There was absolutely no warning that it was a brain tumor. I had been having trouble
accessing words. Was it no big deal – a normal, if annoying, aspect of aging? Was it
Alzheimer’s? I was unconcerned. I was terrified.
I found reasons to put off seeing a neurologist. Finally, a good friend insisted I make an
appointment. I dutifully complied.
When I saw the neurologist, he didn’t seem particularly worried because I was having a
good day. I had good days and bad days. It was rather like bringing in a car to a
mechanic because there is a worrisome, strange noise, which then mysteriously
disappears as one is pulling into the shop.
He suggested I get an MRI. He said, “I don't expect it to reveal anything troublesome,
but let’s see what the results show and we’ll discuss it. That will be the next step in our
I scheduled the MRI, but I wasn’t concerned. When someone – or at least myself –
thinks of symptoms of a brain tumor, they think of headaches. They think of blacking
out. They think of a sudden change in eyesight. I didn't have any of those symptoms that
one might think of; so it never crossed my mind that I had a brain tumor.
After the MRI was completed, a rather solemn looking gentleman walked into the room
and said, “The radiologist needs to discuss the test results with you, please don’t leave.”
It sounded ominous, but perhaps I was overreacting.
I was not.
The tumor lit up like a Christmas tree on the MRI. Even to my unpracticed eye I could
tell it was relatively huge. “Almost always benign,” the radiologist said. Good. “Must
be immediately operated on.” Not so good.
The radiologist couldn’t understand how I was still walking around, why I didn’t have
more symptoms and, frankly, why I wasn’t already dead. Suddenly, in a split second, I
went from being basically okay, as far as I knew, to being in mortal danger.
I was told to go immediately to the St. Barnabas emergency room. The doctors were
adamant that I not drive; I was apparently a ticking time bomb. They would call an
ambulance. What?! Were they seriously insisting that I not drive the three miles to the
ER? Ridiculous! My need to control at least one aspect of what was happening to me
became paramount. I argued my right to drive and won a hollow victory as I marched to
the parking lot to retrieve my car.
Everything seemed unreal. I felt like Alice after she had fallen down the rabbit hole.
Before I left for the emergency room, I phoned my internist of twenty-five years to tell
him what I still couldn’t quite believe. He told me that he would take care of everything.
He recommended a “brilliant” neurosurgeon whom he said he would contact. Someone
from the surgical team would meet me at the ER. “Trust me,” he said. And I did.
As I drove to the emergency room, I wasn’t thinking of my impending surgery. It was
very dark and I have a terrible sense of direction. I remember thinking, “How the hell do
I get there?” Apparently, I had neglected to ask for directions. Eventually I did find my
way. I was seen right away and was immediately hospitalized.
I have no memory of my consultation with Dr. Otakar Hubschmann, my neurosurgeon.
These days, people omnivorously search the Internet for information about their medical
conditions. Not I. While ignorance, in my case, was certainly not bliss, it was apparently
necessary for I’m told I asked few questions – odd for someone who always wanted to
know everything about everything.
I had often been called “the death and dying lady.” Working with people who were
either facing death or were dealing with the death of a loved one was one of my
specialties in my practice. I was passionate about it, and I seemed to be good at what I
But I immediately realized that my experience counseling other people, when they were
facing their own mortality, did not necessarily help me. When I was a social work student
at Memorial Sloan-Kettering over forty years ago, Elizabeth Kübler-Ross's very well
known book about death and dying had just been published. Suddenly everyone was
interested in talking about death and the five stages Kübler-Ross described. Denial was
considered the most primitive, problematic stage – something to be overcome so one
could pass on to the other stages. But even as a student, knowing virtually nothing, I was
dimly aware that denial can serve a purpose. If you take the denial away without
something to replace it with, it can be very harmful. That certainly would have been the
case with me.
I was considered an “expert” in helping others to face their own mortality, but had no
clue how to face my own. How could this be? Did I not know by heart Kübler-Ross’s
five stages of death? Had I not been elected an associate by Columbia University’s
continuing seminar on death? Had I not published books and articles on the subject?
Oh, that. Forget about all that, for there was simply no time. No time to go through
Kübler-Ross’s five stages. No time to aspire to be noble or develop a greater
appreciation of life. No time at all. Soon I was being wheeled into the operating room.
I think what I was clinging to is that my doctor had told me that the neurosurgeon was a
brilliant, very accomplished man. I was now in his hands and I thought, “Whatever
happens, happens.” The bottom line was that there was no choice and I think that made it
easier in a funny kind of way.
