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 

Solitude and Connection

bikecourse1

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.

There Are No Words

Picture Credit (John Moore/Getty Images)

“…if we forget, we are guilty, we are accomplices.

“we must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Sometimes we must interfere.”

“When human lives are endangered, when human dignity is in jeopardy, national borders and sensitivities become irrelevant. Wherever men or women are persecuted because of their race, religion, or political views, that place must- at that moment- become the center of the universe.”  

Elie Wiesel 

Over the last few weeks, I read the news. I saw the pictures. I agreed with the outrage expressed in op-ed’s, evening news and twitter feeds. I shared and voiced my thoughts and opinions on the heinous actions of my government, separating in traumatic fashion children from their parents. My thinking brain has been shocked, horrified and outraged and did not have to stretch far to appreciate the parallels to the Japanese internment camps.

But my heart remained protected, wrapped up and insulated using the same tools I use to manage the emotional burden of caring for the critically ill.

And then I heard the tapes from Pro Publica.

I can only imagine the trauma that those children and their parents are enduring. I’m sure it falls far short from reality.  Although I cannot draw a direct comparison,  I do know how I felt when I was separated from my child in a way I never hoped to be.

I ached in a way I had never ached before. The weight of worry in every breath. Fear of the unknown fueled racing thoughts. My vision blurry and tired from holding back tears. My hand constantly drawn to my chest near my heart, pulled by a force from my core. A place I have felt only a few times before. This place inside, beneath skin and bone, ached with such weight and depth that it often forced me to the floor in attempt to ride out the waves of pain rolling through me.

I was overwhelmed and felt helpless. Yet I knew where my child was and who they were with. I knew those people cared.

Now, imagine you’re five years old in a foreign country with a foreign language. Cold concrete floors partitioned by chain link fences all around. No parent to squeeze hard and cling to. No family member to hug and hold, to feel their strength and resolve as an answer to your overwhelming fear. Only uniformed strangers with weapons at their side or tin foil blankets to turn to for any potential warmth.

There is no insulation from their cries. And there shouldn’t be. If you have not heard the tape, I ask you to listen.

Immoral. Unconscionable. Heartbreaking. Traumatic. Terrorizing. Those words, as strong as they are,  are insufficient to describe this current horror. There has already been too much rhetoric and not enough action. So I am going to do what I can do.

I am writing. I am donating. I am calling. I will vote in September and will help as many others in my community and neighboring states to do the same.

There are plenty of organizations that need your help. There is a need for lawyers, translators and donations.  Here is a link to a website at SLATE written by Dahlia Lithwick and Margo Schlanger. They are continuously updating the page with places that are helping in this battle.

Not much more to write. It’s time for me and my family to act. I’m asking you to act as well and share what you are doing. I’ll be sharing here over the next few days what my family chooses to do.

Together, we can be better than this.

 

 

 

 

 

 

How Do You Know When Someone Is Broken?

How do you know when someone is broken? When their spirit is fractured? When their sense of self no longer aligns with what once was. When you feel as if you have woken up in a foreign land, but that sense of displacement is coming from you, not your surroundings.

In television shows and movies, that moment for a doctor is obvious. The scene in which a physician cries in the stairwell, knees bent, head hanging dejectedly. A downward spiral into drugs and alcohol that leads to a near-miss in surgery. Or a final, explosive ranting monologue, that alienates the doctor in front of patients and peers. They have snapped. They have broken. At least until the next scene or episode.

Real life rarely follows a Hollywood script.

Read more