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Prologue and Chapter One
by Paul Berger & Stephanie Mensh
Prologue
I was 36 and had everything I wanted: a rewarding career, a happy marriage and a promising future. My investments were doing well, and I’d just bought a new car. I owned a house and was saving for a bigger one. I was in control of my life and, if I took a rare moment to think about it, I felt like a conqueror.
I was a type-A personality, which I knew could be bad for my health. My father already had suffered two heart attacks, and I didn’t want to follow in his footsteps. So I watched my weight, was careful about what I ate and worked out at the gym three or four times a week. I was in great shape and felt energetic and powerful.
My story begins on December 30, 1985. In just two days, it would be the New Year, and I was eagerly anticipating a major change in my career.
At that time, I was working for the Washington, D.C., city government. I had a master’s degree in Urban Affairs and Policy Analysis and had a position in the city’s real estate development department. My job was to facilitate the construction of downtown projects, making it easier for buildings to get built and open their doors to the public. I had chosen to work for the government because I wanted to help build a better world. I liked driving around town and seeing the results of my work. Lately, however, I had become frustrated with the city bureaucracy and had decided to look for a new job.
By going to school at night, I had recently earned an MBA in Finance from a college in Arlington, Virginia, where my wife, Stephanie, and I lived. With this added credential, I was looking at jobs in either finance or real estate.
I’d had several promising interviews and had just been asked by one company to return for a follow-up meeting after New Year’s.
So, on December 30th, when Stephanie dropped me off at the gym and went shopping for a dress to wear on New Year’s Eve, I knew my life was about to change. What I didn’t know was that it would change as dramatically as it did....
Part 1: Surviving the Crisis
The Explosion in My Head
I’d finished jogging around the track and had just started lifting weights when, all of a sudden, I got a terrible headache. I went over to the gym attendant and asked for an aspirin.
"Sorry," she said. "We’re not allowed to give out anything, not even aspirin. What’s wrong?"
"I have the worst headache." The pain already was so bad that I was starting to see double.
"I can call an ambulance for you," she offered, "but that’s all I can do."
Why not call an ambulance? I thought. If it turns out to be nothing, I’ll be a little embarrassed; but this feels really bad, and I should check it out. "Okay," I decided, "call an ambulance."
I started toward the locker room to change out of my jogging shorts. But pain and dizziness overwhelmed me, and I barely staggered to a table and chair a few feet away. I landed in the chair, then lay my head on the table. I don’t know how long I sat slumped like that; my sense of time was becoming distorted.
"Sir, how are you?" the paramedic asked.
"I don’t feel so good." I told him about my headache.
"Okay, let me help you onto the gurney."
"Can you take me to -- Hospital?" I wanted to go there because it was affiliated with my HMO and had a very good reputation. But it was located across the Potomac River, in Washington, D.C.
"No. We have to take you to the nearest hospital." This turned out to be a small, community hospital.
Later I wondered if my story might have unfolded differently, had I been taken directly to the hospital I’d requested.
The paramedic wrapped a blanket around me and wheeled me out. It seemed like miles before we reached the ambulance and even longer before we arrived at the hospital. By the time I got to the emergency room, I thought my head was going to explode.
Suddenly I remembered that Stephanie would be on her way to the gym to pick me up. The paramedic called the gym and found her already there.
"Hello, Mrs. Berger? I’m here with Paul, in the emergency room. He wants you to go into his locker and bring his clothes, wallet and coat. He left everything behind when we brought him here."
Then he turned to me and said, "She wants to know the combination to your lock."
I rattled off the numbers, and he repeated them into the phone.
"She says she’ll be here in a few minutes."
The emergency room was quiet that evening. I lay on a bed in a dark, curtained-off area, waiting for Stephanie to arrive with my things. The pain in my skull was so intense that I had no idea how much time had passed before she finally appeared. She told me it was ten p.m. and explained that I’d given her the wrong combination to my locker. The staff at the gym had to break the lock so she could get my things.
At that point, the neurosurgeon on call showed up.
"Can you describe what happened?" he asked.
Gritting my teeth from the pain, I told him everything I remembered.
"Do you suffer from migraines?"
"No."
"Are you having double vision?"
"Yes."
The neurosurgeon raised an eyebrow.
"Do you know what day it is?"
I think I answered correctly.
"I’m going to order a CT scan," he said. "Someone will be down in a few minutes to take you there, Mr. Berger."
