PART I — Facing Death
In April of 2004, the Angel of Death paid me a visit, and gave me a close brush. As it turned out, he was not there to reap, but to teach.
My ordeal began with a mild heart attack, which resulted in emergency bypass surgery when uncontrollable clotting disrupted a “routine” catheterization.
When they attempted the catheterization, my blood started to clot uncontrollably, and it was only the skill and dedication of the surgeon in an emergency operation, which saved my life. It turned out that I had an undiagnosed, hereditary predisposition to clot easily, which was further complicated by a hospital error.
Due to an oversight, I was continued on heparin for two days after I tested positive for heparin antibodies. Statistically, the presence of heparin antibodies doubles the likelihood of fatal clotting. Making for a “perfect storm,” the new, drug eluting stents which they used were recalled a couple of weeks later when they were implicated in an unusually high rate of clotting and death.
On the forth day after the operation, I was recovering and almost ready to go home when spontaneous clotting clogged the bypass grafts, and after a touch-and-go four hour operation, I ended up in a coma, on life support, for three weeks.
My kidneys failed. I was on dialysis, intubation, and a heart-assist pump: barely hanging on. Although I appeared to be unconscious and insensate; in my own world my mind was active, and I was very much aware how close I was to dying.
Perhaps because of the continuous sound of bells and whistles – hospital noises – I thought I was being held captive as a political prisoner in the hull of a ship. Some staff members had ignored my wife’s instructions not to play the television, so that accounts of Abu Ghraib – the breaking story at the time – probably fed my delusions of captivity and torture. Intravenous feeding left my mouth and throat parched, so that in my heavily-sedated, delusional world, I believed that I was being deprived of food and water in order to try to break my spirit.
No matter what, I knew that I would never give in.
I felt that my will was indestructible, and because of sheer determination, I would not die. My son at the time was 13, and I very much wanted him to have a live father, at least until he became old enough to be on his own. My responsibility as a father, more than anything else, kept me determined to live.
But when I weakened and breathing became a struggle, I felt that my captors were intentionally depriving me of air. Up until then, my goal was to stay alive, and I had been certain that I would succeed. But now that I was struggling for air, I realized that, no matter how strong my resolve, if the burden became great enough, my strength would be overcome, and I would die.
Still, I was not willing to allow my captors to control the outcome. So I changed the criteria to put victory entirely in my control.
Until then, staying alive in the face of this attempt to torture me to death had been my goal. But now I realized that my captors had the power to kill me, and there was nothing I could do about that. I also knew that their real purpose was to destroy my sense of self-worth and get me to believe that I deserved this treatment. So, despite the fact that I could not stop them from destroying my body, I knew with certainty that they could never get me to give up my belief that I am a person worthy of life.
I could barely gasp my next breath, and I knew that I would die within minutes.
But I was certain that, somehow, my son would know that his father never gave in, never collaborated with his captors, and that this would be important to him. Although I would not be alive as he grew up, I felt that his knowing that his father had died with courage would be my last gift to him.
I knew that I had about a minute and a half left to be alive. I lost consciousness.
Much later, I drifted back to awareness. My mind was thinking. Then, I realized that if I am thinking, I must still be alive. I was amazed! How could I still be alive? I figured it was a fluke that I was still holding on, and I expected it not to last too much longer.
I knew that I would die in a few minutes, but in my stubborn struggle, I decided that I would hold on as long as I could. If it were a matter of dying now, or a minute from now; I would focus all of my strength, and do whatever it would take to stay alive for a few extra moments. I fully accepted the inevitability of my imminent death; but I did not consent to it. Although I accepted death, I was not going to cooperate in any way.
While this was going on in my world; my wife, son, and my wife’s sister, Stephanie, who had come up from Virginia Beach to lend her support, were vigiling by my bedside. The phone rang. It was my brother, who had just arrived in Brattleboro with his family. It was a Friday night.
My brother told Stephanie, that they were tired and would stop at a motel and in the morning drive the final hour to the hospital. Stephanie replied: “If you want to see Steve alive, you better come right over. He may not make it through the night.”
Part II – Turning Point
My friend and business associate, Terence Sellaro, was shocked when he saw me on life support. Much later, he told me: “You looked bloated, like road kill which had been lying in the hot sun for five hours.”
