Wait, It Gets Worse: Love, Death, and My Transformation from Control Freak to Human Being

By Lydia Slaby

Lydia Slaby was 33 years old and had everything she believed would make her happy: three fancy private school degrees, a successful husband who was in the inner circles of Barack Obama's presidential campaign, a high-paying job as an attorney—even an enviable yoga practice. But under the surface Lydia's life was in free fall. Her new marriage was one argument after another, she had a job she never wanted, and for some reason she had begun to rapidly lose weight, eventually turning a strange shade of yellowish-green. When she made a doctor's appointment to talk about the toll of extreme stress, she was instead admitted with a diagnosis of lymphoma. As a cancer survivor, Lydia tries to piece back together her marriage, her career, and her own worth. It's an imperfect rebirth, but perfection is something she must abandon if she is to find a new, calm, healthy life. With a voice that is wise, irreverent, and filled with sharp humor, this is a story about following all the rules only to learn the hard way that control is an illusion and that love will save your life.

• Language: English
• Publisher: Independent Publishers Group
• Release date: Mar 19, 2019
• ISBN: 9781633310292

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Author

HOPE

PREFACE

THE CITY OF CHICAGO is tearing up my street, fifteen feet below my window, with massive pieces of machinery, jackhammers, and a dump truck. Even with my windows closed, the sound of crashing concrete is overwhelming, and I have work to do. Before I got sick and spent the better part of two years in and out of the hospital, I would have walked out to the men jackhammering away and politely asked them when they would be finished with the noise. Well, I would’ve been somewhat polite. Actually, even somewhat is a bit of a stretch. Because when life is not going completely as planned, a control freak’s reaction is to change life, not the plan.

And I’m definitely a control freak by nature.

The idea that humans can control their lives is an illusion that, prior to cancer, I chose to embrace. For much of my life, this idea helped me avoid most of the tough why questions: Why am I working so hard? Why do I feel guilty all the time? Why am I the only person I know who gets bronchitis every October?

Control freaks assume they have all the answers, and if they don’t, they fake it until they make it. If I don’t work hard, I won’t be partner/CEO/in power by the time I’m forty! I have no idea why I feel guilty all the time, so I’ll just ignore it! It doesn’t matter why I’m sick! I’ll just take some antibiotics, a pile of vitamin C, and do some strength training. If I’m stronger, then my body will be able to handle the bugs.

I spent the first thirty-three years of my life inhabiting this control, and it gave me two professional degrees, a husband on the verge of leaving me, and a life-threatening disease.

Changing my perspective on control did not require a dramatic change in my circumstances. I did not move to a horse farm, take off on a months-long trek, or become a yoga/surf instructor in Mexico. Don’t get me wrong, I love travel memoirs—Eat, Pray, Love and Wild are two of my favorites. But I closed each book and wondered what happened when they got home and had to buy toilet paper after being stuck in traffic all day. Did they stay all zen, or did they lose it?

What did life look like after the transformation?

I believe the ability to change in place cannot be underestimated. To begin with, it was hard, even impossible, to travel extensively when I was sick, much less contemplate moving to a different city or country. But more importantly, even though traveling to different cultures always provides a learning experience, moving for the sake of moving—without taking the time and doing the work to solve the discomfort around the process of changing my perspective—would have been a waste of my time. So I stayed in my house and my city and slogged through the work of acceptance on familiar turf.

And in my case, the work was surviving—and surpassing —cancer.

This is a cancer memoir that is about more than a diagnosis and a recovery. Cancer is humbling. It’s uncontrollable—even the medicines used to battle it are uncontrollable. It rarely provides clear answers to all the problems it reveals. As a result, it fundamentally changes the patient, with or without that person’s permission. Cancer opens a door to transformation and makes it virtually impossible to stand still and refuse to accept the change that is happening.

Nonetheless, walking through that door is a choice. I chose at first to stand still, holding on to the door jamb like an earthquake victim. Then, after a while (here’s the dramatic part), I didn’t.

This is a love story. My husband and I have battled each other and ourselves for more than twenty-two years. Much of our conflict has involved accepting the reality of life with each other—sometimes this has meant recognizing life for what it is and is not, and sometimes this has meant accepting changes that each of us has undergone. Yet somehow, we love and respect each other more now than we ever did.

