Guest Post: Control

It is my pleasure to introduce to the readers of Balance, Dr. Rebecca MacDonell-Yilmaz. Becky is a pediatrician out on the East coast who has not only just completed a fellowship in hospice and palliative care medicine, but has just embarked on her third board certification, this time in pediatric hematology and oncology. We connected through social media and over shared themes in our writing. I have read many of her posts on her blog The Growth Curve and wanted to share her work with all of you. I am honored that Becky has offered to post a piece she has written and publish it first on Balance. I could spend some time describing to you all how her story resonates with me, but instead I will let the beauty of her writing speak for itself.  You can follow her on her blog or via Twitter @BeckyMacYil 

Control

By Rebecca MacDonell-Yilmaz

In the afternoon I’m asked to attend an urgent family meeting. I press the resident who has consulted me for details – a middle-aged woman with ailing heart and lungs – and scour the chart to fill in the rest. When she came into the hospital, they asked, inelegantly, “If your heart stops, do you want us to do everything or nothing?” and she chose everything. Never mind that her organs will fail soon, that putting a breathing tube down her throat and hooking her up to a machine is unlikely to lead to any sort of improvement and she will eventually die with the tube in her throat or when her family members make the decision to remove it. She’s deteriorating, and the prospect of intubation is becoming more and more real. Yet she seems to grow less and less sure of what she wants.

I enter the room and heavy conversation is already underway. The resident is explaining that no, she wouldn’t feel pain with the tube because she wouldn’t be awake. But we would also ensure that she wouldn’t feel pain if she chose to forego the tube, to “die a natural death,” as we put it when trying to convey to patients that even our most heroic-appearing interventions – in fact, especially those – are unlikely to bring them back.

She says that she doesn’t want the tube. “I’m tired.” We repeat back to her what we understand her choice to be; she confirms. Her son arrives. He is large – in habitus, tone, voice. He starts yelling immediately. This is the third time (fingers held up for emphasis) that he has been called in to discuss this. And she keeps giving the same answer every time. She wants the tube. She should get the tube.

Two days ago, though, she said she didn’t want it. She decided on comfort only, no more treating, no more fighting. Home with hospice and hopes for a peaceful end. Then he visited and she wanted the tube again, or said she did. And now this conversation that has begun ripping apart the moment he barreled into the room.

We don’t know that she won’t recover, he says – no one can say that for sure. I can say it with high likelihood, I say, with medical experience and knowledge. But anything short of certainty holds no clout. In fact, he points out, we must be asking these questions repeatedly because we don’t like the answers we get. From this point forward, he notes, waving his phone,  he is recording our conversation.

The thing is, if she wants the tube, I want her to have it. It’s not what I would choose, or what I would wish for her – I know what that looks like, that ICU stay, that death. But it’s not my choice to make, it is hers. And whatever she chooses, I want to honor it. But I want it to be truly hers.

More yelling. He knows she’s sick, knows she might not get out of here. But it’s her right to have the tube if she wants it. (And her right, I add – if I can finish, sir – to change her mind.) He doesn’t disagree with this last but wants us to stop asking; she’s tired. We all are. I thank everyone for their time.

Back in my office, it’s dark. I make tea, sigh, stretch, and sit to document my work from the day, my work listening, speaking, trying to hear and to help others be heard.

My pager alarms. She has changed her mind, the resident reports; the whole family has. She is tired. She does not want the tube. She wants a natural death, when death comes. This time they all agree.

On the drive home, with little warning, I begin to scream. It rips up my throat, tearing at my vocal cords. The silence afterwards reverberates, hums, and my muscles relax. I inhale and scream again, the deep breath before it like a silent meditation, the eruption a vehement release. Next comes more tearing. And again the relief.

*                      *                      *

I’m late getting home. My boys need to eat – the youngest to nurse, or to spit pureed foods at me; the oldest demanding waffles and syrup. My husband is on a conference call already so can I please distract them, feed, them, try to keep their voices down?

Attempting to head off the toddler’s impatience, I request his help: can he pull open the frozen packaging? Can he put the waffles on the pan? No, don’t touch the oven – for this part, please just watch.