By the time the CT scan results were available, it was near midnight. The neurosurgeon admitted me to the intensive care unit and ordered painkillers and other medication.
He told me that a blood vessel in my brain had ruptured, and blood was flooding my brain, causing the pain. He said that this was very serious; in fifty percent of the cases, the person dies. He said that I was lucky I had come to the hospital right away, and that he thought I would be okay.
He asked me how old I was. Stephanie answered, "Thirty-six."
"Me, too," he said. "But for the grace of God, this could be me," he told us. "This can happen to anyone, at any age."
Luckily for us, Stephanie worked for a national association representing surgeons. The next morning, before returning to the hospital, she called her boss, Matty, to ask for her help. Matty had many high-level connections within the medical community. Stephanie asked her to check the neurosurgeon’s credentials and find out more about my diagnosis, a "subarachnoid ruptured aneurysm on the carotid artery."
When Stephanie arrived at the hospital, I was still in a great deal of pain. My area of the ICU was darkened. Bright lights, loud noises or other intense stimulation could cause further bleeding, the neurosurgeon had said.
"How do you feel?" Stephanie asked.
"Okay," I answered automatically. "No. Not okay. My head still hurts."
I stared into the dark room for a few minutes. Stephanie said nothing, trying to take in all of the monitoring equipment hooked up to me. I breathed heavily, to fight back the pain.
"You have to get my health insurance card. You have my wallet. And call them. It’s an HMO. You have to call them and tell them I’m here. They have to know for the insurance coverage."
Then the neurosurgeon came into the room.
"I have some papers for you to sign. You must have an angiogram so we can locate the aneurysm. When we locate it, we will be able to operate right away. It is a radiological test. We inject dye into your leg, then trace the blood flow with x-rays through the vessels up in the neck and head.
"I’ll probably transfer you to a university hospital for the surgery. They will know better how to care for you there for this situation. The literature shows that operating within seventy-two hours for patients like you, Mr. Berger, have the very best outcome."
He gave me a clipboard with the informed consent release papers for the test.
The very best outcome...Seventy-two hours... The words echoed in my mind. I was sure I would have the best outcome; I always did well on tests. I figured everything would be back to normal in a few days, and I’d forget the whole incident like a bad dream.
About an hour later, I was taken to the radiology department for the angiogram, and Stephanie headed for the telephone. She called Matty, who reported that the neurosurgeon was good. But she added that everyone had told her I should be moved immediately to a university hospital. She gave Stephanie the names of the top neurosurgeons at the university hospitals in the Washington, D.C., area, including the one that was partnered with my HMO. Stephanie had already called my primary care physician, Dr. Lanman, and this waswhere he was having me transferred.
Matty also said that the experts advised that the angiogram be performed by a radiologist who specialized in neurologic imaging. I was undergoing the test with a general radiologist. Not a good omen.
Stephanie then called the neurosurgeon recommended by Matty’s contacts, Dr. King, at the hospital to which I was being transferred. She asked him to take my case, and he readily agreed.
Next, she canceled our New Year’s Eve plans. Our friends Jerry and Marie were supposed to come down from my hometown of Philadelphia to be with us. We’d also had tickets to fly to St. Martin the next weekend; perhaps Jerry and Marie would go on our trip instead.
Finally, Stephanie called my office and tried to explain what was happening. She said that the call wasn’t easy for her. We had many more questions than answers to convey at that point.
Stephanie and I spent New Year’s Eve in the ICU. The staff was kind enough to let her stay as long as she wished.
When I was single and didn’t have a date or a party on New Year’s Eve, I felt like the world was going to end. This time, although I had my wife at my side, my world as I knew it had ended.
The next morning, after Stephanie had returned to the hospital, the neurosurgeon came by on his rounds.
"I examined the angiogram," he said sadly. "I know exactly where the aneurysm should be, but I cannot find it on the film. It is possible that the bleeding is obscuring the aneurysm," he huffed.
"If I could see where it was, I would operate immediately. In Europe, they would let me operate and find the aneurysm during surgery. But in the United States, they do not allow it; the threat of malpractice. Even though I know where it should be, and you should have this surgery as soon as possible."
This was a terrible blow. Matty’s warning that a specialist should perform the angiogram echoed loudly in my mind.
"Is it the quality of the angiogram? It wasn’t done well by the general radiologist, was it?" Stephanie asked, trying to stay calm.
"I don’t know," he replied. "There is too much blood to see where an aneurysm might be."
