From:"Harry H. Chefitz" harry@easydoesit.com
Sent: October 7, 2003

Prologue

“Where the spinal cord enters the brainstem, it expands into an inch of vital flesh, the medulla. Swallowing, vomiting, breathing, talking, singing, the control of blood pressure, respiration, and, partially, heart rate -- these are the tasks carried out in this magic inch. Cut the brainstem below the level of the medulla and the blood pressure drops to zero, breathing ceases, and death follows within a minute or so.”

The Brain, Richard Restik, M.D., 1984

The First Symptoms

Towards the end of July, 1993, I noticed an unusual feeling while taking a shower. My body felt strange when I lathered, and again while drying off with a towel. Was the feeling coming from my hands or my chest? At first I was not sure, but then I decided that it was a “pins and needles” numbness in the fingertips of my right hand.

Each morning, as I showered, I would take notice of any changes. And change it did. At first it was just in my right hand fingertips. Then I began feeling it in my left hand fingertips. And then my entire right palm. By a week or so after first noticing the tingling, I was no longer sure if the feeling was isolated in my hands. Other parts of my body also felt strange when I touched them. But was it because of the feeling in my hands? Or was it something else! Also, I began to wonder what was causing this sensation? Could it be an allergic reaction to soap or shampoo?

After another week passed, I began to get nervous. I even mentioned it in passing one night to my wife, D., who is a physician and co-chief resident of pediatrics at <name removed> University Hospital, in <name removed>. A few days later, while down the hall from my office at AT&T, my office phone rang. I rushed to my office to catch the call, but my legs didn’t seem to be moving as fast as they should, and as I turned into my office, I bumped into the door post. After the call, I noticed another symptom, a tightness right below my rib cage, almost as if someone were squeezing the muscles inside. I immediately called D. to report these new symptoms. She told me what I expected to hear -- time to make an appointment with my internist.

Visit to the Internist

I thought that it would take clever detective work to diagnose my problem, since the symptoms did not seem to be connected: tingling in my hands (and by now in my right big toe), fatigue, clumsiness when walking, and that feeling below my rib cage. Throughout August, I was constantly taking stock of my physical well being. When I ran outdoors with my three-and-a-half-year old daughter, L., she outran me. When I straightened my back in my chair at work, the feeling in my chest was more pronounced. My balance too seemed slightly off, although not enough to make me fall. And finally, the tingling in the fingers and hands, now equal in both hands, would just not go away. It was constant. Armed with a written list of my symptoms, so as not to leave any out (D.’s idea), I met with my internist.

The first thing the doctor did was to make fun of my list. “Only my elderly patients do that,” he said. Then he began the exam, much of it neurological. Afterwards, he went through the possibilities: 1) Lyme Disease -- over-diagnosed, he said, but he would run the blood test. 2) MS -- doubtful, since the exam showed no weakness. 3) Neurological -- again doubtful, since he could find no evidence in his examination. 4) Carpel Tunnel Syndrome ­­perhaps; take a rest from work and see if the feeling in my hands goes away. 5) Stress -- probably; again, a rest from work would do the trick. After the doctor’s visit, I did two things. One, I proceeded with my vacation plans scheduled for the following week (a week in Vermont) to get away from work, and two, I made an appointment to see a neurologist.

Vacation

Vermont was beautiful. My in-laws had rented a house on the top of a mountain, with a steep dirt driveway leading up to the house. There were only two things wrong with the vacation. Not only did the symptoms continue, but I found it difficult to keep up with the group on our daily walks. Also, the driveway was so steep for me that I had to take the car up and down the driveway while everyone else walked (D.’s grandmother joined me in the car rides).

The Neurological Exam

It took a month to see the neurologist. I was finally seen at the end of September. He did a complete history and exam. A medical student was rotating through his office that morning, so the exam even included some teaching. Once again, the exam seemed to contradict my history and complaints. Though I was sure by now that I had a neurological problem, it did not show in the exam. All that the doctor could suggest was that I call him if anything changed.

The EMG

By October, both my wife and I were worried. The symptoms, although not getting worse, remained constant. I had never had anything wrong with me besides an occasional flu, and I knew that what I now had was serious. My only problem seemed to be in convincing others that I had a problem. I called my neurologist again and he suggested an EMG test, where needles are placed in the arms and legs and electrical “shocks” are sent through the nerves and measured.

The test was administered on Friday, October 29, 1993. It was negative. Before the test the examiner, another neurologist, did a quick neurological exam. Also negative. After the EMG, my neurologist came into the room and pronounced, “You have no neurological problem.” The not-too-subtle hint was that it was all in my head. The sad part is that I began to believe my two doctors who were telling me that there was nothing physically wrong with me. Instead, I should have been furious with them. How dare they ignore me, an otherwise healthy 31-year old, when I was complaining about classic neurological symptoms! Forget about the test results, I thought, and listen to the patient! These were not ignorant doctors; they had wonderful reputations. But they let their egos impair their medical judgment. To their way of thinking, if they could not find the problem with their tests, then the problem did not exist.

The Minneapolis Convention

The next day, Saturday, I began to get what I thought was a cold. My throat felt strange and I seemed very tired. I was scheduled to leave that Monday for a three-day technical conference in Minneapolis. Both my wife and colleagues at work suggested on Monday that I stay home since I was not feeling well. Nonsense, I said. I had just seen the doctor on Friday and he said that I did not have a neurological problem. The only other thing it could be was psychological. So this trip would be good for me. I was staying at a fancy hotel and would be meeting many vendors in a relaxed atmosphere. Why, it was almost as good as a vacation! So off I flew on Monday to the annual GIS (Geographical Information Systems) Conference. By now, my speech was slurred.

From Tuesday to Thursday of this first week in November, things got progressively worse. At the conference seminars, I struggled to stay awake. Even though I found most of the talks very interesting, I could not keep my eyes open. In fact, the opening speaker, the only female to cross both the north and south poles on foot, could not have been more interesting. She narrated a slide show of her trip across the south pole. I was embarrassed as I struggled to stay awake and prevent my head from bobbing up and down.

My hotel was a few blocks from the convention center. Since it is very cold in Minneapolis in the winter, buildings downtown are connected by heated glass skywalks. So each day I would walk back and forth from my hotel to the convention center with my laptop computer slung over my shoulder. Keeping my balance was now becoming a challenge. Although I didn’t fall, I was weaving a lot as I walked.

There was also a Job Fair at the conference, and I had to interview candidates for an opening at AT&T. Not only was I fatigued and slurring and spitting as I spoke, but I had to keep from falling over as I stood to greet the candidates. I can only imagine what kind of impression I made!

With my condition worsening, I managed to make it through the conference and the Thursday night trip back without any major damage, arriving home late at night.

Friday, November 5, 1993

At work on Friday, people began to notice my condition. I was holding onto walls as I walked and my speech was very slurred. I called D., who then spoke with my neurologist to set up an MRI test on Monday. In the afternoon, after struggling to keep my eyes open at a meeting, I decided to go home. By then, D. had received another call. It was a message from my boss to call him back. D., worried that something had happened to me, was unable to reach anyone from my group since we were all at the meeting. She left a message on my office answering machine, and before I left for home I assured her that I was still alive.