This is a story of integration. I learned how fundamental it is to my health that I understand my body, my mind, and my spirit as three distinct pieces of what make me a complete human being. Each piece has a role to play and a voice to be heard, and they must work in synchronicity for me to be healthy. This is a hard lesson to learn and to remember. I’m still learning it.

This is also a story of acceptance. I had to learn that surrender is not always a bad word. In life, there are moments—many, many more moments than we recovering control freaks care to acknowledge—when the best route forward is simply to submit to life’s circumstances and see what happens.

Finally, this is my story of learning to give myself permission to be in perpetual renewal. This doesn’t mean that who I am at my core changes with the wind. I am, and remain, the person who has developed over nearly forty years of life. The skills I’ve acquired and the history I’ve lived do not change. However, over the course of my life, I created stories about that collection of facts about myself, putting them into categories such as strength and weakness, and then I built a personality around those stories. The power of the human mind is such that I started believing these stories with such fervor that, in many ways, I believed they were incontrovertible facts

With the onslaught of all my health challenges, I had the opportunity to shift my perspective. My stories lost their ossification, and my sense of myself began to stretch. Some of my weaknesses changed to strengths. Some of my proudest moments became regrets. These changes in how I constructed my own stories allowed me to start reevaluating my past, forgiving myself for some of my decisions, and giving myself permission to change.

This is my story about changing my whole life, but that change is not complete. It won’t be until I’m dead and gone. My life is now a work in progress—a work about finding grace, stillness, and calm inside myself, no matter the circumstances.

I wrote this book at first because I needed it for my own sanity as I sought healing and closure. And then I realized that writing it was really about how to find peace inside involuntary transitions, no matter what sparks the change, and it occurred to me: this skill might be useful to other people.

If everyone who read this book were to find a little bit of hope inside the chaos of transformation, that would fulfill my deep desire. Perhaps it can provide a small recipe for how to approach life’s changes with some measure of calm. What could this world look like if all of humanity stopped reaching for the past? How would things change if instead we learned from our mistakes, took a deep breath, faced reality, and got creative about our future? All it would take is a little more acceptance and a little less panic. And every now and again, a stiff bourbon.

June 2018

DIAGNOSIS

THE FIRST OBAMACARE DECISION came down from the US Supreme Court on the morning of Thursday, June 28, 2012. Even though I was overwhelmed with editing and tracking multiple documents in my own legal case, I printed out all forty-seven pages of the slip opinion and kept it front and center on my desk, waiting for a calm few minutes to read it. My friend Gene noticed it sitting there during our morning coffee catch-up: a white stack of paper on a shiny desk on the twenty-sixth floor of a high-rise in Chicago’s Loop, which housed the white-shoe law firm that employed me as a first-year associate in its corporate restructuring group.

Gene pointed to it, chuckling. Are the gods of commerce going to let you get your fix, Lydia?

Probably not, I smiled ruefully, but I’m hoping to read it on the plane to New York tomorrow. My husband, Michael, and I were heading to a friend’s black-tie wedding. I had never been to a black-tie Manhattan wedding before, and I would be damned if a case I couldn’t care less about was going to stop me.

So you’re still going? I thought this case had swallowed up about ten people. He sounded wistful, probably because his own work had just hit a lull, and we all worried (unnecessarily) about making our two thousand billable hours in order to be eligible for a bonus.

It has, I confirmed, but if everything blows up, I can bail on the rehearsal dinner and just head to the Midtown office and stay there until the service on Saturday.

I’d spent weeks plotting out the perfect dresses for both Friday and Saturday. I had lost a lot of weight in the past few months and was excited to show it off. My waist-length chestnut hair fell in shiny waves over my shoulders, a result of some ridiculous treatment I’d done the week before in preparation. An email was waiting in my inbox from a jewelry-dealer friend based out of New York with some ideas for me to borrow. I was planning on getting my nails done during lunch.

You are seeing your doctor before you leave, right? Gene’s kind face wrinkled with concern. Yesterday, after jogging across the street to grab lunch together, I’d had to stop for a moment to catch my breath.

I waved him away, already turning back to my computer. Yes, of course. I see her at eleven.

Gene laughed as he walked out the door. Between your doctor and this case, the odds of you actually attending this wedding aren’t great. Probably the same as you finding the time to do meaningful pro bono work this year.