The doctors had a conference with my wife, Donna, in which they tried to prepare her for what was coming. One of them (who probably could benefit from sensitivity training) seemed to be annoyed that she was not getting it, and told her: “You should be making arrangements.” They told her that it was time “to think about making a decision.”
Later at a second conference, they again broached the subject and asked if she would give permission to terminate life support. Donna told them: “My mother always said, ‘where there’s life there’s hope.’”
In general though the doctors and staff were incredibly supportive, even making sure that my wife and son had lodging. Although the records indicate that, “there were unfortunately no [vegan] dietary options for the wife in the Cafeteria at this time, she was referred to the Lebanon Co-op.” When I read my hospital records now, even though they are formal documents, the compassion and concern for my family comes through. They desperately hoped to save my life, and they were worried about my wife and son.
The doctors were clearly pessimistic, but they fought hard to give me every possible edge, being diligent to maintain the flow of oxygen to my brain. Several times my heart stopped, and I was immediately defibrillated. Twice, when I had become very weak, I was given transfusions.
Later I found out that at times my coma was medically induced. It was necessary to keep me sedated because otherwise I became agitated, and I even tried to pull the breathing tube out.
The line between dreaming and waking consciousness eroded so that there was no longer a distinction. When my eyes were closed and I seemed unresponsive, I was actually aware of what was happening around me, although my understanding of it was distorted. Even when my eyes were open and I could perceive my surroundings, I was simultaneously somewhere else.
Perhaps the continuous bells, whistles, and other hospital sounds seemed nautical, because most of the time I thought that I was being held prisoner in the hull of a ship.
At times, from the shore, I thought I saw a Jewish cruise ship (blue stripes on the hull with the star of David on a white background) which periodically arrived and departed. I boarded the ship once, but left before it began its journey. Later, when I was able to talk again, my wife reminded me that we had recently seen an Israeli film about a cruise ship filled with the souls of the dead. She said that if I had stayed on the Jewish cruise ship when it embarked: I would have died.
As I drifted seamlessly between worlds, various people would appear and fade away. I saw two women with coffee cups who were cleaning the room. I thought we were in a restaurant after hours, and I wished they would give me some coffee, but they did not seem to notice that I was there.
I saw nurses, and tried unsuccessfully to get their attention. I hoped they could help me escape, or at least get word out that I was captive. Although I could see them, they showed no sign of noticing me. I began to wonder if I were a ghost, present but invisible. I now realize how important it is to talk to a patient, no matter how unaware the patient may seem to be.
I knew that my brother and his family were coming, and I also knew that I was close to death. In my delusional world, my brother’s family was an Indian tribe, and if I could only hold out until they got there, their powerful magic would save me.
I knew they were close because I heard a rhythmic “tap…tap…tap” as they tapped their magic sticks and sang powerful chants, walking slowly with a commanding air, coming closer and closer. Later, my wife told me that the tapping I described must have been the sound of the heart assist pump.
Vividly I saw my brother’s tribe arrive. I saw each one of their confident faces as they filed by. I saw their bright, clean, ornamented shirts.
In the “real” world, my brother is a dedicated Christian, and he prayed hard for me, as did his wife, sons, and members of their church. Over that weekend, my brother prayed fervently at my bedside. My grown nephew, Russell, prayed to God, and pleaded with me not to give up. They had arrived on Friday. On Sunday, for the first time in three weeks, my family saw me open my eyes.
I caught my son in my gaze, stared at him, and – they tell me – I gave him a big smile! I looked at him like that for about 20 seconds, and then I closed my eyes again.
In my world, I recall having been captive in the hull of the ship for a long time, isolated, deprived of food and water, and then seeing my son in the ship. I was amazed to see him, and could not understand how he got there.
Before that weekend, the doctors had given me very little chance to survive. But now they told my wife they were, “cautiously optimistic.”
Part III – “Brooklyn, 1909”
One morning soon after I had been transferred out of intensive care, my wife, Donna, who (with my son, Leif) was staying in a room provided by the hospital, received a call on her cell phone.
It was the ICU nurse, Wayne Lannon, who said: “Hurry, come right over!”
“Is anything wrong?”
“No. Just come on down.”
When Donna and Leif arrived, she found that my breathing tube had been removed. This was a surprise, because the physicians had been sure I needed a tracheotomy, and had scheduled the operation for later that day. But Wayne had convinced the doctors to give me a chance to breath on my own.