D. eventually did get in touch with my boss late Friday afternoon, who conveyed to her the seriousness of my now deteriorating condition. After she got off the phone with my boss, D., now very worried, called a pediatric neurologist with whom she works. Although he was already at his home, the neurologist, also a personal friend, promised D. he would drive to my house and check on me. He also rescheduled the MRI test for the next day, Saturday, not Monday.

When the pediatric neurologist arrived at my house, it was Friday night. I was alone with L. and my son, E., who was seven months old. By this time, I no longer trusted my balance enough to pick up my son. After the exam, the neurologist agreed that I should not carry E.. Besides finding balance problems, he also noticed that my tongue was deviating to the left. He stressed that it was urgent that I have the MRI test the next day, Saturday, and not wait for Monday. As a fellow observant Jew, he was well aware that I would violate the Sabbath only under the most extenuating circumstances. This was one of them.

Saturday

I was not nervous as I went for my MRI. I had been having tests since the summer, and the results were always negative. I was sure, almost resigned, that once again a test would come up negative. This time I was wrong.

We waited in <name removed> University Hospital while the radiologist read the MRI. Under normal circumstances, the radiologist does not read the MRI immediately, and it may take days to hear the results. In my case, the MRI looked so bad even to the medical resident, that the radiologist was summoned without delay. He spoke to D. over the phone as he gave her the news. I had either an AVM (Arterial Venous Malformation -- where an artery and a vein are connected, thus weakening the walls of the vein to the point where it may leak blood) or a cavernous malformation (also called a cavernous hemangioma -- an abnormal collection of tiny blood vessels, not connected with an artery) in my brainstem. The swelling was caused by a blood leakage and the pressure on the nerves in the brainstem was the source of my complaints over the past five months. Doctors later confirmed that I had a cavernous malformation.

My first reaction, strangely enough, was happiness. I was vindicated. I wasn’t making it up. I didn’t have a psychological problem. I really did have a neurological problem, as I had suspected! But now what? Do I go home? Who was my doctor? That dilemma, unfortunately, fell on D. to solve, since she knows more about doctors and hospitals than I.

We now realized that I had no choice but to be admitted to the hospital that day, so we quickly chose a neurosurgeon under whose name I would be admitted. Stressing the seriousness of my condition, the neurosurgeon’s orders were for complete bed rest, immediately.

The Big Decision

Now D. and I both were in a state of shock. Here I was, lying in a hospital bed, and we had to quickly make decisions that could mean the difference between life or death. Do I need surgery? If so, at which hospital should it be performed? One of the pediatric residents on call that day knew a resident at Columbia Presbyterian Hospital in New York City, who coincidentally was on call that night in the Neurological Intensive Care Unit. She told D. that Columbia was the place to be for neurological problems. After sundown on Saturday, the end of the Sabbath, D. began making the phone calls to my family, telling them the shocking news. She also began making exploratory phone calls regarding a transfer to the Neurological Intensive Care Unit at Columbia, although she was still hesitant about a transfer. Being at <name removed> was comforting to her; she knew many people in the hospital, and it was close to home. Going to Columbia would mean a new environment where she knew no one, and one which was far from home. Without deciding yet on a transfer, she went home to put the children to bed (D.’s parents had walked over in the morning to watch the children while we went for my MRI), but not before arranging for R., her close friend and fellow co-chief resident in pediatrics at <name removed> to come to my bedside and monitor my condition. Not only did R. sit by my side and allow D. to go home, she also continued the phone calls to the specialists, sometimes impersonating D. to bypass lengthy explanations as to her relation to the case.

Two things happened as I listened to R. talk on the phone. One, I broke out in a cold sweat, probably because I was beginning to understand the seriousness of my condition, and two, I decided that I wanted to proceed with the transfer to Columbia, one of the best possible hospitals in the country for my condition. As I later told D. that night, “You have only one husband, and he has only one brain.” We then arranged for my transfer to Columbia by ambulance, on Sunday morning.

D. settled into a reclining chair for the night. I don’t remember sleeping that night, since every two hours I was given a neurological exam. It would be two months before I would once again have an uninterrupted night’s sleep.

Columbia - Part I

On Sunday morning, I was transferred by ambulance to Columbia. Compared to my two subsequent ambulance transfers, this one, the first, was the easiest. Once at Columbia, I was placed in the NICU. I paid close attention to the neurological exams given by the attending physician and later by the residents. I wanted to keep track of my deficits, and learn new tests. In fact, I made sure each resident who examined me found every deficit. If they didn’t, I would advise them on the test to perform to find the deficit.

On Monday, I had an angiogram. A hole is made in an artery in the groin, and a tube is inserted up the artery towards the brain. The tube is used to inject a liquid, and pictures are made of the blood vessels in the brain. The difference between an MRI and an angiogram was explained to me thus: an MRI is like a topological map and an angiogram is like a street map. The neuro-radiologist explained the risks outside the O.R., which included a 1 in 2000 chance of a stroke.

The next thing I remember after being wheeled into the O.R. and speaking to the nurse was waking up in a different room, where D. and my parents were waiting. Now the painful part began. The neuro-radiologist had to apply pressure to the hole in the artery where the tube was inserted. He pressed with all his might for 30 painful minutes. In the NICU, I was told that I could not move for 12 hours, lest the wound open up. That day I did two things -- I complained about not being able to move, and I watched the clock for the twelve hours to pass. My discomfort was increased by another factor -- I had F.O.B. (Fear Of Bedpan). There was no way I would use the urine pitcher, let alone the bedpan. Though I later became accustomed to urinating into a pitcher, I proudly refused to use the bedpan during my entire ordeal.

As that magical twelfth hour approached, I informed my nurse that I wanted to be helped to the commode in my ICU room. After a little haggling over when that twelfth hour really was, she acquiesced and my pain was over. The angiogram was the worst procedure I had to endure during the whole ordeal, because of the initial pain and the order to remain still for twelve hours.

I remained in the ICU for another day for observation, and then had my lesson in being bumped from the ICU. At about 10:00 pm on Tuesday night, I was told that my bed was needed, and I would shortly be moved to the regular floor. Finally at 1:00 am, I was taken upstairs. As I was lying on the bed in the hallway, I heard loud screaming and cursing coming from a patient in a nearby room. “That’s not my roommate?” I asked hopefully. “Sorry, it’s the only room with an empty bed,” came the reply from the nurse. I immediately bolted upright in my bed and exclaimed, “I am not moving into that room!” As the nurses called for the resident, I began to sweat and my head began to pound. The resident took up my argument with the nurses (“Only a comatose patient should be moved into that room!”) who miraculously found another empty bed just around the hall in the epileptic ward. My new roommate was on sleeping medication and was snoring loudly.

