After determining that there were plenty of people to continue my
bedside vigil, all agreed that the nursing staff would probably be
delighted to have one less person in my room.
Jean went back to our home, packed her bags, and drove home to
Delaware that afternoon. By leaving, she gave the first real outward
expression to an emotion the whole family was starting to feel:
powerlessness. There are few experiences more frustrating than seeing a
loved one in a comatose state. You want to help, but you can’t. You want
the person to open his or her eyes, but they don’t. Families of coma
patients often resort to opening the patient’s eyes themselves. It’s a way
of forcing the issue—of ordering the patient to wake up. Of course it
doesn’t work, and it can also further damage morale. Patients in deep
coma lose the coordination of their eyes and pupils. Open the lids of a
deep coma patient, and you’re likely to find one eye pointing in one
direction, the other in the opposite. It’s an unnerving sight, and it added
further to Holley’s pain several times that week when she pried my
eyelids open and saw, in essence, the askew eyeballs of a corpse.
With Jean gone, things really started to fray. Phyllis now began to
exhibit a behavior I’d also seen countless times among patients’ family
members in my own practice. She started to become frustrated with my
doctors.
“Why aren’t they giving us more information?” she asked Betsy,
outraged. “I swear, if Eben were here, he would tell us what’s really
going on.”
The fact was that my doctors were doing absolutely everything they
could do for me. Phyllis, of course, knew this. But the pain and
frustration of the situation were simply wearing away at my loved ones.
On Tuesday, Holley had called Dr. Jay Loeffler, my former partner in
developing the stereotactic radiosurgery program at the Brigham &
Women’s Hospital in Boston. Jay was then the chairman of radiation
oncology at Massachusetts General Hospital, and Holley figured he’d be
in as good a position as anyone to give her some answers.
As Holley described my situation, Jay assumed she must have been
getting the details of my case wrong. What she was describing to him
john hannent
(John Hannent)
#1