It didn’t occur to me that I might die. I know how bizarre that sounds; but I remember
thinking, having this thought, that what was happening was not happening to me. I was
almost observing myself and I was thinking, “Oh, this is interesting; I really should take
notes because this is so interesting.” Maybe I would do an article about it sometime in
It never occurred to me that there might be no future. I don’t know why. I can’t explain
it. Of course, I understood on an intellectual level the seriousness of what I was facing;
but on an emotional level, obviously I couldn’t grasp it. I only found out afterwards that
my odds were not good. Not good at all.
The operation lasted more than six hours. Afterwards, my brain was severely swollen.
No one knew how I would emerge. Prayer groups prayed for me and the surgical team
watched and waited. In the end I did not die and I could move and speak. And I was still
I was transferred to the Kessler Institute for Rehabilitation. Everyone said Kessler was
“the” place to go and I was under the impression (I don’t know that anyone ever told me
that or encouraged that belief in any way) that I would have a full recovery, which I
subsequently have had. But at the time, they couldn’t predict what would happen. I just
knew I would be in good hands. Several of my patients had been at Kessler. I knew that
it was a very good place – very cutting edge. So I went from hearing about Kessler to
living that experience.
Three days after I arrived, I just didn’t feel right. Something was wrong. I remember
telling my physical therapist, “Something isn’t right.” I felt weird and she said, “Well,
weird how?” I said, “I can’t explain it.” There were no words; it was just a feeling.
My friend, Lois came to visit me that night and knew immediately that something was
wrong, something was different. She spoke to the nurse and the nurse said that she would
keep an eye on me.
Lois got a call the following morning. I had slipped into a coma in the middle of the
night and I had to be rushed back to the hospital for more surgery. I had developed a
blood clot in my brain.
It was tricky because I had signed a living will and Lois was designated as my surrogate.
The doctors could not say how I would emerge from the second surgery. I had been very
clear with Lois that if I could not be “me” I didn’t want to be saved. So she had to make
the really difficult decision about whether I should have the second surgery.
I have another friend who I had also named in my living will. She called him and they
both talked about it. She was not sure she had done the right thing because she could
only speculate, she told me after, “What’s Janice going to think if she emerges from this
and she’s totally paralyzed or a vegetable? She’s going to be royally pissed!”
She made the decision to have them operate because they said they thought there was a
good chance that they could correct the problem. But there were no guarantees.
The surgery was a success and the doctors marveled at my condition post-op. Soon I was
back at Kessler. I had a very weak right arm and I had to learn to use the arm again to
write, to feed myself, to do all those things. I’m a “righty,” so that was really hard. I
could do nothing with my left hand. That was always one of my biggest fears, that
something would happen to my right hand. I’m a writer who literally writes in longhand
and I wasn’t able to write.
But they are amazing at Kessler. It’s a cutting-edge place and whether I would have had
the same results as I did somewhere else, I don’t know. I stayed six weeks. I kept
begging them to let me stay. I saw the progress I was making and wanted to stay as long
Also, to top off a very dramatic time, there was a flood in my apartment because the roof
had literally caved in during the aftermath of Hurricane Sandy. So, they were doing
renovations. They were doing construction. They were doing painting. Because of those
circumstances, I was able to remain there longer.
When I was at Kessler, my total focus was on getting better. I just did not allow myself to
think of anything else but a full recovery. (I never once asked about the odds. I did not
want to know.) While I was there, the Newtown school shooting happened. I remember
being almost more affected by Newtown than by what happened to me. I remember
watching it on TV and sobbing. The physical therapist came into my room and said, “It’s
time for physical therapy.” I replied, "I can’t possibly go now. Have you heard what’s
on the news?" And he turned off the TV and said, quite sternly, “You’re going to
physical therapy today.” Let’s just say they don’t coddle you there.
The one negative memory I have about Kessler is when a woman on the staff came to the
gym where I was exercising and asked if I wanted to be a part of a special program that
helps people transition back to work. It’s actually a program for people who are thought
to be doing well.
The woman used the example of a talented painter whose fine motor coordination had
been seriously compromised after a stroke. I waited for her to tell me how the woman
was ultimately able to paint again. But, in fact, she told me the woman had come to
terms with her disability, and was able to derive satisfaction from different creative
Well, I was furious – beyond furious. I had never contemplated anything less than a
complete recovery and this woman, unbidden and unwanted, had pierced through my
denial. How dare she! How dare she make me confront the fact that I might not (after a
lot of hard work, of course) end up exactly as I had been before?
Was I not doing everything right, making every effort? Surely I could not end up like
that painter. It was, quite simply, unthinkable.
I gave the woman a withering look and told her I was not interested. She persisted – why
was I not interested? I turned and walked away, refusing to answer or even listen to what
she was saying. Baffled and well meaning, she followed me across the gym. What must
I do to get rid of her? Finally, I swung around and snarled that if she did not leave the
gym immediately I would call security. She clearly thought I was deranged, possibly
dangerous, and ran from the room.