I will never forget the helpless feeling of leaving the NICU that night. It has been compared to the shock of leaving a mother’s womb. It was now 2:00 am and I was more depressed than ever before. I picked up the phone, desperately needing to talk to D., only to find that I had to wait until 7:00 am just to make a collect call. Not heeding my bed-rest order, I grabbed on to my I.V. pole and made for the hallway. “Where is the nearest pay phone?” I asked at the nurses’ station. “Down the hall,” a nurse pointed, barely looking up at me. And so I hobbled down the hall, clutching my I.V. pole. The walk required more energy than I anticipated, but luckily there was a chair near the pay phone. I called my wife. I cried. I couldn’t walk anymore and didn’t know how I’d get back to my room -- not that I wanted to! D. told me not to move and she phoned the nurses’ station. Soon, a nurse came to take me back to my room. In bed, I put on my headphones and listened to music for the remainder of the night. But from that moment on, I was determined to do whatever it took to get discharged.

The next day, the situation improved as they moved me to a private room. Every time my doctor came by, I mustered all my strength, stood up, and smiled. No new symptoms were present, and I wanted to be home by the weekend. In the meantime, my younger brother D from Chicago and his wife D wanted to brighten up my stay by having a plant delivered to my room. But they neglected to ask the florist for the dimensions of the plant. Imagine my surprise as a 5-foot “tree”, somewhat resembling a Christmas tree, was brought into my room. It not only provided a moment of humor in my hospital stay, but it also required my mother-in-law to come to the hospital on discharge day solely to carry the tree home.

By Friday, I was discharged. I was told by the neurosurgeon that there was a good chance that the bleeding had stopped and that the blood would be absorbed. Surgery in the brainstem was too risky and probably not necessary. I would return in one month for a super-selective angiogram. I was told to give the neurosurgeon a call if I noticed things getting worse.

Weekend Reprieve -- a Vision in the Night

It was great to be back home, though I needed a cane to walk around. My favorite black leather chair had been moved to the living room, so I could sit comfortably. But the night was a problem. By now, I was having difficulty swallowing saliva, so I would drool terribly while sleeping. I kept a spittoon by the side of my bed and resigned myself to a wet pillow.

That night, a most unusual thing happened while I was asleep. In the midst of a dream, I saw a vision of D.’s maternal grandfather, who had died a few years earlier. He didn’t speak; he just smiled. Startled, I woke up. Again I fell asleep and was dreaming when the same thing happened. Once again, D.’s grandfather appeared smiling and woke me up. I knew this was not a dream, since the vision was interrupting my dream and it was unlike anything I had experienced. His appearance had startled me twice, and I was unable to speak to him. I fell sleep again, and soon enough, like in folktales, he appeared for a third time. This time I spoke to him. I told him that we had two children: a 4-year old girl L., named after him (his name was L.), and a boy E., just 7 months old. He smiled and shook his head knowingly before I woke up.

Why did this happen? At the time, I didn’t understand it. I thought that he had come to reassure me that all would be well. Later, I realized that that night was the first night I had trouble breathing. As I told D. the next night, I was afraid to go to sleep, lest my breathing stop. It is quite possible that those three visits corresponded to three time I had stopped breathing. The purpose of his visits were to wake me and have me resume my breathing. I still am not sure why I had seen D.’s grandfather, and not my own, who had died just 8 months earlier. Perhaps it was too soon after his death for him to perform such a mission.

The next day, Saturday, I was looking out the window and realized that everything was shaking up and down. Sure enough, no matter where I looked, my eyes would not stop jumping. I began to panic. Was this the deterioration that the neurosurgeon had mentioned? My wife and I called the neurologist, who told us not to worry, that some new symptoms were likely. Then in the afternoon, the tips of my ears began to feel numb. We then called the neurosurgeon, who calmed me by telling me that he also expected some ups and downs in my recovery, and I should worry only if the down-slide persists.

The next day, Sunday, we had a birthday party for L.. At first I stayed with the children, but then had to retreat to the family room as the commotion became too much for me. By now, the symptoms that bothered me most were my eyes jumping up and down and my inability to eat without coughing and choking. Besides being very tired, I had trouble standing. Each time I tried to stand I had to grab hold of something to stop me from falling over.

Monday

I told D. not to go to work the next morning. I knew I couldn’t be left alone that day. I sat in my chair, and prepared for my morning prayers. Since I had trouble sitting upright, my prayer shawl was just barely draped over my shoulders. I could no longer read, so my wife read the prayers aloud as I said them with her. We had just started the Sh’ma, one of the most important prayers, when I told her to stop. I no longer had the strength to breathe.

D. called the neurologist at Columbia and was told that I had to go to the Emergency Room at <name removed> before being transported back to Columbia. I was devastated. As sick as I was, I dreaded a return trip to the hospital. In retrospect, I wonder how these expert doctors could have made this mistake. Here I was with a bleed in my brainstem, and they sent me home! Even after we called to report that my condition was deteriorating, they kept me home. Because of their decision to wait, I was now on my way to the E.R. at <name removed>.

ER

A team of doctors huddled around me, listening to my chest and asking me questions. Then the most dreadful thing happened. I heard D. telling me I had to be intubated. Fear quickly grew. Since my wife is a pediatrician, I have heard her discuss the process of intubation many times (placing a tube down one’s throat to attach to a respirator). The word took on a whole new meaning when it was applied to me.

The anesthesiology resident looked rather inexperienced, so D. called for the pediatric anesthesiologist we know at the hospital. He ran to the ER and was by my side rather quickly. I was hooked up to monitors and IV fluids, and unbeknownst to me I was given an anesthetic. The next thing I knew, I was in a new room with a tube down my throat and one in my penis (for urination -- common procedure, I am told). I was in the surgical intensive care unit and unable to talk.

From this point on, I communicated by writing. The italic print represents what I wrote at the time, while the comments below are later explanations.

I can’t tell if I’m breathing. How do I breathe?

It’s too hot in here. Hard to breathe in this heat.

Am I breathing?

Fear of intubation was now replaced with a determination not to become dependent on the respirator. I wanted to breathe on my own without assistance from a machine. It was the first of many goals I set.

My chest feels “raspy”. Can you hear the chest noise when I inhale?

Welcome to suctioning. At this point, I did not know that I would need to be suctioned frequently, a process that required a vacuum tube to be inserted down my throat. I could not even swallow my saliva, so I relied on a suction tube, much like one sees at the dentist, to clear my mouth.

I swallowed and the tube hurts.

I was a very good patient when it came to the respirator tube. At first they had my arms tied down, in case the urge to pull out the breathing tube became too great. But the last thing I wanted was to repeat the intubation. So I exercised control over that urge. However, there was no getting around the fact that having a tube in your mouth and down your throat is very uncomfortable.

Then there was the other tube. My notebook is filled with scribbling about my penis. It hurt like hell with the catheter in it. And no one instructed me on its use. I was bearing down to urinate, which caused excruciating pain.

I don’t want visitors.

I’m not sure why I wrote that. I changed my mind soon after writing that and was visited by my mother-in-law, the rabbi from one of the local synagogues, and another pediatrician in the hospital who is also a personal friend. And of course, R. was there, assisting D. in my care. I remember her running down to get my chest X-ray, to make sure the tube was inserted in its proper place. It’s funny how the pediatricians provided me with the best care.

