My Big, Stupid Heart

Photo by Manuel Bechis on Unsplash

First of all, hello from a hiatus I didn’t intend to take.

I’ve thought about you all many times. I started several posts but kept closing the laptop and backing away.

The thing is, I’ve had a trying year.

I know, I know.

A quick skim of any day’s headlines over the last year makes it clear that any person with working empathy has had a trying year.

So let me start again: I’ve had a personally trying year. Trying enough that I had to shrink my circle to tackle the challenges of each era that year put me through, but I’m ready to return to this space if you’ll have me.

And I’m finally ready to share an update, if your hearts are willing to follow me on the journey of my big, stupid heart.

ERA ONE: THE NAKED BRAIN

Over the 2024 Fourth of July week, I started experiencing cardiac symptoms. Sweating. Heart palpitations. A tight chest. Wheezing. Scary for anyone but absolutely terrifying for a woman who doubles as a leaf on a family tree infested with heart attacks and congestive heart failure.

Fast forward through some scary preliminary tests and appointments, and the answer appeared to be a good-news-bad-news situation.

The good news was my heart was fine!

The bad news was it seemed like my anti-anxiety medication had turned on me, a hypothesis we considered confirmed when I stopped taking it and my cardiac symptoms went away.

On the one hand, this was excellent news.

On the other hand, for the first time in almost two decades, I was living my life with a naked brain during exceedingly anxious times. Personally, I was beginning to query agents, a process that strapped me into a roller coaster of panic only calmed by spending an unhealthy amount of time obsessing about researching agents. Meanwhile, in national news it was becoming horrifyingly clear that the dictator on the presidential ticket was likely to be elected….again.

While I would’ve loved to be the kind of person who could channel all that anxious energy into stumping for Harris, politics triggered literal panic attacks, so I chose a distraction closer to home—I joined a challenge to declutter and organize one small area of my home every day in September. The more things I yeeted—my town’s Buy Nothing group was truly a godsend—the less panicked I felt. In fact, decluttering my stuff decluttered my mind enough that I tentatively started to sandbox an idea for a new novel—a trilogy, even—that made me giggle.

So my naked brain and I seemed to be managing just fine until……

ERA TWO: THE RED FLAG

…I went to see a cardiologist on the advice of my PCP—better to be safe than sorry. But while he was thrilled that my cardiac symptoms disappeared after I stopped taking the antidepressant, he was far less thrilled to hear about my family history, so he sent me off for a baseline echocardiogram—basically a sonogram of the heart.

Because baselines aren’t scary, I went into that echo so carefree that even naked from the waist up, I was cracking jokes with my technician. Did she happen to see the demon lurking in the center of my heart on the screen? No? Really? But the thing was grinning right at her!

She laughed with me right up until the moment she stopped laughing. She stopped talking much at all. And when she finally did talk again, her voice was a few clicks higher as she explained that she wanted to inject my veins with a contrast dye to get a better look at my heart. Then she left the room only to return a few minutes later with a cardiologist who graduated my baseline echo from routine to red flag:

The left side of my heart was significantly enlarged, and my ejection fraction—the percentage of blood that the left side of the heart pumps back out to the body after a beat—was 23 percent.

The low end of normal for a healthy heart is 55 percent.

As you might imagine, my naked brain was beside herself.

The cardiologist told me not to panic, but I was 49 years old, and my mom had died a few years before after a battle with congestive heart failure that started decades before with an echocardiogram that revealed that her heart was enlarged right around her fiftieth birthday.

I was 49 years old, and I’d dedicated my life to writing but didn’t have a published book to show for it.

I was 49 years old, but here was a diagnosis that was likely a premonition of how my life would end.

I was 49 years old, and I wanted my mom to put a hand on my back and tell me everything was gonna be OK.

Instead, the nurse handed me a pack of tissues.

ERA THREE—A HEART IS TESTED

Cardiomyopathy can be caused in one of three main ways:

1. Illness—Your heart can enlarge as a reaction to illness, but the only illness I had in recent memory was Covid, which doesn’t generally cause cardiomyopathy, so that was quickly ruled out as the cause of my condition.

2. Genetic luck of the draw—Given that the cardiac branch of my family tree is grim, this was the likely culprit, but they had still had to test to rule out the third cause.

3. Heart Disease—Remember when the news broke of Bill Clinton’s emergency heart surgery? How they found his arteries were 90 percent clogged and whisked him off to open heart surgery immediately? I sure did. And as a fat woman with a family history of heart disease, I felt a shameful certainty that the CT would reveal that my arteries were so dangerously clogged that I’d be whisked off for bypass surgery myself.