With Donna at my bedside, Wayne instructed me to breathe slowly and deeply. Donna then looked me in the eye, and asked: “Are you going to breathe slowly and deeply?” I hate to be told what to do, so I shook my head, “no.” This stubborn and stupid gesture was a great relief and comfort to my wife, because it meant that I was returning to my normal self.
When the tube was first removed, they continued to feed me intravenously and would give me no water, fearful that I might choke. I was literally begging for water, but still I could not help making a joke. With my weak voice, I said to a nurse: “If you give me some water, I’ll vote for George Bush!” The nurse did not look amused…perhaps she was a Republican.
My world was a blend of dream and waking perception. For example, I thought that Donna and I had gone to a police station to speak with the attorney general of New Hampshire. We had important information that he needed. I truly believed that this had happened. Later, when I asked Donna: “Are we going to talk with the Attorney General again?” she became concerned about my mental state.
It did not help any when a doctor, evaluating me, asked if I know where I am and what year it is, and I replied: “I am in Brooklyn. It is 1909.”
Later, when I found an entry in my hospital records stating that I was disoriented, and, “thought he was in … a police establishment and could not identify us as physicians,” I realized who the “attorney general” was. He was a neurologist, who (according to my records) had asked me if I could identify objects, such as a box of Kleenex, a pencil, a straw, etc. That was the “important information” the “attorney general” needed!
Before permitting me to drink, a nurse told Donna that she could give me limited amounts of ice to suck on. When the nurse was gone, I told Donna that the nurse had said I could have as much ice as I wanted, and Donna allowed me to con her.
The next day, a nurse came by to give me my first drink. She asked if I wanted ginger ale or water.
“Give him water,” Donna, the purist, said.
“Ginger ale,” I said with my weak voice. I was not going to miss an opportunity like that!
The first sip tasted powerful. I could feel the ginger ale coursing through my body and into my extremities. My body did not seem whole to me, and I felt as if the ginger ale might leak out of my joints.
When I became able to ingest solid food, my appetite was absent. I drank, but I hardly ate. I had lost nearly 30 pounds, but food tasted dry and uninteresting.
During the day, I enjoyed speaking with whomever came by. I was visited by the Protestant Chaplain, and I managed to throw her a curve ball by citing the right-to-know provision of the Patient’s Bill of Rights, and asking her: “Who is in charge of this room?”
The drugs distorted my thinking, and when Donna tried to tell me that I owe a debt of gratitude to Nurse Lannon, I warned her, “Don’t trust him!” I told her that I knew “what he was really up to.” (I had misinterpreted some normal procedures.)
The nights were long, mostly sleepless ordeals, during which I was haunted by nightmarish visions of ships where horrors took place.
Donna’s best friend, Rhea, came for a week to give support. I recall talking to Rhea and Donna, sitting on an island with the sun shining, seeing stone steps leading down to the water’s edge, where the Jewish cruise ship was docked. All three of us recall the conversation, but the setting for us was different: They thought they were at my bedside in the hospital; I saw that we were outdoors, on the island.
At times, a group of muscle men came to lift me from the bed so that I could sit on a chair. One time I got impatient waiting for them, and attempted to get off the bed myself, only to be surprised by how weak I had become. My legs buckled, and the impact of my fall struck an intra-arterial needle.
They had to sedate me, and place a sandbag on my chest to stop arterial bleeding. I thought that I had gone into a restaurant run by bears, ordered tea and honey cake, and had ended up on the floor when the bears attacked me. In this waking dream, a group of Russian soldiers had entered the restaurant just in time to rescue me. (No doubt, the “Russian soldiers” were hospital staff.)
No matter how bizarre my delusions, I totally lived in their reality. There was no sane part of me standing aside, realizing that my thinking was strange.
There were a lot more delusions. And there were strange, inexplicable experiences, such as my being able to describe accurately to my wife places in the hospital which I could not have seen. Apparently my astral body was wandering around
Part IV – Recovery
A week after regaining consciousness, I was transferred to Grace Cottage in Townshend, noted for its friendly and homey atmosphere.
My health was fragile. I was confused, and told a nurse that I had been homeless for the past couple of months and had been wandering the streets in Brooklyn.