We waited as the transport team was assembled to bring me back to Columbia. This time, with my condition much worse, we needed a whole team to take me. In all, there were two doctors and four technicians accompanying me in the ambulance. This was one ride I did not enjoy. I concentrated on each breath (every five seconds) as a technician pumped a bag, and I squeezed the metal bar alongside my stretcher in pain every time I urinated (a newly placed catheter causes one to urinate frequently). Along the way, we passed an accident on the Turnpike, and the ambulance driver, being a good Samaritan, stopped to see if she could help. Meanwhile, I was counting every second.

Columbia - Part II

So here I was, back in the Neuro ICU at Columbia. They even had the same bed from the week before waiting for me, and I recognized the resident (a pediatric neurologist, of course, who was rotating through the NICU). When it came time to update her on my history, I preferred to write it all down, rather than have D. talk for me. It was now Monday night.

Waiting for Surgery

I don’t know when the decision to operate was made. I was never consulted and it was mentioned almost in passing. The surgery would not be for another week, so in the meantime, they wanted to prepare me for the event -- prepare me physically, not mentally. The physical preparation included feeding tubes, a tracheotomy to replace the breathing tube that entered my mouth, and numerous procedures during the week.

For mental preparation, I was on my own. It was a great help that so many relatives and friends came to visit me often. Their presence in the room made me feel more comfortable, even when I had to close my eyes and ask for quiet. My father and mother, especially, relaxed me and helped in my mental preparations. Unlike some parents, who would be devastated to learn that their son might die, mine remained strong in their belief and faith that I would pull through. Whether they remained as composed during the many hours in the waiting room, I’ll never know, but in my presence they did everything to keep my spirits high. Even so, there were moments I could not help but feel depressed.

I feel so down.

I can’t remember the context of this note. It is true that I was not a happy camper, but rarely did I complain, afraid that I would lose the emotional battle for my life that I was fighting. I do remember that I wrote this note to my wife, the person who lifted my spirits the most when she walked into my room.

One of the scariest episodes took place during my second MRI, while I was still intubated. It was the first time in a while that I had to lie flat on my back, and my saliva was pooling in my mouth. An MRI requires one to lie flat on one’s back, without moving, in a cocoon-like enclosure for close to an hour. The combination of not being able to swallow and requiring a tube for breathing made the minutes in the MRI unbearable. Finally, after feeling that I was choking to death, I kicked my leg as a sign for them to pull me out. They did so, and even suctioned me. Then they pushed me back. After a few more minutes, my pulse began to drop fast and I heard the neurology resident call for an end to the MRI. I was only worried that I had not stayed in there long enough for them to get enough pictures. But they had enough, I was told (and so did I).

I don’t like the tube, so I’d prefer the trach.

Who would ever think that one would want a tracheotomy? After two days of living with this tube down my mouth, I was now looking forward to a tracheotomy (cutting into the trachea through the neck for breathing). On Wednesday, they removed the tube and performed a tracheotomy.

For my next procedure, the insertion of my G-tube (in my stomach) for feeding, the anesthesia did not work as perfectly as it should have. I was being fed with a tube down my nose and they wanted to “upgrade” me with one directly into the stomach. The Demerol they gave me numbed the pain, but did not make me unconscious. I was annoyed at knowing what they were doing. I tried to motion to them to give me more anesthesia, but they couldn’t see my hand moving. I remember as they pushed the scope down my throat to my stomach to locate a good spot for the tube. I even remember them commenting about some ulcers in a nice straight line probably caused by the nasal-gastro tube. It was only after the procedure that they realized I was not completely out.

The ophthalmologist said if my vision doesn’t improve after surgery, there is medication to fix it.

The neuro-ophthalmologist would never understand what those words meant to me. Before and after the surgery, my chief worry was my eyes. I couldn’t keep images still! My eyes were like a T.V. set with the vertical hold broken. Since my eyes were shaking up and down, everything I looked at was quickly jumping up and down. His brief mention of a possible fix was something that I remembered and was a ray of hope. After the surgery, when my eyes still had not improved, I continually asked that he come back to see me to fix my eyes. I was frustrated when he never showed up, and he was the cause of my disastrous last day at Columbia. More about that later.

Hiccups again!

Starting with the day I was intubated, and all the way up to the day of surgery, I was plagued with hiccups that would last for hours. This was a sign of worsening pressure on the brainstem. There was nothing I could do about it and I was most thankful when I realized after the surgery that the hiccups had stopped.

You’re beautiful.

It was now Friday, November 19, D.’s birthday. What a way to wish her a happy birthday! That day stands clear in my mind for another reason. It was the day D. and I prepared my living will and the day I signed my Will. There are no words I can use to describe the feeling of completing those two documents just days before a dangerous surgery on my brainstem. I just wish I could have given my wife a better birthday present.

Sunday, November 21, 1993

From my hospital bed, I was made aware of the events in my hometown in <name removed>. A special prayer service was being prepared in my synagogue for the evening before my surgery. Announcements were made in all the neighborhood synagogues that weekend. The response was overwhelming, and reported to me. Hundreds attended, reciting Psalms and filling the synagogue to capacity.

I only wish that the community could understand the emotional lift that they gave me. While I was fully aware of my circumstances, I was unable to do anything about it. I could not even muster the strength to do the most obvious thing - pray. The fact that all these people were praying for me eased my pain and lifted my spirits. In fact, people in various parts of the U.S. and in Israel had been told of my condition and were praying for me.

It was hard for me to understand the reason for this tremendous support. After all, who was I? I was not a pillar of the community, someone that everyone knew and respected. I was just a regular guy. Many in the community only vaguely knew who I was, yet they took the time on a Sunday evening to drop everything they were doing to go to the synagogue and offer their prayers on my behalf. It was an unprecedented event in our community, and one that still brings tears to my eyes.

My favorite memory of that day was seeing my children, L. and E.. Though it was very hard to do, I knew I had to see them. L. had not seen me in a week, and I had returned unexpectedly to the hospital while she was at school. Dorothy, my ICU nurse, did a tremendous job of turning the ICU room into a non-threatening environment and hiding, as much as she could, the scary tubes that went into the various parts of my body. I was moved into a chair and anxiously awaited their entrance. My goal was not to cry. I did not want to worry L. any more than she must have already been. D. had explained to her that I would be unable to talk, and compared my tracheotomy tube to a nebulizer tube and mask used by asthmatics to inhale their medication (L. has used a nebulizer).

L. was a wonderful visitor! She told me stories and sang me Chanuka songs. She made herself comfortable on my bed, took out her collection of colorful markers, and drew me pictures in my notebook. E., meanwhile, was walking around while holding D.’s hands. I wondered who would learn to walk first -- he or I. The visit was very therapeutic, since it showed me, in a very direct manner, the reason for fighting so hard.