I laughed quietly, fully aware that my personal interests did not exactly line up with my job. My work took up ten to fourteen hours a day, leaving little time for much else. But I was unsure how to make a change—or even if I wanted to. The law firm was giving me so much: experience, training, good friends, an outlandish paycheck. I was delighted with my ability to succeed in such a difficult, demanding environment. There were moments when I loved my work—the writing, the challenge, the way my mind connected dots that others couldn’t see. I loved the feeling of accomplishment that came from a job well done.

But I knew my work was eating away at a part of me that I cherished. I had no time to think. I practically had no time to breathe. I felt weighed down by stress, with only the forty minutes I stole each day to walk to and from work in the balmy Chicago summer as a respite from my own thoughts.

I felt ambivalent and swamped.

I glanced at the stack of paper that I desperately wanted to read. I knew the Supreme Court had left Obamacare intact, which was a huge win for the legislation, but I wanted to see how constitutional law had changed in the process. ConLaw was one of my favorite classes in law school (honestly, it’s most people’s favorite class in law school), but because there are only about fifty lawyers in the United States who spend all of their time arguing issues of constitutional jurisprudence, the rest of us have to do something else. I love the Constitution—love that it actually works (most of the time), that we still live by this four-page document that declared our society would be guided only by the rule of law, a fairly simple organizational structure, and a set of human rights. But every time the Supreme Court interprets that simple document, the tides shift toward progress, away from progress, parallel to progress. I like knowing what is going on.

Oh well, I thought, turning back to my corporate case and the never-ending edits to the 150-page, legally required document that nobody would ever read. I had only a couple of hours before my doctor’s appointment to finish them. I’ll read it later.

LATER TURNED INTO ten hours later. And instead of being on the plane, I was in the emergency room.

At my appointment that morning, my personal doctor had detected something off about my heartbeat. She had held me hostage until a cardiologist at the hospital could see me later that afternoon. At the news that something was wrong with my heart, Michael had walked out of his senior staff meeting at the Obama 2012 reelection campaign and sat with me while I waited. The cardiologist gave me an echocardiogram, which showed dangerous levels of fluid encasing my heart, and had unceremoniously dumped me in the ER. It was too late in the day, he explained, for him to admit me to the hospital.

Checking into a teaching hospital’s emergency room with weird symptoms immediately made me an interesting case—in all the wrong ways. I was not a gunshot victim. I hadn’t broken my leg. I wasn’t vomiting from food poisoning. My reason for being in the ER wasn’t obvious in any way. I was a perfectly healthy, athletic, thirty-three-year-old, married, childless attorney, quietly dealing with the guilt of my health distracting both my husband and I from our jobs and our lives. Except now I was also an acute cardiac patient with a swollen face.

I was unable to lie down without losing my breath. So as I sat with my legs crossed on the hospital bed in my three-walled nook, with a curtain separating me from the chaos of an urban hospital on a Thursday night, the requests began.

First request: insert an IV. This is usually not a big deal, and it wasn’t that night either. Except that about five minutes after they slid the needle and tubing into a vein on my left forearm, my left arm swelled up like a sausage.

Hey, I said, waving my left arm in the air like a windsock, did anyone notice what just happened?

Michael looked at my arm. A nurse did the same, and then walked out to get a doctor.

What the fuck? I whispered to the room, which only pinged back at me in response. I was connected to an EKG monitoring my heartbeat, which was simultaneously soothing (my heart continued to work) and alarming (the pings were not rhythmical).

We were quiet as we waited for the doctor, but the ER was not. Someone next door was demanding painkillers so insistently that the nurses had called security. Outside my nook, someone else was moaning pitifully. Soft shoes were in perpetual motion past the curtain-door, moving from one patient to the next. Quiet murmuring, cries of pain and anger, shouted instructions, the occasional crash as something was thrown against a wall or the floor…. It sounded like complete chaos.

Yet somehow, in this place dedicated to healing, the noises were managed, held inside a container of organization that kept them away from the edge of panic. It was calm chaos, which meant people were fighting for their lives. They were being cared for by those who were trained to help. Full-blown panic—or even silence—would have been immeasurably worse to my own mind, already vacillating between the two.

Second request (as the attending walked into the room and saw my arm): Let’s X-ray your chest, shall we?

