Alice

Lying stuck in my hospital bed during the latest of many hospital stays, I reflected on the drastic turns and changes my life had taken.

For ten years I’d enjoyed a busy, fulfilling life as a pediatrician, educator and writer. Then, in the summer of 2020, my life had lurched from 100 miles per hour to a full stop. I’d become progressively weaker and easily grew winded when walking. Previously, I’d been diagnosed with Sjögren-related postural orthostatic tachycardia syndrome, which has similar symptoms, but this felt different.

The new symptoms were debilitating: I found it hard to breathe when lying down, and while walking down the hall at work one day, I had to stop and lean against the wall, open-mouthed and gasping. My condition worsened until I couldn’t speak full sentences. In one severe episode, I also suffered from apnea and kept passing out.

A series of lengthy, frustrating hospital stays shed no light on the problem, and I realized that I could no longer keep working. Finally my optometrist suggested that I might have myasthenia gravis, a chronic autoimmune disease that causes muscle weakness and fatigue. This diagnosis turned out to be spot-on; but by that point I was too debilitated to recover. It hit hard to receive an insurance letter labelling me “totally and permanently disabled.”

Now I was back in the hospital yet again—enduring my sixth lonely, isolated day here after being admitted for a blood infection.

This hospital stay felt more challenging and depressing than prior ones. I couldn’t leave my room unless someone pushed me in a wheelchair—a rare occurrence—and the care I’d received was rough-edged: I felt harmed more than helped. My head was ready to explode from the stress and the IV pump’s beep, beep, beep, and my faith in the Hippocratic ideal was crumbling.

Beneath it all, I was grieving the loss of my cherished identity and role as a doctor.

Once I found fulfillment in a calling of helping others, I thought. Now I can scarcely take care of myself without assistance. I felt hungry to do something meaningful—to help others again, rather than just being helped.

At this point, a roommate arrived: Alice.

Over the next twenty-four hours, I witnessed her death—which marked yet another turning point in my own life path.

I first heard Alice as she was being wheeled into our room. She was alone, with no relatives in attendance. Breathing in big, wet, gurgling gulps, she moaned whenever the caregivers on her medical team touched her.

I know what suffocating feels like, due to my own myasthenia exacerbations, and I felt eager to do something to give this difficult time meaning. I didn’t know Alice’s medical problems or treatment plan, but I knew that I could help her care team by sharing my clinical observations about her comfort levels, so I took off my noise-blocking headphones and tuned into Alice’s gurgling breaths.

After one treatment session, I told them, “Compared to lunchtime, she’s having a much easier time breathing.”

Later that day, I mentioned, “She now moans only when she’s being shifted on the bed.”

Finally I told them that she was breathing comfortably: “She doesn’t sound distressed, even when being moved.”

Alice hadn’t said a word since her arrival; now her silence seemed more peaceful.

On a trip to the bathroom, I finally saw her—lying on her bed with only her very wrinkled face, hands and feet sticking out. Her gnarled feet, with their thick, dry skin, resembled tree roots; she hadn’t walked in a long time. She held her hands as if in prayer, making knitting movements and twirling a ring round and round one bony finger.

Seeing her, I felt a surge of connection; I too couldn’t walk and spent most of my time in bed.

As I drifted to sleep that night, the room’s only sound was the beep, beep, beep of Alice’s and my IV pumps.

Then, in the hazy pre-dawn, Alice bellowed a name:

“Heather!”

My name!

“I want to visit!”

I jolted straight up.

“Maria, it is so good to see you,” she continued. “I love you.” She went on to greet John, Ellen and other loved ones.

Through the thin curtain between our beds, I listened, rapt and curious, as Alice spent time with her invisible kin. Her warm voice conveyed the impression of arms outstretched to hug; I felt as if a joyful family reunion were taking place right next to my bed. Inwardly, I felt my perspective shift from that of a clinical observer to that of a fellow traveler.

When dawn came, Alice quieted. I never heard her say another word.

After my night with Alice, I had the sense that my being here during this disastrous week, in this particular hospital and in this specific room, had not been for my own care: It had been to help Alice, to share her journey with her.

I couldn’t help comparing her calm, peaceful passing with the first death I’d ever seen as a medical student. The patient, a teenager shot in the chest, had received chest compressions en route to the ER; the trauma surgeon had split open his chest, pulled his rib cage apart and gripped his motionless heart—to no avail.

Afterwards, the surgeon had called me over to peer between the metal rib spreaders into the chest cavity. The patient was no longer a boy but a cadaver, a teaching exhibit. And there was no peace or calm in that trauma bay—no sense of his humanity or spirit.

Now, lying in my hospital bed after Alice’s passing, I reflected on how powerfully the urge to “do something” swirls around death in the hospital. Some patients die nonetheless—often, in the hospital, with caregivers’ hands pumping their chests or even gripping their warm hearts. This can lead clinicians to see death as a personal failure—and I think the resulting shame and self-blame drives some to try even harder to “do something, do everything” the next time.

My time with Alice taught me to put down the physicians’ toolbox and, as a fellow human traveler, to help ease her final hours of life by witnessing and sharing that part of her journey.

Sometimes, doing nothing is doing everything.