A “Death and Dying” Lady Confronts Death

(Article appeared in the May 9, 2013 edition of The Montclair Times)

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 working together.”

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 did.

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 the future.

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 me.

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 as possible.

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 outlets.

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.

Janice Cohn is a psychotherapist with offices in Montclair and Manhattan.
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