I looked at her blankly, defiantly. But it’s my arm that’s swollen, not my chest.

Everything’s connected, she responded, arms crossed, recognizing a patient who wouldn’t simply comply.

But I had an echocardiogram earlier with the cardiologist. I was confused, frightened, and tired of being poked and scanned. Didn’t they see my chest then?

No, they only saw your heart, which is clearly in distress. I’d like to see if there’s anything there that would be causing that distress. Her face remained neutral.

Michael squeezed my leg in reassurance.

I persisted. But the cardiologist said it was probably viral or immune-related.

It could be. But humor me, will you? She cracked a small smile. I don’t often to get to flex my diagnosis muscles. You have something wrong with your heart; I’d like to be thorough and see what else is in your chest.

I looked at Michael.

He looked back at me and shrugged. Makes sense to me.

Acknowledging the majority rule, I submitted. Okay, let’s do it.

Michael peeked out into the main room as I moved from the bed to the wheelchair. With the state of my heart fluid, I was not allowed to walk anywhere. Before I wheeled past him, he gently squeezed my shoulder and said, There’s a guy covered in blood, lying on a gurney two feet from your curtain. You may want to close your eyes until you get to X-ray.

I smiled weakly. Thanks, bear.

I kept my eyes open. The man’s head was wrapped in a blood-soaked bandage, and the sheet covering his body from the chest down was spattered with blood. He looked at me through heavy-lidded eyes, and I looked back. Neither of us was in particularly enviable circumstances. Yet in that moment, blood and broken bones seemed easier to understand, if not fix, than whatever was going on with my magical arm. A fleeting thought wished we could trade places.

I stood up for the X-ray machine. First picture: stand facing away from the tubes, hugging the thick, white-screen contraption. This hurt. A lot. My breathing came in shorter, faster bursts, and I flailed about in my mind, seeking a way to relax. A tech had removed the EKG monitor and the sticky dots from my chest so she could get a clear picture. But with the increased pain from raising my arms and stretching my chest laterally, panic took the reins. I was having a heart attack, and no one would know until I collapsed on the linoleum tile floor.

Deep breath. Clear your mind. Deep breath. Clear your mind.

My meditation mantra floated through my mind like a huge banner in the wake of a small plane. Several days prior to this unexpected bout of medical tourism, I had decided to learn transcendental meditation, and I had completed the training just that morning. My older sister, Corinna, had been going on and on about it for years, having discovered it during her battle with Hodgkin’s lymphoma. She had amped up her lobbying efforts in the past few months as Big Law demanded more and more of my time, energy, focus, and emotions. Finally, I had given it a try, and for twenty minutes, twice a day, my brain was quiet.

If now wasn’t the moment for meditation, then I didn’t know when was.

Great, the tech said, interrupting my focus. Now turn ninety degrees to your left, and hold on to that bar just above your head.

Can I drop my arms for a minute? I’m having a hard time catching my breath.

Sure, take your time.

Um, I’m not having a heart attack, am I?

Not that I can tell.

Okay. Great, thanks. In … out … in … out …

She restuck the monitor stickers all over my chest and upper arms, attached the wires that led from the palm-sized monitor back to the stickers, and placed the little monitor into the left breast pocket of my mint-green hospital gown. Then she wheeled me back to my nook.

Michael was sitting on the bed, scanning his phone. Elizabeth is in the waiting room with takeout food. Mexican. Want some? Want to see her?

I immediately welcomed the distraction from whatever medical request was coming next. Michael and I had been planning on having dinner with our friend that night. At some point, he had texted her about the bizarre and unexpected circumstances, and instead of heading home with takeout, she had brought it to us.

Sounds great.

Elizabeth came into my nook with a quesadilla and had no idea what to do other than crack jokes and scout the doctor population for potential husbands. She was a perfect distraction.

The attending came back in. Third request: Because of the shadow we saw on your X-ray, we want to give you a CT scan to take a closer look.

Jokes stopped. Michael stared at the doctor. Deflated and scared, I didn’t have any more defiant questions in me.

This time, they didn’t transfer me to a wheelchair; they wheeled me out from the nook, right on the gurney. In the CT scan room, they didn’t ask me to move from one gurney to the bed-like part of the machine. Instead, two larger men gripped the sheet I was sitting on and transferred me.

The manhandling offended the part of me that has always had a