Days before she died
my mother stood in line,
took a picture for a passport—
For months, as I’ve visited Evan as his hospice social worker, he’s been praying to die. In his early nineties, he has been dealing with colorectal cancer for more than four years, and he’s flat tired out. As he sees it, the long days of illness have turned his life into a tedious, meaningless dirge with nothing to look forward to other than its end. He’s done, finished. He often talks about killing himself.
On this visit, though, his depression seems to have lifted. He’s engaged and upbeat–and this sudden about-face arouses my suspicions: Has he decided to do it? Is he planning a way out?
After my husband rolled out of bed and onto the floor–a loud thunk at 3:00 a.m.–time moved quickly. Paramedics. Hospital. Unfolding diagnosis: Looks like a stroke. Definitely a stroke. Massive stroke. Decision: No dooming him to a future without movement or speech, without the ability to appreciate sci-fi and Mozart and spring.
Then the waiting began. His brain took its sweet time to ease into the complete and irreversible loss of function necessary for organ donation. In truth it was only days, but each one felt endless. I sat alone. I sat with family and friends. I walked the hospital hallways, trying to create to-do lists through my gray cloud of trauma. Call lawyer. Pick up healthcare directive. Change life plans. I sat some more. Waiting became a way station, a stopping off point where I sat and watched for the arrival of a future I did not want.
Eventually, the spark that was him officially died. On that final day, I shooed away the visitors, closed the curtains in his ICU room and pulled out the CD player I brought from home. We listened to music from his exquisite collection. We talked. (Okay, I talked, but I like to think that, …
I’ve spent my whole life waiting. Waiting to join my sisters in boarding school. Then, once I was in boarding school, waiting for the Christmas and summer holidays when we could go home. And all through high school, waiting to go to university, which, in my opinion, would be much better.
When I got to university, I was in a six-year program, so graduation seemed very far off—so I studied and waited and studied and waited.
A few months ago my friend Phil gave me a newspaper clipping from the Sunday New York Times on body-focused repetitive behaviors, from nail-biting to hair-pulling to skin picking. I know he gave it to me because he wanted to help me with my own problem. He’s heard me express my frustration about it at the support group for faculty in our family-medicine residency.
“Happy Birthday!” Those were the first words that met my ear today. They came cautiously, spoken almost like a question. A question that was trying to apologize for its very existence. It did not make sense to me then, and it circles my mind now. I was standing then. I find myself sitting now.
I had walked in the building and entered the elevator an hour earlier. “What floor?” I asked the other occupant. “3, please,” came the reply. I was going to 4. They were never going to 4.
“Have you been tested for COVID-19 recently?” the gatekeeper asked. “Yes. It was positive.” Eyebrows arch. “It is negative now.”
I approached the front desk. The forms they gave me asked me why I was here. I did not know the answer. Rather, I could not comprehend it. “Will you please take a seat?” Gladly. I am exhausted. I thought that was supposed to come after.
Time passes. Happy birthday. Happy birthday. Happy birthday. Around and around the drain it goes.
“How did I get here?” I think to myself. “A car,” comes the sarcastic reply. No. “How did I wind up here?” I look out at the sea of …
January 8, 2016, was a day I shall never forget. I received the news that the issues I was experiencing with my right knee would require a total knee replacement. My primary care physician assured me not to worry: “Everyone has knee replacements.” And so began my period of waiting in darkness. It would last for more than four years.
The first of what would be six procedures was scheduled for two weeks later. Infection set in just four days after my surgery. Oral antibiotics gave me a sense of waiting in light. How wrong I was! Eight weeks of IV fluids were ordered.
Subsequent arthroscopic surgery removed scar tissue and a bone spur. But infection number two reared its ugly head. Lab tests revealed the infection had spread throughout my body, so the implant had to be removed while a spacer was placed in my leg. Darkness continued, as I remained dependent on others for the next three months. A second round of IV antibiotics led me to depression. Would the light never come?
Knee revision followed. as my leg was cut open for the third time. How many times could skin be cut and stapled? I experienced further …
Over more than half a century of delivering primary care, I was privileged to be present at moments of profound sorrow and unspeakable grief. Often, these moments came when communicating about a fatal prognosis during a house call after a death had occurred there—whether unexpected or expected, sudden or after a chronic illness.