After my echo, my cardiologist started me on a low dose of a high-octane beta blocker and scheduled a cardiac MRI, that CT scan I was so dreading, and an appointment to go over those tests with a specialist in a department that—quite frankly—couldn’t have a more alarming name if it tried: heart failure and transplantation.

The kind folks in the cardiology department assured me they were fast tracking my appointments, but given the protocol is testing followed by the appointment that provides context, the six weeks until my appointment with the specialist on December 19th felt like an eternity to my naked brain.

I leaned heavily on every mental health tool I had, but as an anxious person who calms myself by learning everything I can about whatever’s making me anxious, I didn’t have the one tool I desperately needed—clear information about my specific heart. Researching cardiomyopathy was basically useless without knowing whether I had ischemic or non-ischemic cardiomyopathy (aka whether the enlargement was caused by blocked arteries or not). My brain pinballed between grief and fear and anger and shame—no one wants to be a fat person with clogged arteries in a country that worships at the altar of diet culture.

I channeled some of my anxiety into decluttering our basement storage unit, which in retrospect might have been a mistake. That basement was packed with the detritus of our dead parents and all our old dreams. And yet when decorating for Christmas cleared some floor space, I set up a lawn chair in the empty space the Christmas box left behind and went through the old writing I’d stored in two plastic bins so enormous I’d once jokingly referred to them as coffin boxes.¹ When going through all my notes and drafts for my first novel made me break down, I called a friend and told her I felt like I was sitting in a museum of all my unfulfilled dreams.

What if the CT scan really did show blockages that forced an emergency bypass?

What if I died on the table at 49 years old?

What the hell had I done with my life?

In response to these decidedly un-merry questions, I got a serious case of the wellfuckits.

I submitted to every agent on my list that hadn’t closed for the holidays.

I made a plan to submit to presses that only opened for a short time at the start of every year.

I researched going back to school to change my path entirely.

But I also keep bursting into tears at red lights.

I looped a few friends in on what was going on with me, but certainly not everyone who’d have liked to support me, and I hope they’ll forgive me for holding my cards so close to my chest. I only had so much energy to field questions I couldn’t answer.

ERA FOUR—GOOD NEWS/BAD NEWS REDUX

Just before Christmas, we got some good news—my arteries were clear, and I was officially diagnosed with non-ischemic cardiomyopathy (NICM). But the tests also showed that this condition had been brewing for months if not years, so I had to wonder if all the heaviness and fatigue I chalked up to grieving my mother had actually been early warning signs I’d missed.

Over several weeks, my cardiologist introduced me to the other two medications in the trinity of drugs he’d called the gold standard for cardiomyopathy care. But one of those drugs quickly put me in early kidney failure, so that drug was cut almost as soon as I started it (and, thankfully, my kidney function returned to normal a few weeks after I stopped taking that drug).

But in the new year I started having cognitive issues.

I suspected something might be amiss when I finally started to read Madeline Miller’s Circe and couldn’t follow it. At first I chalked my confusion with the opening chapter up to my general ambivalence for myths—growing up on a steady diet of Catholic guilt, I wasn’t exactly eager to add scores of ancient asshole gods to my world view. But I’d loved Miller’s first book, The Song of Achilles, so I was sure I’d love Circe if I could just push past the early chapters that named legions of Greek gods in quick succession.²

And yet I bounced out of the book every time I tried.

I could still manage to read less challenging texts, but where the world normally fell away as I lost myself in a story, now reading felt like hiking a steep trail.

And writing was out of the question.

Oh, I could type up an email or notes for a new novel, but editing was impossible. One kind friend tried to assure me that the email I’d sent describing what was going on with me read just fine, but if that were true it was only because years of writing practice let me get away with dashing off a first draft email.

I took to calling this brain fog, but it was more than that. My eyes felt like they weren’t working together. I couldn’t read. I couldn’t write—not fully. After my failure to find an agent for my first novel in 2019, I’d worked hard to make peace with the idea that a life of writing and reading was meaningful to me whether or not I ever got a book published. But facing the possibility of a life without writing and reading felt unthinkable. Who even was I if I couldn’t make sense of my world through reading and writing?