Other family members visited me that day. While I know the thoughts that were running through my mind, I can only wonder what they were thinking. My parents, my sister, and three of my brothers came to see me. They came from near and far -- my parents had driven from Boston the previous week, my brother D. and his wife D. flew from Chicago, my sister R and her husband S drove from Brooklyn, my brother D drove early that morning from Boston, and my brother A came after working that day in nearby Westchester County. The visiting policy in the ICU was very restrictive, so no one stayed very long in my room. This was probably just as well -- there is only so much that can be said at a moment like this. My oldest brother J from Chicago phoned and gave me an inspirational speech. Talking to me on the phone was even more awkward than talking to me in person. At least in person, I could nod my head, gesture, and write in my notebook. Over the phone, I was restricted to just listening.

The last person to leave me that evening was D.. There are two times according to Jewish custom when Viduy (confession) is said: on Yom Kippur and when one is facing death. I could not recite the prayer since I could not talk, nor could I read very well. I concentrated on the words as D. read the Viduy for me. This simple prayer that I recite every year on Yom Kippur will forever be more meaningful every future Yom Kippur.

I was now physically, mentally, and spiritually ready for brain surgery -- and death.

Warrior preparing for battle.

This was my last writing before surgery.
Monday, November 22, 1993

As usual, I was awake early in the morning, around 5:00 am (I would always be awake before the surgeons rounded on their patients -- and that’s early!). D. came in early and was by my side as they took me to the OR. I never liked the sensation of being wheeled around the hospital while on my back. The movement made me dizzy. But at least D. was with me.

I remember entering the OR. Much like others have recalled, the thing I remember the most was the bright lights shining down on me. This is my last memory before the operation.

The next thing I remember is being back in my ICU room with the nurses busily taking care of me. I had only one question: what time was it? I wanted to know how long the operation lasted. I tried pointing to my wrist, where one would normally wear a watch, but the nurses did not understand my gesture. The clock was positioned behind me, obviously not planned by someone who had ever been a patient. I knew I would have to wait for D. to find out the time.

The first thing I did as D. entered the room -- and I had thought about this before she entered -- was to smile and raise my hand in a wave. I wanted her to know that I was OK. Then I began working on determining the time. I motioned to my wrist again (as D. would later tell me, my coordination was not so good, so my pointing was more like slapping). She thought I was pointing to a newly placed tube in my wrist. I started to get frustrated. Won’t anybody tell me the time? Then I pointed at the approximate location of the clock. Finally, she understood! And she was ecstatic! Not only was I cognitively interested in knowing the time, but I was able to remember the location of the clock. Little did I know that my obsession with the time was a better sign of good news than my smile and wave.

It was now 4:00 pm. The operation had lasted from 8:00 am until 3:00 pm, although it took most of the morning to prepare me for surgery. All the parts of my body were connected to electrodes so they could see the effect of each nerve in my brainstem. I was placed on my stomach, with my head hanging off the bed. My head and shoulders were supported by poles. This surgery had been performed less than 200 times world-wide (the first one in this hospital was performed in 1988), and my neurosurgeon, Dr. Bennett Stein, one of the most experienced in this type of surgery, performed it only 24 times before my operation. If I’m ever interested, I can watch the micro-surgery on a video tape they recorded.

Continuing the good work from the previous evening, people in my community kept a day-long vigil of prayers and Torah study on my behalf while the surgery was in progress. Many of these people did not even know me. Some even fasted. All they knew was that a fellow member of the community was in danger.

Was this the reason why the surgeons were surprised to find a clear path to the bleed that bypassed the need to cut vital nerves (the doctors had expected paralysis after the operation until the nerves regenerated)? Was this the reason why I was able to stick out my tongue after surgery even though the surgeons thought they had severed this capability forever? Was this the reason that there was not any vital tissue in the cavernous malformation that was cut from my brainstem? I could continue for many pages with minor miracles from my surgery and later recovery.

Post Surgery

Can’t get comfortable.

Lying in bed for all these weeks was taking a toll on my body. I could not find a comfortable position. Not being able to move did not help either. Every time I wanted to turn, I had to ask the nurse to turn me. I could barely push myself up in bed when I began to slip down. It was so frustrating. I felt like a piece of meat cooking in the oven that needs to be turned every few minutes. To make matters worse, whenever I was turned in bed, I would feel the room spinning around me. I developed a habit of grabbing on to the bed rail and closing my eyes tightly.

There is air in my tube.

A tube was connected to my tracheotomy to provide humidity to prevent the secretions from drying up. As water (not air as I wrote) collected in the tube, it would make a banging noise that drove me crazy. The nurses, aware of how much the noise bothered me, would empty the water every few hours. I remember my last night in the ICU, when I was running a fever and fell asleep for a short while, the banging became a drum beat in a terrible nightmare I was having.

I need different flavors... lemons.

I was trying every trick I could think of to make myself more comfortable. I was unable to eat or drink anything until my bowels started working again and my throat was able to swallow. In the meantime, these weeks without food or drink was almost unbearable. So I developed a game. I would pretend that the ICU bed was a lounge chair on a sunny warm beach, and that my water pitcher contained lemonade (putting real lemons in the water assisted my beach fantasy). There I was, enjoying the beach and sipping a cool lemonade. Of course, I could not really sip any such thing, but I would use a straw to sip the lemon-water into my mouth, swish it around a few times, and then spit the water into a small bucket. The satisfaction this gave me was incredible. Soon, all my visitors knew that my quick hand gesture was a request for another sip.

Everyone was rather good at playing this game, except for D.’s sister, S. Perhaps she thought I was getting too hot on the beach, because one night she spilled the entire pitcher of lemon-water on me and my bed. Although it was just a case of her forgetting that I could not hold the pitcher on my own, it was actually a refreshing experience. After all, I needed a bath and the ICU nurse was quick to change my bed (with me in it, of course) and dress me in a new gown.

There were other tricks I used to distract myself. I would often pretend I was dancing slowly with D., with the music repeating itself in my head. I also pretended (though it was closer to the truth than I thought) that I was a wounded soldier fighting to return to battle.

It’s not pain. I just can’t catch my breath.

The nurses would sit me in a chair in the morning, and I would try to remain there until visiting hours so D. could see me in this position. Sitting in the chair took a lot of energy, and the respirator was on CPAP (assisted breathing). I would battle the respirator, trying to take my own breaths without assistance. After an hour or so of this, I would give in to the respirator and let it take over. But not without a fight.

Thick choc. milk shake.

It was Thanksgiving day and I still could not eat. Forget about turkey; my craving was for a thick chocolate milk shake. The nurses found this interesting, and even wrote in my records that I was requesting a thick chocolate milk shake. Unfortunately, my bowels were not cooperating yet, so food was still forbidden. But the word was out -- as soon as permission to eat was granted, I would be brought my thick chocolate milk shake. My craving for a milk shake became contagious. A fellow patient in the ICU, hearing of my request, told his wife he wanted the same when he was allowed to eat.

The day after Thanksgiving it happened. Placing a stethoscope on my belly, the nurse heard my bowels working. Permission was granted! An emergency call was placed to my mother in the waiting room to bring me a milk shake. This assignment was harder than one might think. Since it was still the Thanksgiving holiday weekend, everything in the hospital was closed. My mother remembered seeing a Carvel’s a few blocks from the hospital, so off she went with my brother. They returned with the largest milk shake I had ever seen (they told me they considered buying the next size up --“extra-extra large”). Each sip was a great effort, since I had to concentrate on swallowing properly. But those three sips I took were worth it! It had been almost two weeks since food passed my lips, and it would be another week before I would eat a complete meal. In the meantime, my weight dropped 25 pounds to 140 lbs.