Dr. Backus — whom a few months later was named Vermont Medical Society’s Physician of the Year — and the rest of the staff treated me with dignity. The kind treatment I received at both Dartmouth and at Grace when I was vulnerable and defenseless meant a lot.
During the few days that I had spent at Brattleboro Memorial Hospital, the nurses had also been incredibly protective and supportive.
The fact that Dartmouth-Hitchcock is a very large facility, Grace Cottage is very small, and BMH is somewhere between; shows that it is not size, but the spirit in which a hospital is run and the caliber of the rank and file, that determines whether the patients will be treated with love and respect.
My first night at Grace Cottage, a nurse, Conn Rose, spoon fed me like a baby. I was still uninterested in food, but figured I would force myself to swallow it anyway to reciprocate Conn’s patient care.
The next day, the head of food service came to my room.
He said that getting back enthusiasm for food is an important element of recovery. Because my wife had requested vegan food for me, he made a point of telling me that, regardless of what was on the menu, I should let him know what I want. Access to suitable food was important, but the real boost to my morale was knowing that the head chef cared enough to go out of his way for me.
Later I was told by Mary Gyori, Director of Development, that as a result of our encounter, the chef had enthusiastically attended courses in vegan food preparation.
After five weeks in bed, I had lost muscle tone and needed help just to stand up. I struggled with edema and congestive heart failure. My time at Grace was spent relearning to walk, and even doing simple things, such as buttoning a shirt. The first time I put on my own shoes, it actually took an hour. Severe illness had infantilized me, and now I was like a child, literally learning to tie my own shoes.
I suppose life support is analogous to being in the womb, and the removal of the breathing tube was like cutting the umbilical cord. So my experience was like being born again and revisiting the journey to adulthood.
About halfway through my stay at Grace, I was transported to BMH for an echocardiogram. When the car taking me pulled up to the entranceway, an elderly gentleman came with a wheelchair. I was surprised at how strong he seemed, and felt confident in his care. (I later found out that he was a 93 year old volunteer.) On the trip back to Grace, as we turned a corner I caught sight of my house – the first time in almost two months. So close!
After 3 weeks in Grace Cottage, I was discharged, and driven home by my old friend, Wally White. When he came to the hospital, Wally prayed for me, asking for cleansing of the blood. During that prayer, I saw two vibrant strands: One was red, the other was golden. Later I asked Wally if he had prayed for purification of my physical blood, or if he had meant “the blood” spiritually. “Both,” he said.
Home was completely familiar, but after so long away; it seemed strange to be there. At first, I would sit on the couch for hours, not reading, not talking, not listening to music: satisfied just to be home.
Gradually, I got back to work, and after a few months I was admitted to the Cardiac Rehab Program at Brattleboro Memorial Hospital where the emphasis is on exercise and stress reduction. And, if you could get past the aroma of eggs smothered in melted cheese, butter, and bacon coming from the hospital cafeteria down the hall, the instructors would recite warnings about the risks of cholesterol. The program helped me get my strength back.
Prior to my hospitalization, I had experienced some difficult challenges, including some frightening events for which I felt I had not received much emotional support. I had cynical thoughts about whether love is real, or if people just pretend to care about one another because of what they want from each other.
But when I was ill, the outpouring of support was without limit, and had nothing to do with self-serving gain. We found ourselves surrounded by people who were ready to help in any way they could. Friends took care of our house and pets. Business colleagues covered for me. My wife and son had no trouble getting rides. Later I found out that even strangers were praying for me in churches, synagogues, at a yoga group, and even at Realtor® meetings.
The devotion of hospital staff – not just medical people but even a cleaning woman who gave me words of encouragement – was remarkable. the nurses never let on when they were exhausted, but continued to give their best. It was clear that it was not simply a matter of putting in the required hours and punching out: The hospital workers I encountered are on a mission of love.
When I asked my wife why there seemed to be such a contrast between the lack of support I felt previously, and the response to my illness; she said that people do not always get it when a person has an emotional need, but a serious illness is an unmistakable crisis which people understand and respond to.
I realized that when people do not seem to care, it may not be indifference, but rather that they do not understand how much their love is needed.
It was a terrible ordeal to put my family through, but from my brush with death I learned something very important: There is more love in this world than anyone can ever imagine. I hope no one else will need to go through such an extreme experience in order to realize that love is real.
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