"I’ve talked to Paul’s HMO," Stephanie said. "They’re transferring him to the university hospital this morning."
"That’s okay," he said graciously. "I will be happy to provide them consultation on Mr. Berger’s case."
When the ambulance driver came, Stephanie told him no sirens; a slow, quiet, easy ride. She would follow in her car. My head still hurt, and I was glad to be leaving. I was sure that Dr. Lanman and Dr. King would get moving on my case, solve the pain, and get me back on my feet.
Soon after I was admitted to the university hospital’s neurosurgery floor, Dr. Lanman came to see me. He became our go-between with the other health care professionals and served as our "translator." He explained all the neurosurgery terms and described what we should expect. He was my age, energetic and concerned for me. I often have thought that I received a little extra effort because I was the same age as most of the doctors and nurses. Were they also thinking that "there but for the grace of God go I?"
For the next few days, I stayed in bed. The hospital room was dark, and I wasn’t allowed a TV. The doctors wanted to limit any stimulation that might cause additional bleeding in my brain. I had no appetite, had trouble urinating and continued to suffer a constant, throbbing pain in my skull, despite the medication and isolation. I could still read, write and talk, but most of the time I said little.
Day and night, Stephanie sat near me in the dark room, watching me; watching my blood pressure monitor registering near 200 over 150 (normal is 120 over 80), my heartbeat slightly arrhythmic. I could see that she was overwhelmed with concern. But neither of us realized how close to death I was. We were just too young to understand the meaning of death—or life.
"Paul, I have to call your parents. What should I say?" Stephanie asked later that week.
"Tell them I’m okay. Tell them not to come. They should enjoy their vacation in Florida. It’s too cold and icy here. Besides, it might be too much stress for Dad."
Stephanie called. "I want to talk to him," my mother insisted.
"They’re not allowing a phone in his room just yet," Stephanie said, not telling my mother that the loud ringing could trigger more bleeding.
"Stephanie, anytime anything is involved with the brain, it is really serious," Mom said. "Should we come to Washington?"
"No. Let’s see how these tests go for the next few days. Paul just doesn’t feel he’s sick enough."
Stephanie promised to call every day with an update on my progress. But mothers always have ways to find out about their children. That evening, when Stephanie returned home, the phone was ringing. It was Jonathan, my high school friend, a doctor. His parents are good friends of my parents. My mother had called him in Philadelphia and urged him to contact Stephanie.
Stephanie repeated all the medical terms, tests and information she had gathered in the past few days. "They just can’t seem to find the aneurysm. And Dr. King now isn’t even sure it is an aneurysm. He said he can’t see anything on the angiogram; there’s too much blood. Please don’t say anything about this to Paul’s parents. We don’t want them to worry."
"Well, if it is an aneurysm," Jonathan said, "the conventional wisdom is that whatever functions the person has right after the bleeding is where he’ll be, or less. For example, if Paul could not talk or write now," he said, "there would be little hope that he would regain that after the surgery to close the aneurysm. Did they say anything about that?"
"I don’t think so, and Paul is talking and reading and writing. He can still walk, although they aren’t letting him out of bed."
"Well, that sounds positive. Call me if you need anything."
The next day, Dr. Lanman told us about some new equipment that had been delivered to my room. The bleeding in my brain had caused swelling and pressure. Sometimes, to alleviate the pressure, the neurosurgeons drill little holes in the skull. The equipment was there if they needed to do so.
This was a blow.
"I thought Paul was getting better," Stephanie said weakly.
"Well, let’s hope they don’t need to use it," he said, trying to be comforting.
Stephanie made some notes in a little pocket notebook. There was so much information and new terminology that keeping notes had become her only way to cope. Every few hours, in my dark room, she squinted to write down my blood pressure readings, medications and comments from the nurses or doctors. She had started to collect important phone numbers, too, including Dr. Lanman’s direct line, which she later used more than once.
Finally, a full week had passed since my headache had started. The pain had dulled somewhat, either from the medication, reduced swelling or just having lived with it for so long.
Dr. King ordered a second angiogram. He explained that, because my condition appeared to have stabilized, enough blood should have cleared to see where the bleeding had originated and to make a decision on the next step in treatment.
This time, the test was performed by a neuroradiologist, a specialist in interpreting images of the brain. After a few minutes, he located the aneurysm. He grumbled, then said, "Dr. King will take a look at this and discuss your options." I didn’t want to know any more.