The Last Night in the ICU

Just as I was getting ready to move out of the ICU, I took a turn for the worse. I had a fever, I was pale, and they suspected a urinary tract infection. The warrior in me had one last ICU battle to face. As the fever broke late in the night, and I was covered in perspiration, I felt that I had just won another battle.

Melody took very good care of me.

All the nurses who took care of me in the ICU seemed to give me that little extra care that really helps in one’s recuperation. I’ll remember them all, especially Dorothy, who worked so hard to make me presentable to my children; Tom, who prepared me for the post-surgical fight; Roselyn, who cared for me after surgery; and Mary and Melody, who watched over me at night after D. had gone home.

Melody loved to talk! She would talk all night to me! But this last night in the ICU was different. She knew the pain I was enduring, so she pampered me all night and tried to be quiet.

Although I wrote the note about Melody after that last night in the ICU, it could have been written about any of the nurses. The ICU nurses were like angels. I can never thank them enough for the comfort and care they provided me. God bless them.

Columbia Floor Nurses

In a distinct contrast to the ICU nurses were the regular floor nurses.

Nurse: please tell the nursing station not to ask “Can I help you?” when I beep. It is very frustrating that I can’t talk.

The nurses refused to come to my room when I pushed the call button, even though I rarely did so. About the only time I would beep them is when I couldn’t breathe and needed to be suctioned -- pretty life threatening! Instead of rushing to my room, they would ask me “Can I help you?” over the intercom system. Not hearing a reply (remember, I could not talk), they would turn off the call button and ignore me. This would be repeated even if I immediately beeped them again. More difficult than surviving surgery was my surviving the nurses on the floor.

Room with a View

My private room had a beautiful view overlooking the Hudson River and the George Washington Bridge -- or so I was told. I would become sick whenever I looked outside the large windows. Everything in my world was jumping up and down so fast, I would have preferred a room without windows.

In the ICU, there were strict rules about visitors and visiting time. Not so on the floor. Since I was in a private room, I could have visitors all day. My mother would arrive early in the morning, and stay with me all day. She sat at the foot of my bed (the only location I could keep in focus with minimal vertical jumping) and read articles to me from the Sunday newspaper. This was very soothing to me, much like a child being read stories by his mother.

Because I can’t talk, people may not realize how much I appreciate their visits.

I expressed this thought to D. on a few occasions. I really enjoyed the visits, from my mother who would stay all day, to the Bikur Cholim women (a group of volunteers who fulfill the mitzva of visiting the sick) who would stay a few minutes. It did not matter if they talked to me or just sat quietly. It was the fact that they came, even though it required fighting traffic in Manhattan, that meant so much to me.

The get-well cards from friends and colleagues at work that arrived daily were also appreciated, as were the phone calls people made to my relatives and friends to inquire about my progress.

I have a hard time keeping my eyes open.

My eyes really bothered me. I tried to keep them open so I would not be totally blind, but keeping them open caused headaches and was severely depressing. I could never have imagined seeing a world that shakes up and down very fast. But this is what I saw. Constantly. One night, as my head was pounding and my eyes were closed, D.’s sister D read an article from a travel magazine about beaches in Mexico while I let the cold water from the washcloth drip all over my face. I was back on my beach.

Which was worse: not being able to see or not being able to talk? Not being able to see was clearly the bigger obstacle, but not being able to talk was very frustrating. I attempted to use the phone a few times, using a toy that my brother D and his wife D bought for me. It was a miniature car steering wheel with a horn and stick-shift. I would use the horn on the phone to indicate yes and the clicking stick-shift for no. The only problem was getting people to ask only yes or no questions. D., in particular, would depart from yes or no questions, and I would be sitting there, staring into a phone with no way to communicate.

Another drawback was having a tracheotomy. Though I soon became comfortable with it, when the tube became clogged with phlegm, it was hard to breathe. I was told to try to use my strength to cough up the phlegm through my tracheotomy hole. One time, I did so well that the phlegm flew across the room, and hit the wall opposite my bed.

Dreams

On about the third night on the floor, I had a series of nightmares. I rarely dream and when I do, I don’t usually remember my dreams, but these nightmares woke me up and I wrote a synopsis of the dreams for my private duty nurse.

1st dream: if caught outside as the sun sets on you, you turn into a shadow and die. But there was a trick to prolong the sunset and not be caught. It involved a choreographed dance. If a group of “characters” danced together in such a way (which they did up and down trees) then they stayed in the sunlight. So the scary part actually became quite interesting.

2nd dream: This was at night. I kept finding myself caught in a “scene” with helicopters swooping down and spraying the area with bullets. Lots of death. Then I realized I was on a military base where the practice training had become quite real and everyone was being killed. Even the helicopters were crashing and I heard the people in them yelling as they fell to their death.

I was in the midst of my third nightmare, involving me in a strange vehicle being propelled down a mountain to my death, when the private duty nurse appeared in my dream asking me if I was OK. In reality, the nurse heard me having difficulty breathing and was waking me up.

The Worst Day

I had been lying in bed for ten days, continually asking to be seen by the neuro-ophthalmologist, and my frustration increased each day he did not show up. Finally, as I neared my last day at Columbia before being transferred to a special rehabilitation hospital, my neurosurgeon's secretary was able to get me an appointment to see the neuro-ophthalmologist. But there were two catches: one, I had to go to him in a different wing of the hospital, and two, the appointment was scheduled for one hour before the ambulance was scheduled to take me to the JFK Rehabilitation Center in Edison, New Jersey, reputed to be one of the best in the region.

The appointment is promptly at 9:00, so transport has to be here on time. At 10:00 the ambulance will take me. D. will be at JFK when I get there.

The transports that take patients from one room in the hospital to another in wheelchairs were notorious for arriving late, so the nurse made sure to request that the transport arrive early. The man arrived at 8:15 am, and by 8:30 had delivered me to the neuro-ophthalmologist’s office. There was just one problem. The office, located off the main lobby of the Eye Institute building, did not open until 9:00. So I sat in the lobby for a half hour, feeling very conspicuous in my hospital clothes as people entered the lobby.

At precisely 9:00 am, the doctor arrived, though he seemed puzzled to see me. It turned out that no one had told him that I was coming, and he was not prepared to see patients that day. I had assumed that he was expecting me, and I had neglected to take my pen and notepad. So it took a few awkward minutes for me to explain why I was there. I was then taken to an examining room while a resident read my medical chart (which by now was very thick). I watched the clock as the 10:00 deadline was fast approaching. After I was finally examined, another neuro-ophthalmologist came by and examined me some more. He had good news. Though my eyes were jumping so fast that I could not read the largest letter on the eye-chart, when my eyes were pointed straight down, the jumping stopped. With a set of prisms on my glasses, the eyes could be fooled into thinking they were pointed down all the time. The prisms, in effect, could stop the jumping. Needless to say, I was overjoyed. But first I needed to see another doctor, who would try various prism strengths. If I stayed, I would miss my 10:00 departure time, but I decided that my eyes took precedence.

