another evidence of my self-centeredness, because I am assuming that she is like me?

I wonder, too, how the fact that I was bullied as a child played into my feelings during the time I worked with Gary. Certainly, the whole situation of being in charge of a group of children was more fraught because of my own past. Maybe my worry that bullying would happen within my den (bullying of other children by Gary as well as bullying of Gary by those who disliked him) left no room in my heart for love.

I see that my own fears, like a misdirecting valve in the heart, can interfere with tenderness.

*

In the end, I did not get surgery to correct my PFO.

Dear Ms. Young:

Your provider listed below has requested authorization for the following service(s): percutaneous transcatehter closure.

After medical review, we regret to inform you that we are unable to authorize this request. The reason for this determination is that the treatment recommended (transcatheter closure for septal defects) is considered investigational/experimental and an exclusion under your benefit plan. Aetna considers transcatheter occlusion of patent foramen ovale (PFO) experimental and investigational for persons with cryptogenic stroke, transient ischemic attacks, or arterial emboli due to presumed paradoxical embolism through a PFO. Additionally, Aetna considers tranascatheter closure of PFO experimental and investigational for migraine prophylaxis and for all other indications because its effectiveness for these indications has not been established.

It seems that research does not support the surgical repair of PFO as a better prevention for stroke than blood-thinners—at least, not the few and poorly-administered studies which have been done. And, more frustrating to me, insurance underwriters have decided that anecdotal evidence of increased energy and quality of life is not a good enough reason for the repair.

I have thought about saving up for the operation.

I have thought about switching insurance companies (my neighbors, after all, had no problem getting their PFOs repaired).

I have thought about waiting a few years until better studies are done.

I might do those things.

But I might not. For one thing, there are always stories of things going wrong. As usual, the internet forums seem to contain more troubling stories than happily-ever-after stories. (I’ve observed this before. After all, it’s the people for whom things go wrong who are more likely to be on the internet complaining about their experiences. The ones for whom things work out well, like my neighbors, are too busy living their lives to go back to the forums and report the success.) I know that I’m not getting an accurate picture of the success statistics when I read these stories. But, still, they’re there. Some people have their PFOs repaired and don’t notice any difference. Some of them have complications. Some declare that things are worse than ever and they wish they’d never done it. This troubles me.

For another thing, I’ve lived my whole life like this—and it hasn’t been a bad life. I look around me and see people who can’t walk at all, people with degenerative diseases, people who are bed-bound. I can do everything I need to, and most of the things I want to. So I get a little tired. So I’ll never run a marathon. I can live with that, can’t I?

Especially now that I have an excuse for being weak, I find it remarkably easy to live my life the same as I’ve done before. I won’t hike unless I am prepared to go very, very slowly. I won’t jog at high altitudes. I won’t lift heavy weights. I nurture myself along. Now that the fears about why I can’t feel better are gone, I have become more accepting of my own limitations.

Correction: since my diagnosis, I’m not quite living my life the same as I’ve done before. I’m telling myself a new story:  it’s not that I am lazy or lacking in self-control; I am refusing shame.

*

            Ah, nothing is too late,

            Till the tired heart shall cease to palpitate.

                        –H. W. Longfellow

Darlene Young teaches creative writing at Brigham Young University and is the poetry editor of Dialogue Journal. She has published in various journals (such as North Dakota Quarterly, Atlantic Review, and Ellipsis) and anthologies (such as Fire in the Pasture and Moth and Rust). Her work has won the Elsie C. Caroll Creative Nonfiction Prize, the Academy of American Poets Prize, the Hart-Larson Poetry Prize, and the Vera Hinckley Mayhew Prize in Creative Nonfiction. She lives in South Jordan, Utah, with her husband and sons.