I’m feeling accomplished with waffles ready, baby happy in highchair, toddler climbing hungrily into his seat. The special fork (the one with rainbow stripes) is ready, syrup is on hand, the prognosis for the evening favorable. I pour generous pools of syrup, slice the waffles into bite-sized pieces, and sink into my seat.

“Move waffles,” my toddler says. Move them? Move them where? “Move waffles.” I don’t understand. Show me; help me; can’t you do it?

The fork is suddenly waving in the air, cutting frustrated arcs. “MOVE! WAFFLES!” I hear the tears welling, the wail erupting, as arms and legs start to fly. Baby is whining, upset at the commotion, and also wanting more puree. The conference call is only a room away and voices continue to rise.

“This is not how we act.” I am seething, though I don’t want to be. I pick him up, move us into the next room where there is space to explode and calm down. I know it’s not the waffles. It’s the communication, the struggle to make his needs and wants known with language that has only just begun to blossom. It’s the control, the need to exert any scrap of ownership and direction over his life. And he’s tired. I’m home late, dinner took too long to even start, his brother needs me as well. And he needs food, sleep, reassurance.

Limbs fly through the air, crashing again and again onto the carpet. He yells and yells, face red, cries lashing out at us all. I sigh, grab the baby from the highchair and pull him onto my lap in the living room, latching him to my breast. It consoles him and he eats hungrily, fussing only when I reach away to pull his brother, who is now simmering, whimpering, to my side. I feel the tension seep out of him as I nestle him close, the molecules of my being reaching out to soak up his unhappiness. The cries die down: his, his brother’s, my own. The three of us exhale as one.

 

Rebecca MacDonnel-Yilmaz can be followed at: The Growth Curve and @BeckyMacYil 

From Flowers to Dostoyevsky and the Road In-between

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I am sitting in the parking lot, waiting for the local bookstore, The Book Bin, to open. I am here because of a flower. And a pear tree turned maple. And a sense of time and space. And the writer Dostoyevsky.

Sipping my morning coffee, with the Jeep’s soft top down, I feel the heat and humidity of the day gaining momentum. I have ten minutes to kill, but there is no rush. I am in no hurry.

I am not a particular admirer of flowers or plants, nor fond of gardening. You will find no green in my thumb. I struggle to tell the difference between tulips and roses or what qualifies as a annual versus a perennial. Becky is both president and vice-president of landscaping and curb appeal for our home. But every year, after Chicago thaws out from another nasty winter, there is one pink plant I notice from July to the frost.

The routine is one I have done a thousand times. A long day of work followed by a quick drive home. I turn into my driveway, stopping short of the messy garage. I grab my evening Starbucks and step out of the car, making a bee-line for the front door. Just to the left of the brick paver walkway, pink flowers bloom on the tall arching hibiscus plant. Ten year ago, Madison and Maya won an Earth day contest resulting in a hibiscus plant in the front yard and a Pear tree in the back. Now, every time I see the pink flowers, a Pavlovian response follows. See hibiscus; think of Madison. The pink flowers stand out as the summer days get longer. But the reflexive thought is usually fleeting. I have a narrow two-hour window to play catch-up with the family, eat some food, and take care of some odds and ends before getting ready for evening water polo practice.

But this has been a year of change. More weeks off of work than on. Days slower, pressure lower. Options greater. Headspace clearer.

Yesterday, I got out of the car and looked just to the left of the brick paver walkway; pink flowers bloom on the tall arching Hibiscus plant.

I paused.

I deviated from pattern and routine. I literally stepped off the brick pavers and walked through the dirt. I kneeled, and for the first time in ten years, I looked. Not rushed and fatigued, but with the unassuming eyes of a child.

Was it the way the day’s light caught the blooming flower? Or its movement, as it swayed back and forth in the afternoon breeze? I stopped. I looked. Differently. Not with an expectation of confirming what I knew to be true. Not reflexive with a programmed response. But with eyes and mind open in a way they often are not.