Off I was pushed to another waiting room. As the wait dragged on, I realized that this had been the longest I had gone without a supply of humidity attached to my trachea tube, and without being suctioned by a nurse. This wing was not equipped as a hospital, and there was no chance of receiving either. I could feel my throat drying out, and my breathing becoming harder. I was also feeling very alone. There was no one else in the waiting room with me, nor could I yell for help. When the prism doctor finally appeared, I thought, “Just a few more minutes.”

She tried four different strengths of thick glass prisms. As they got stronger, the jumping became less, but they also blurred the vision more. None of the prisms worked perfectly, and I had to compromise between some jumping and some blurriness. She took plastic stick-on prisms of the strength I had chosen and attached them to my glasses with a little water. “It will take just a few minutes to dry,” she said, as she wheeled me back to the neuro-ophthalmologist’s lobby.

As I sat there and tried on my glasses, I became very depressed. The plastic prisms were worse than the glass prisms, and did not improve my vision. In fact, all they did was blur my vision! After spending an entire morning at the Eye Institute and missing my ambulance, I was back to square one. The neuro-ophthalmologist who had seen me came back and gave me my options: 1) glass prisms made especially for my glasses, which were very expensive and no guarantee to work any better than the plastic variety, 2) a very expensive drug that would have to be taken in small doses three times a day, with a side-effect that would make me groggy all the time, and 3) wait for an improvement, although again there was no guarantee that time would heal my eyes.

Then the doctor left and I waited alone for my transport to take me back to my hospital room. I was furious -- why couldn’t they have examined me and told me this in my room. I was depressed -- I had built so much hope on the doctor’s original words of encouragement, and now I was left with little hope. And I was sick -- I was very dry from the lack of humidity and I couldn’t breathe since my trachea tube needed to be suctioned and cleaned. I was also running a fever by now.

Take me back to my room quickly. I feel very sick.

I had borrowed some paper and pencil to write this note to give to the transport when he arrived. The trip back to my room normally would take fifteen minutes, but he heeded my note and shaved a few minutes off the trip. It was not without penalty. Moving fast was hard for me, with or without my eyes open, and the quick pace made me feel even sicker. When we arrived at my room, he left me at the door and said a nurse would be here to help me to my bed. After a few agonizing minutes I rolled myself near my bed, and dove to the other side with the little strength I had left to push the call button. This time, fortunately, a nurse came and I finally was suctioned and placed back on the humidity. I was then told that the ambulance driver was furious at my not being ready, but had reluctantly agreed to return later that day.

Thinking that the situation could not get any worse, I heard the ambulance driver and his assistant finally arrive outside my room. “Where is this JFK hospital anyway?” one guy asked the other. “Ask the patient, he’s from New Jersey,” replied the obviously wiser gentleman. Unbelievably, D. had anticipated these dolts, and left with me written directions and a map to JFK hospital. I handed these to the driver, who looked it over and said, “Oh yeah, I think I’ve been there before.”

Riding in the back of an ambulance on a stretcher, with my eyes jumping up and down, it was hard for me to follow the roads we were taking. But after being on the road for about an hour, the time it should have taken to arrive at the hospital, I recognized a bridge we were crossing on the Garden State Parkway, heading to the southern half of the state. We were traveling in the wrong direction! But I couldn’t speak and no one was watching me. I just closed my eyes and hoped the day would soon end.

They finally turned around and found their way to the hospital, but not before I was in need of another suctioning. I felt miserable when I arrived at the Rehab. Center. But I was glad to see D. waiting for me, and a nurse who looked capable of cleaning my trachea tube, which by now was almost completely clogged.

JFK - Beginning the Rehab

I need help getting my pajamas on and getting to bed.

When I think back to my month-long stay in the Brain Trauma Unit of the JFK Rehab. Center, I immediately think of my therapists, especially my occupational therapist, Anna, who was given the responsibility of teaching, coaxing and forcing me to regain my independence in what they call “Activities of Daily Living”, or ADL. During the first week of December, she assisted me in brushing my teeth, showering, and getting dressed. I could do none of these by myself when I entered the Rehab. Center. Those first days were very difficult, but my therapist applied just the right combination of encouragement, understanding, and pressure so that within a few days, I had made tremendous progress. I still remember the happy look in her face, when one day while she was testing my eye movements, my eyes stopped jumping for an all too brief few seconds.

My physical therapist, Jenn, was also able to take pride in my rehabilitation. I looked forward to the twice daily exercise sessions with her (very unusual, she told me, as most patients view the exercise as torture) for they gave me a chance to push myself under her watchful guidance.

My condition had greatly improved from the previous weeks at Columbia, and I was no longer in a life-threatening situation. Still, my family came often to visit. One of the most moving visits was on December 2, when L. and E. came. I had not seen them since the day before the operation; almost two weeks had elapsed. L. hugged me and sat on my lap, but she was clearly affected by all that had happened. She was very quiet, not wanting to express her feelings. And I was still unable to talk. But the hug she gave me told me all I needed to know at the time.

My being closer to home allowed my in-laws to visit more often, since with D. no longer commuting to a New York City hospital, they no longer had to spend as much time caring for our children. My brother J also relieved D. by coming in from Chicago and spending time with me during my first few days at JFK. He also started the process of putting some much needed fat on me. I remember the large box of donuts he brought for me, although I also recall that he assisted me in my eating therapy.

Still, with all my progress, it took me a couple of weeks to learn to walk. I can recall when I first arrived at the Rehab. Center, I noticed a row of wheelchairs. These were for the other patients, I thought, many of whom were in much worse condition than I. Imagine my chagrin the next day when into my room they wheeled one with my name on it.

I soon viewed the wheelchair as a wonderful tool. Now I had some mobility, and D. took me on a tour of the facilities. It was still hard for me to see clearly, but she described the rooms for me.

I tried to read magazines and newspapers, but the print is too small.

I’m not wearing my glasses. It would make me dizzier.

What do you think about the eye drug?

As one can tell from my writings, the foremost problem for me to tackle was my vision. Just as the therapists would try out new things each day, I tried new ways to try to overcome my vision problem. First I tried to force myself to read, hoping that practice would improve it. Then I decided that if my vision was bouncing, I might as well take off my glasses. Then I reversed that strategy and again tried to force my brain to overcome the bouncing by intentionally wearing my glasses and hoping for the best. The battle with my eyes was the most aggravating and headache-causing fight of the entire ordeal. I remember writing to D. about hypothetical discussions people have about which of the senses is the most important. Well, I had lost almost every one of them. My choice, by far, was vision.

I was getting ready to give up and subject myself to a medication the doctors were suggesting, when my eyes suddenly stopped jumping, exactly three weeks after the operation. No one is really sure why my eyes stopped jumping, but one guess is that the two systems -- the eyes and the brain -- finally figured out how to live with each other. For four weeks (it started a week before the surgery), my eyes were in over-drive while my brain was stuck. Then, miraculously, my brain finally clicked into the proper gear. Now I was able to notice another problem, double vision, but this was nothing compared to the violently bouncing eyes I had to endure. My prayers were answered.