Many people, of course, want and need their friends and family around them in a
situation like mine. But for me, that was actually the opposite of what I wanted. Frankly,
I didn’t want to have to deal with other people’s emotions and needs, and their attempts
to comfort me.
In truth, people, though usually well meaning and eager to help (up to a point), are
notoriously bad at knowing how to comfort other people even (or especially) the people
they love. They so often say the wrong things – common platitudes like:
“This will make you stronger in the end.”
I’d rather be weaker and not have to face this.
“God never gives us more than we can bear.”
So if I wasn’t able to bear this my wife would not have had to die?
“Your husband is in a better place.”
I’d rather have him here with me.
“There is a reason for everything.”
Tell me the reason my child had to die.
I had listened for years to people’s stories of the hurt caused by well-meaning but
ultimately insensitive remarks. In my experience, people rarely understand that their very
presence – sometimes just sitting in silence, holding someone’s hand or intently listening
without saying a word – can be profoundly healing. Sometimes there are just no “right”
words to say.
I had so often been the interpreter for my patients of other people’s motivations when
they fumbled in their attempts at comforting. Trying to analyze and dissect what other
people really meant when the words came out wrong, while at the same time validating
my patients’ hurt or angry feelings was a big part of what I did as a therapist. Was I now
supposed to do that for myself? The very thought was exhausting.
I was, in fact, appallingly selfish. My friend Lois, who always seemed to know what to
say (and not say), became my gatekeeper so to speak. She had to try to explain to
uncomprehending family and friends why I did not feel ready to see them. She also
called every one of my patients, most of whom were already dealing with issues of loss,
abandonment, facing death or had loved ones facing death. It became her role to tell
them that their therapist, who was supposed to help them with these very issues, was
herself now in jeopardy. I was dimly aware of the irony, but of course there was nothing
I could do. I imagined helping my patients to process their feelings when I returned to
work. It simply never occurred to me that I wouldn’t return.
Lois was with me virtually all the time when I had my surgery and then at Kessler. She
was essentially a gatekeeper who was charged with letting no one through the gate. For
someone whose instincts were to always be inclusive, it was difficult for her on many
levels. It meant, as well, that there was no one to relieve her. While I was blithely being
“positive,” and focusing on my recovery, Lois became responsible for all the logistics. It
was only later that I realized the toll that this had exacted upon her.
When I first arrived home from Kessler, I played the “brain tumor card” shamelessly. I
soon discovered that it could be very effective at getting what I wanted and being
forgiven for almost anything. “Oh the brain tumor” I would sigh, as my voice trailed off.
I was rather enjoying the extra benefits I was accruing.
However, that got old pretty quickly and my priorities began to change; something so
often described by my patients who had faced death. I had always been a perfectionist
with scant patience when things didn’t go as I thought they should. Now, any mistake,
inconvenience or disappointment paled in comparison to what I had been through (or
might have had to go through if the surgery had not gone well). I had by no means turned
into a Pollyanna, but I gradually noticed (and other people began to notice) that almost
nothing upset me anymore.
One of the things that I thought about a lot, especially after I realized that I would
recover, was, “Why me?” Why did I recover when others did not? It was basically the
opposite of when something bad happens and a person asks, “Why me?” I thought,
“Why was I spared?” Was it pre-destination? Was it God? Was it another force, a
higher power? I didn’t know. Was I spared for a reason? Was I meant to do something?
Was my work on earth not yet completed?
Then I received a Christmas card from a former patient of mine. I had become friendly
with him and his whole family because he was such a special person. Actually, the whole
family was very special.
He always sent a yearly Christmas card, recounting different family events during the
year. This year it had been delivered to the wrong office. By the time it got to me, it was
months late. I read it and it was very nice; it recounted all the wonderful things that had
happened during the year, written in David’s characteristically witty way. In the last
paragraph, he said, “And I’ve been diagnosed with pancreatic cancer.”
Actually, his surgery had taken place the day after my own surgery and, incredibly, we
were in the same hospital in the same ICU at the same time. I remember thinking, “This
can’t be a coincidence.” Of course, I immediately wrote back a note. I thought I might
be able to help him because of my own experience. I tried to make it meaningful. I
didn’t just want to say, “Get well soon.” So it was actually a letter contemplating why
such things happen and I started to think a lot about people like him or like myself who
are suddenly faced with their own mortality. (David’s story is recounted in the chapter,
“The Scientist Who Put His Faith in God.”)
I thought, “This could be a book project.” There are certainly a lot of books about people
facing their own mortality, but I also wanted to tell the stories of the doctors and surgeons
who are such a pivotal part of this drama. And that’s how this book came to be.