Not a simple single color, but pink and dynamic, with pattern and texture. Not just petals, but a flower with a complex architecture that I forgot existed. I am mesmerized. I focus. I take pictures, trying to capture or preserve what my eyes see. There literally is a world of things present that I have not noticed previously, all backlit by light emanating from small slits in the petals left open at the base.

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I have written, in the abstract, about increased time and space since going part-time. But it’s concrete and tangible right here in this flower. My mind is unencumbered by the weight of a twelve-hour work day or a week’s accumulation of fatigue. There is no pressure of a two-hour window closing in on me as I stop to smell the roses; or in this case, the Hibiscus. I walk around to the backyard. A few years ago, we identified the pear tree correctly as a maple. I look up at what was once a six-foot tree which, to my surprise, towers overs me by at least thirty feet. Thick branches, once thin and pliable, have weathered quite a few storms over the years. Despite viewing the tree daily through the kitchen window, I have missed this transformation.

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Patterns and behaviors. Expectations and assumptions. Tools often necessary to get thru challenging days. They consume less energy, tapping less into one’s reserve, to operate more on auto-pilot or cruise control. But that path foreword is limited and constricted. One where the hibiscus remains just a pretty pink flower, and the maple six feet tall.

Time and space. Look left and right. Stop assuming. Be more curious, and have fewer expectations. Break patterns and rethink behaviors.

I didn’t read Crime and Punishment in high school or college. Over the years, when I came across references to the book and its protagonist Raskolnikov, I made mental notes to buy and read the book, but never followed thru. Too little time. Never made it high enough on the to do list. In a few minutes that will change. I am waiting for Book Bin to open and I am going to buy that book.

Time and space. Break Patterns. Rethink behaviors.

Madison comes home soon to visit for a week. He’s about to move into his own apartment in Oregon. Maya’s about to start her senior year, with quite of few colleges on her mind. Becky is gearing up to offer tutoring services in a more formal fashion. We are a family with quite a bit of transformation ahead. But despite the potential and promise of the upcoming year, I am in no hurry to launch myself forward.

Days slower. Headspace clearer.

I drive away from the Book Bin, Crime and Punishment in hand. I am ready to read it. With more time and space. With more curiosity and fewer expectations. And with unassuming eyes and a mind wide open.

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Taking a Step Back to Move Forward

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This was first written and posted on Doximity’s Op-(M)ed and can be seen by clicking here... I will be writing monthly for them and hope to have a year-long discussion about the trials and travails of being part-time. Whether its enjoying more time with the kids, suffering through a bad Locums placement or learning to be a student all over again, I plan to share it all with all of you. For those that have been keeping up with a lot of my writing, a lot will be familiar. But I hope you enjoy the slightly different perspective.

Taking a Step Back to Move Forward…

“The simplest questions are the most profound.
Where were you born? Where is your home? Where are you going? What are you doing?
Think about these once in a while, and watch your answers change.”
— Richard Bach, Illusions

To an outsider, a hospital often feels like a chaotic place. Varied people flutter in and out of rooms, the color of their scrubs identifying nurse vs. patient care tech vs therapist. Bulky portable X-ray machines compete for hallway space against more streamlined transport carts, shuttling patients to procedures and tests and back again. All this against a soundtrack of monitor alarms in-between intermittent overhead announcements.

For those who work inside the hospital walls, there is a structure and pattern beneath this apparently random Brownian motion. Environmental services with their Zamboni-like machines clean the floors at 4 AM. Phlebotomist follow soon after to draw 5 AM labs. Portable X-rays make their way into the rooms about 5:30 AM. Resident handoffs start at six before the nurses have their shift change at seven. Multidisciplinary rounds tentatively start at eight. Notes finished by twelve so I can get to my first office patient by one in the afternoon.

Patients add improvisation, going off-script to inject their own episodes of distress, instability and crisis. But every day, in each hospital, there is a unique structure and rhythm to the day to anchor and build off of, to manage and cope with the unpredictable nature of the ICU. Almost every day for the last twenty years, I have relied on and used these routines and patterns to navigate and manage my day.