When I returned to my room, Stephanie was waiting. I told her what the neuroradiologist had said, but I didn’t feel like talking about it. I knew that Stephanie wanted me to have surgery. She wanted the doctors to perform their medical miracles and make me completely well again. I didn’t feel the same way. I didn’t want surgery; I didn’t feel that sick. And deep inside, I was too scared to breathe.
I knew things were bad when Dr. King sat down at my bedside to talk to me about the angiogram. "Now that we know where it is, I can see the aneurysm on the first film," he said. "We have to operate."
"What other choices do I have?"
"If we don’t operate, you could die from the bleeding."
"Can I die from the surgery?"
"You can die from the roof of the grocery store falling on your head. In this institution, under my care, no one dies from this operation."
"I just don’t know."
"How soon would you schedule the operation?" Stephanie asked. "His family wants to come in to be with us for this."
"Well...today’s Thursday.... Paul is stable, getting a little better.... We could schedule it for Monday." Then he stressed, "Paul, you have to have this surgery."
"Tell me a little more about what you do," I said, trying to concentrate. My mind was a blur, grogged out from the medication and now this heart-stopping news.
"This is not a difficult operation. It’s our bread-and-butter procedure," he explained, trying to soften his clipped manner. "An aneurysm is a bump on your carotid artery. Yours is about the size of a large marble, and it’s well-defined. It’s something you’ve probably had since birth, and it could have burst at any time; last week, or fifty years from now picking up a bag of groceries, or any sudden physical exertion, like lifting weights. We open the skull, reach down and put a platinum fastener over the aneurysm. If nothing goes wrong, you should be able to leave the hospital in a week or so, then recover at home forabout a month or two."
"What do you think?" I asked Stephanie, stalling for time, trying to clear my thoughts so I could reason this out.
"I think you should have the surgery. I don’t see that there is any choice. If Dr. King doesn’t operate, the aneurysm can continue to bleed and...."
"Okay." I felt beaten down and frustrated by this total loss of control over my life. This feeling would soon become an unwelcome constant.
According to Stephanie’s notes, Dr. King also told her I could have a stroke, become paralyzed, lose my speech, not work again. But she didn’t really hear or believe him. She simply assumed I would do well and that our lives soon would return to normal.
Stephanie didn’t get back to the hospital until late the following day. I missed her. I was bored in the dark, with no TV, no light to read by, no concentration to think.
After going to her office to thank Matty for her support, Stephanie had gone to a medical library to read everything she could find and understand about aneurysms, making copious entries in her pocket notebook and adding to her list of questions for the doctors. Among other things, she learned that the platinum clip implanted in my brain to seal the aneurysm wouldn’t set off a metal detector or be disturbed by cabin pressure on an airplane. This was good news, because we traveled to Europe at least once a year, and she was sure we’d be traveling again in the near future.
Meanwhile, my blood pressure continued to rise. To lower it, I was transferred to the ICU for intravenous medication.
As news of my impending surgery spread, I was visited by a parade of family, friends and coworkers. Even the head of my department, about five levels above me in the bureaucratic hierarchy, came to see me. This was so unexpected that I got scared.
"Why are they doing this? Am I really this sick?" I was angry and confused. Stephanie didn’t know what to say.
My parents flew in from Florida, and my brother, Stanley, caught a flight from San Francisco, where he was living. They planned to stay just a few days, based on Stephanie’s upbeat assessment of my condition. They eventually stayed nearly two weeks, waiting until they were sure I would survive.
I didn’t like being the object of all this attention. I was tormented by the unrelenting painin my head, fearful of the upcoming surgery and frustrated by not being allowed out of bed. I reacted by being defiant. Late that night, on the eve of my surgery, I begged my nurse to help me get out of bed.
I wanted to sit on the commode, I said. Once in the bathroom, I sat there, trying to remember what to do. Suddenly, my head exploded again.
I tried to call for the nurse, but I don’t know if any words came out. I don’t know how much time passed, only that I was back in hell.
The next thing I knew, I was undergoing another CT scan. My aneurysm had opened again, flooding my brain with a fresh tide of blood.
As I was being wheeled back to the ICU, I saw Stephanie and Stanley. It was morning, and they had come to wish me good luck. Despite the sudden, new bleeding, Dr. King had decided to operate.
My last words to them, pushed out through unbearable pain, were: "Let’s get this over with!" Looking back, I wish I’d said something more memorable, because it would be a very long time before I would speak again.