The comments I wrote in my notebook about my eyes were written during my first few days at the Rehab. Center, for soon after I arrived there, the large tracheotomy tube was replaced with a smaller one, one that could be corked to allow me to talk. I tested the cork by reciting the first few letters of the alphabet, but my first sentence was “This is great!” It was such a pleasure to be able to talk again after not uttering a sound for close to three weeks. My speech was not perfect yet, since I still had trouble moving my tongue to all positions, but I could be understood.

With my vision and speech back, I now had a new mission. There was one thing I had to prove. All along, I was aware of every deficit, and I knew that the only functions affected by the bleed on my brainstem were motor functions (walking, talking, breathing, etc...). But as part of the process in the Brain Trauma Unit of the Rehab. Center, my cognitive skills were also tested. This assessment period, after a few days, began to annoy me. Although I was passing every test they gave me, the tests continued. I wanted to prove to them that not only were my cognitive skills unharmed, but that I was probably smarter than they, even after a month of sleep deprivation. After all, I knew enough about the brain and brainstem to not question my cognition. To prove to them that my level of intelligence was above average, I would make a point of reading The New York Times in the hallway and in my room, especially the Science and Business sections, and of listening to classical music on my radio (it was also soothing brain music, I thought, and good for my rehabilitation).

With my condition improving, I was granted permission to leave the hospital grounds for a few hours. One of my first visits was to my daughter’s school to attend her Chanuka play. I was glad to be able to return to the community that cared so much for me (daily prayers were said for me at my daughter’s school, as well as in the synagogues), and the smile on L.’s face when she saw me could have melted the coldest of hearts. But I was also scared. I was leaving the safe environment of the Rehab. Center, where everything was geared for the handicapped, to the untested environment of the real world. The friendliness of everyone at the school made me feel comfortable. No one stared as I was assisted from the car to the school auditorium, where a comfortable chair with arms was placed in front for me, or when I remained sitting while everyone stood for the national anthem. Nor did my trachea tube generate odd looks. Everyone was genuinely happy to welcome me back.

The experience of my next trip out was not as comforting. On a Saturday night, D. picked me up at the Rehab. Center and took me to see a movie with another couple. The movie was enjoyable (a comedy -- D. refused to see anything but a comedy) but after the movie, I had to go to the bathroom. At the Rehab. Center, I was still making use of the handicapped railings in the bathroom, and I had not yet tested my ability to urinate standing up (my legs were still weak). So I naturally entered the handicapped stall in the men’s room. It was obvious that this stall was not being used by handicapped people. The seat was stained with urine, since people had used this stall instead of waiting for a urinal. I stared at the seat, not sure what to do. I was sickened by the sight, but could not wait for my return to the Rehab. Center. I had no choice but to remain standing and test my legs. Fortunately, I did not fall. On my long list of letters I have been meaning to write but still have not, is one to the management of the movie theater, detailing my experience at their place of business.

Not all my experiences that month were as serious. Before the doctors would remove my trachea tube, they wanted to perform a sleep-study on me to make sure my breathing was perfect, even during sleep. The test consisted of my being wired up to a monitor during the night. One of the wires was connected to my head, and the technician shaved a chunk of hair from the front of my head. “It’s just a small, unnoticeable spot, easily covered up by the rest of your hair,” he assured me. The next morning, I was aghast as I looked into the mirror and saw the butchering he had done. The spot was as large as a baseball, and quite noticeable. I was not the only one furious. The resident doctor in charge of me phoned the testing center and told them never to touch the hair of one of her patients!

Meanwhile, I asked that the hospital staff barber stop by my room to re-style my hair to hide the spot as much as possible. Like in a scene in a bad sitcom, my room was changed that day, and the new patient in my room was not sure of the year, let alone if he had ordered a haircut. He probably thought a new haircut was part of the package in this hospital, and gladly accepted the free haircut. I am just sorry I missed the look of shock on the barber’s face when told she had cut the hair of the wrong patient. I eventually received my haircut, and she did a good job of hiding the shaven spot. It is a darn good thing that the surgeons did not make a similar error.

As I neared one month in the Rehab. Center, I began to get very impatient. I had progressed quicker than anyone had imagined and had reached the point where the day’s activities were too boring for me. It was now close to two months of being in hospitals, and I had reached my limit. I begged to be discharged, and after the doctor evaluated my condition and progress, my wish was granted on Tuesday, December 28, 1993.

Postscript

These words you have been reading are the thoughts that have been replaying in my mind like a song one can’t forget. Months after the surgery, I still find myself transported in time, back to the nightmare of it all. The other day, sitting in the park on a beautiful spring day, I became oblivious to the children playing, the birds singing, and the sun shining. Instead, I was back in the NICU before my surgery, reliving the fear of the day.

People constantly ask me, “How do you feel?” Though they mean well, that question makes me very uncomfortable, especially since the question is usually followed by the statement ”You look great.” But you want to know something? I always looked good; I never looked deathly ill. I couldn’t walk. I couldn’t talk. I couldn’t see. I couldn’t eat. I couldn’t feel with my hands... Still, I looked great, but felt miserable!

I concede that “How do you feel?” is a natural and common greeting, and I would probably feel even worse if no one said anything to me. Also, the people who ask me this question are the same people who prayed for me, visited me, made food for me, and provided me with transportation when I could not drive. It is not them I am upset with, it is the question. If only there was another way to greet me.

Perhaps there is. I was nervous when I returned to my synagogue for the first time after my illness. It was a tremendous emotional challenge to sit in the very synagogue where hundreds had gathered to pray for me, just a few months earlier. The congregants, however, did not make me feel uncomfortable with a barrage of “How do you feel?” greetings. Instead, I was welcomed with “Good to see you back!”, and “I hope you can continue to come.”

People think that I should feel wonderful because my life was saved and I am no longer in the calamitous condition I was in earlier. But I can not feel wonderful until I feel 100% better. Some of my doctors say that my remaining deficits will disappear within a year or two. Other doctors say I may be left with deficits for the rest of my life. Maybe I will feel wonderful in a year or so, but right now it is premature for me to feel wonderful.

Yet, when I am asked, “How do you feel?”, I wonder if people want to hear the truth? Yes, I feel lucky to be alive. I also feel like a battle-wearied soldier -- but the battle is not finished. As the day progresses, even now, five months after the surgery, I find it difficult to keep my balance, to keep my eyes focused, and to keep from slurring my speech. I continually flex my hands, hoping to wake them up from their sleep.

How do I feel? I feel emotions I could never express before. I see my son take his first steps and I see my daughter playing in the park, and I see the miracle of life. At Jewish holidays, when I recite the traditional blessing, “Blessed art Thou, Lord our God, King of the universe, who has given us life and sustenance, and brought us to this season.”, I choke on the words. How do I feel? I pray that you never know this feeling.

Harry H. Chefitz
New Jersey