A year ago, everything changed.

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Solitude and Connection

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Two friends (younger than me by more than two decades) are training for the Ironman and I decided to join them for their first of two 40-mile loops. I had already decided to defer my own race entry to next year due to a combination of aches and pains, along with maintaining life-balance, which led to my bike lying dormant in the basement. About four weeks ago, I finally brushed off two years of dust. The few rides done between then and now felt like brief tentative coffee dates after a prolonged break up. So, I impulsively jumped at the chance to join these guys and recapture a bit of pride and youth.

Currently I feel neither proud nor youthful. But I am definitely feeling my age and rather stupid.

First, I spent all of last week barely able to move with a locked-up neck and back. Last weekend’s combination of ICU call and a Midwest water polo tournament did not treat me well. High doses of Motrin and a session with a chiropractor got me the go-ahead to start exercising again. But I might have neglected to mention I had the hills of Madison in mind for this weekend.

Second, I have been on my bike only three times this summer. The longest ride was two hours and covered thirty-two FLAT Illinois miles. Not hilly Wisconsin ones. This was like going from a lazy six-mile run on level ground to a hilly half marathon.

Third, if I was going to do this, I should have ridden at my currently slow own pace. These guys have been training all summer. Their youth, combined with the handicap of my age, makes their current speed out of my league.

Nevertheless, after waking up at four AM and driving to Madison under the backdrop of the morning sunrise, I am now in a world of hurt. Having been dropped relatively quickly by my faster friends, I find myself alone with my thoughts. My wheels spin over the rolling hills; mid-summer length corn lies adjacent to the road on either side. Soon, the corn soon gives way to an open field and a gentle breeze, a nice relief to the morning’s rapidly rising temps. I feel sweat from my brow trickle down symmetrical tracks on the sides of my face, reuniting at the tip of my chin before gravity finally pulls the salty drops from my skin. The wind drones in my ears as it flows through my helmet’s vents. The drive train of the bike generates a soft and subtle background noise with a pattern and cadence matched by my pedaling. Discomfort and stupidity no longer my focus, I am freed to look inward and reflect; an infrequent opportunity these past two years in the absence of long runs and rides.

Thoughts have been fluttering around in my head for a while. Why do I continue to create pain and discomfort through bikes rides and long runs? Why put my body and face between a water polo ball and the goal? Why am I going back to school? What do I want to achieve? In the relative solitude on my bike in the middle of Wisconsin farmland, I can stay and linger with these thoughts for a bit and connect some dots.

My daughter moves like me. She has never been able to sit still. She has learned over the years to channel that boundless energy into dance. Finding within the movements her passion and focus. My own need to swim, bike and run parallels her need for constant motion; my comfort in the pool surrounded by teammates mirrors her happy place in the dance studio. Her desire to make dance part of her life in college reminds me of myself at seventeen using water polo to connect and help find my way as a freshman.

My son is struggling with his future like me. He is in the process of figuring out what he wants to do moving forward in his life. What does he want that to look like and how will he actually make that happen? He reminds me not only of myself at the age of twenty-one, lost and scared about an uncertain future. But also myself now, at the age of forty-eight, asking similar questions all over again. I am probably not the only family member lying awake at night wrestling with the vast openness of the unknown. We both have our own paths of growth and discovery that we are navigating and working through.

The landscape keeps changing. There is a dairy farm now on my right and a field of alfalfa to my left. The bike route this time of year is usually quite busy and for most of the ride there was no shortage of riders around me. But currently I am alone, except for some Holstein cows huddled together, relatively motionless but for their tales whipping through the air. My bicycle and I start to battle a mild but increasingly uphill grade. My breathing turns more forceful and labored, moving the late morning humid air into and out of my lungs. The grade again increases, forcing me to grab the brake hoods, increasing my leverage on the pedals. I have some rough miles ahead of me, both on my bike and off. But instead of feeling stupid, I am filled with gratefulness and connection. To an observer, I am riding slowly up a hill in relative solitude. But in reality, I am not alone. Madison and Maya are right by my side.