An Interview

Madeline Eckenrode

Reading her chart, I thought, wow, her life must be so circumscribed by her medical problems. A short list: COPD, CKD, diabetes, limited mobility, hypertension, obesity. Skimming over that laundry list of chronic conditions, she started to be just another one of those patients on board questions who has “diabetes, hypertension, etc.” According to the most recent note in Epic, she’d been diagnosed with calciphylaxis, a chronic, progressive, and universally fatal condition involving the hardening of blood vessels.

Beginning the interview with the usual open-ended question, I asked Ms. Hayes how she had been feeling. That invitation opened up a very emotional series of stories about how her new condition was haunting her, about how she was reading about the incurable nature of calciphylaxis and felt like each day could be her last. Her belief that death was imminent led her to feel hopeless, and she told us that she had been crying and shying away from activities she had once embraced. She’d even been saying goodbye to people she knew she wasn’t going to see over the next few months. While I had suspected her life to be narrow, it turned out to be full of rich, complex relationships which she nurtured carefully (with family members, her dialysis nurses, her TransAid bus driver, her friends – former teachers who she kept up with via weekly lunches). She had been a music and drama teacher, and the cadence of her voice, her expressivity, her choice of musical-sounding words, and her careful syntax were all clues to her former career.

To her, the fact that she was still living and enjoying life despite her medical problems was a miracle. All of her hospitalizations and treatments were instruments of the miraculous, not the burdens I imagined them to be. Even her thrice-weekly dialysis was something to be grateful for, something that kept her alive and able to care for her young grandchildren in the afternoons. That, to me, was amazing. As she was saying this, I kept thinking about how doctors talk about “quality of life.” I had thought to myself: how could anyone on dialysis have good quality of life? Failing to realize, of course, that quality of life is incredibly subjective. No one can know the subjective experience of another person.

After the interview, we moved on to her physical examination. What a ravaged body, I couldn’t help but thinking. But to her, it’s the body that has survived so much, that allows her to take care of her grandchildren, to sing, to bake holiday treats. The hard bumps are like nothing I’ve seen before – internal disease processes, hardening arteries, made very obvious externally. That’s the thing, isn’t it? We don’t want to think about our physical selves, most of the time – but if we can’t forget, if we can’t shrug off the lingering pain, our bodies become burdens instead of instruments. At her core, I think this is one of her deepest fears – that her spirit, so alive, so vibrant, will be silenced by the decline of her corporeal self. And that frightens me, too – the people I have seen die have mostly been those who have not been able to express themselves –  a neonate, men with sepsis whose minds have wandered to some other place, unknown to us. But she sees and feels her decline and does not want the end, hasn’t come to accept death, yet.

When acceptance of death surrounds the event, it is much easier to allow the forces beyond our control to march forward, for disease to slip into our bodies like an unwanted visitor and begin to shut off the lights. She has too much to do before she dies. Her young grandchildren need to grow up, she needs to finish the quilt that’s sitting on the chair, she has to watch her favorite musicals a last time. Those thoughts overwhelm her.

I hate when this happens, when we have to explain to people that medicine is limited and there’s so much we don’t know. But we do it, because there’s nothing else to do.  At the end of the day, we don’t know the exact pathophysiology of the condition that is causing her excruciating pain. We palliate, we partially explain, we apologize for how little we know, how little we can do. That’s the plan. Discover an answer to a problem that has no real solution. The teacher in her rebels at that idea.

The interview closed the only way it could – “I’m sorry.”

 


Madeline Eckenrode

​Madeline Eckenrode
Year in Medical School:
MS3
Grew up: Lancaster, PA
College Attended: Wake Forest University
Favorite Quotation:
"What we hope ever to do with ease, we must learn first to do with diligence." 
- Samuel Johnson


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Last Updated: 03-06-2014
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