Frankly, my answer to that question scared me into going back onto my anti-anxiety medication—anxiety was like wearing a lead swimsuit in the pool of life, and I was desperate to start swimming again—but while starting the anti-anxiety med again did help me swim a little bit easier in general, my literary life was still stunted.

That first chapter of Circe remained an enigma.

ERA FIVE: NAVIGATING THE VEIL

Because calling what I was experiencing brain fog led people to suggest I try getting more sleep and drinking more coffee, I started calling it the veil. During a birthday and anniversary weekend in New York City, my husband and I adopted 5-point hurricane scale to describe the severity of the veil as a kind of shorthand for how badly I needed to take a break.

A one barely phased me, but a five demanded our immediate attention.

I had to sit.

Hydrate.

Actively fight panic.

Despite the veil, we got some good news in April when a follow up echocardiogram showed the meds had strengthened my heart enough to make my ejection fraction climb from 23 to 42—halfway back to normal, my cardiologist said.

But my brain was nowhere near back to normal, and my life was shrinking.

The windows of time when my veil lifted enough to allow me to read and write were so unpredictable I had to start backing out of things.

I told the literary magazine I read for that I needed a hiatus.

I backed out of classes I was scheduled to teach.

I said no to client work.

And my own writing suffered, too. Because I could still type and was sandboxing a new book, I’d go to a coffee shop and let myself dream and type in the hopes that some future version of myself would have the capacity to make sense of the scribblings left by the writer in me who stubbornly refused to surrender her entire writing life to the veil.

Why did I suffer so long without raising my concerns with my cardiologist, you ask?

Well, it’s complicated.

For one thing, I’d spent years advocating for my mom because specialists at a different time and in a different state took one look at her extensive history of mental illness and dismissed her complaints, so as a middle-aged woman with my own history of mental illness, I worried my own complaints would be dismissed, too.

And if my cardiologist did listen to me, I was worried about being taken off another of the trio of drugs I’d been told was the gold standard for my condition. My kidneys had already rejected one of the three. If I stopped one or both of the remaining two, would I erase the gains my ejection fraction had made while I was taking them?

Mostly though, I was just anxious.

But my cardiologist was a dream who apologized for putting me on a drug that tanked my quality of life—I think what got through to him was reminding him I was a writer, so not being able to read and write was basically an existential death for me on par with if he was suddenly unable to treat patients.³ He told me that the best medications for me were the meds I tolerated and that I shouldn’t put on a brave face. That our goal should be to refuse to settle for anything less than 100 percent. Then he detailed a series of four experiments with dosing and getting on and off meds to pinpoint which variable was causing my cognitive issues.

I’ll spare you all the twists and turns—they were legion—but I will happily report that after we identified the likely culprit and gave it time to work its way out of my system, I took myself out to a coffee shop and—with some trepidation—opened Circe.

When I closed it again at the start of chapter four, I cried with relief.

Then I went to work decoding all my notes for the new book.

ERA SIX: ALMOST BACK TO NORMAL

Which basically brings me back to you, dear Hibou owlets.

My brain is mostly fine—I get more tired, but I’m 50 now, so maybe that’s to be expected—and my heart seems like it’s hanging in there, but I was asymptomatic when I was diagnosed, so who knows?

In any case my next echo is in November—at which point I’ll know for certain if giving up the offending drug cost me the gains my heart made in April.

For now, though, I’m happy to report that all that sandboxing I did, veil be damn, yielded a kickass story bible for a trilogy I’m excited to dig into, though I haven’t officially started drafting it yet.

I’d challenged myself to start on August 1, but I’ve been putting it off.

But today’s post isn’t about finding my way back to putting words on a page.⁴

Today’s not about updating you on my querying process, either⁵

No, today is about updating you about my roller coaster of a year courtesy of my big, stupid heart.

May it beat long enough for me to write all the books my veil-free brain can dream up, whether or not they ever get published.

1. Ah, the landmines our younger selves inadvertently set for our future selves, huh?

2. Don’t come at me about the distinction. I get there were gods, demigods, lesser deities, monsters, and probably some other category of being I’ve missed entirely, but please believe me when I say I don’t give a flying Icarus.

3. The word existential came out of a marathon session I had with ChatGPT one Saturday afternoon ahead of an appointment with my cardiologist—I knew I would get one shot to really make my case and I was struggling to describe something that felt ineffable. But this is a whole different essay.

4. That will come soon enough—the itch is starting to tickle just beneath the exhaustion of this past year.

5. They say the book of love is long and boring, but it has nothing on the tedium involved in finding that book an agent.