As an oncologist and palliative care specialist, Larry Cripe treats critically ill patients. Two years ago, he found himself on the other side of the healthcare system after his college-aged daughter suffered a 30-foot fall. In this series of essays, Dr. Cripe shares what he learned about how better to communicate with the critically ill and their families, and how to move forward in the face of an uncertain future.
Millicent lies quietly in her hospital bed. My wife, Mimi, and I are next to her in the neurosurgical critical care unit. Mimi is trying to nap, while I sit on a wooden folding chair on the other side of the bed. “Open your eyes Millicent,” I whisper sharply, “Squeeze my hand. I love you.” She doesn’t respond. I say “I love you” but I mean “I am sorry.” I don't know what will happen or how to help. I do not say it'll be alright. I am discouraged.
For several hours after I arrived at the hospital, Millicent had been thrashing in her bed. In the past thirty minutes, however, the moaning and flailing against the restraints has subsided. Her left arm, which had lain motionless at her side most of the day, has moved once or twice. She appeared to be resting comfortably. I was encouraged.
But the nurse's brisk but kind matter-of-factness has been replaced by a sense of urgency. She asks me: Had Millicent really moved her left arm? Had she squeezed my hand? The nurse rubs Millicent’s sternum hard with her knuckle; this is no time to be gentle. The nurse knows what I don’t know. I will learn later that the concern was Millicent’s quiet was a sign of bleeding or swelling in her injured brain.
The nurse calls her supervisor and then the physician on duty. They whisper commands to Millicent.
Her eyes may have opened. “Millicent, I say, look at me.” I am not encouraged.
Now, Mimi is awake. We wait for someone to return. I begin to think more like the doctor I am. I review what I saw, dismissing the things I may have imagined. She may be no better and the nurse’s long absence suggests she is worse. I am frightened. I struggle to remind myself it is “one step at a time.”
But that is not true. The phrase “one step at a time” is misleading. It makes it too easy to believe the passage of time is all that matters; that recovery only demands putting in the hours, days, months, or years. Wait long enough and things will be better.
I recall the conversation I had with my brother-in-law Jerry earlier today while I drove to DC from Indianapolis. Remember, he told me as he said goodbye, it’s like a knotted string.
I didn’t understand then what he meant. I understand now. As I sit with my lovely, intelligent and critically injured daughter, I realize waiting is like holding a clump of knotted string in my hand. The uncertainty of what will happen is crushing. There is a desire to do something, anything. I fight to remain patient, to believe there is nothing else that should be done. I know if I pull on the clump of knotted string too carelessly a loop may straighten - but another may close on itself and form a new knot, a different knot, an unforeseen knot.
I prepare myself for the unexpected, the complications that seemingly come out of nowhere. I then surrender myself to knowing I cannot prepare. I can only accept that there will be other knots.
I fight the belief that there will be a point in time we will know that things will turn out alright. The future is a clump of knotted string. I may imagine an orderly ball of string that will unroll evenly, uneventfully, but there will always be knots. There may come a point when the question is not how to untie the knot but how to move beyond it.
Almost two years later Millicent has recovered much of what we feared she had lost. She is back in college. There have been many moments of uncertainty, but she continues to improve. I often catch myself thinking “one step at a time.” But that is not true and it was never true. It is not about what will happen. It is about preparing for whatever happens. And then accepting there is never enough preparation for the unseen knot.
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Larry Cripe, MD is a Hematologist and Oncologist Specializing in Palliative Care at Indiana University Hospital in Indianapolis, and a contributor to Sound Medicine.
