Locked In

James Hall is one of 35 people to experience a documented pontine stroke—a stroke that leaves a person's mind trapped in a body that is dead. Once brash, cocky and philandering, Hall enjoyed the high life, but all that changed in an instant. In fact, after his stroke, his life was nearly terminated by his physicians, who believed he was brain-dead. Was he really alive? Friend and colleague Patton Howell, Ph.D., helped reveal that Hall's mind was fully functioning. Here is an account of his stroke and the days following it.

On the morning of April 11, 1991, James Hall didn't wake his wife to say goodbye. In fact, he hardly noticed her. Looking through his closet, he picked a designer Harris tweed suit and coordinated tie. Leaving his rambling ranch house in fashionable North Dallas, he drove his Jaguar to his psychiatric offices. There, he called the manager of his West Texas ranch, saying he would be out in a few days to oversee the year's branding of cattle. Later, he was on the LBJ Freeway to the airport.

During the flight, he sensed that something was wrong. He had just made it to the men's room when he vomited. Maybe he had had too much alcohol.

Getting the rental car was a chore as usual. The gearshift seemed awkward; he felt disoriented. This was not his Jag. Something felt urgent. What is...? Hospital! Had to find a hospital. It was hard to read the signs.... Where was he? Lost. A truck stop loomed ahead. He parked the car somehow and dashed through the rain. It was late at night. He needed to urinate badly. Where were the rest rooms? He found them just in time. Now he must ask for directions. He approached the girl behind the counter. She seemed frightened.

Did he look as if he were going to rob her?

“I am just lost,” he tried to explain, and his words became a jumble .

She looked at him with alarm. He couldn't even understand himself; he stumbled off. The rain had become a slow drizzle as he fumbled to unlock the car. He drove off into the strange black night.

Suddenly there was a loud ringing in his ears. He spotted a graveled shoulder, pulled over and leaned his head back on the car seat. The ringing didn't go away. Ahead through the slow rain he saw what looked like an official building of some kind. The ringing got louder; he eased the car across the highway and stopped in front of the building. Legs. The legs. Head. Pain, pain, pain, pain.

Locked in

Susy, James' wife, answered the phone at five the next morning. Someone from the Akron, Ohio, hospital told her that Dr. Hall had had a serious, life-and-death stroke. Susy flew to Akron. At the hospital, she was greeted by a visibly embarrassed doctor, who told her that another woman was already there taking care of James. Susy said, “Then, in that case, she can have him.” Later, the other woman left the hospital; she was not coming back. A few days later, a former patient of James' provided a private airplane that flew James home to Dallas.

Back home, Susy called me for help. The staff of the Dallas teaching hospital had assigned James his own suite. I approached the door and leaned my head against it for a moment and tried to prepare myself. Susy slipped out and thanked me for coming. Inside, it was like breaking into a sepulchre. The room was absolutely still. It had the atmosphere of an empty room, as if no one were alive. I approached the bed slowly and contemplated James' body. His skin was cold. It had no resilience. His body was like a laid-out corpse.

Think of someone's face—even in sleep there are subtle signs of awareness of the outside world, imperceptible movements around the eyes and mouth. The skin has a radiance that reaches out and touches you. When a person is dead, that radiance disappears. The tone of life is gone.

I reached over and pushed the skin on James' face. Nothing. I pushed the flesh of his shoulder. It was like pushing a shoulder of beef at the grocer's; no response, no tingle of life. Suddenly my hand darted out to the carotid artery in James' neck. Yes, his body was alive.

Problems of the brain and mind were my field and one in which I have written extensively. I began pacing the room, waiting for Bill Moore, a colleague and friend of ours, to arrive.

Bill always looked as though he would be more comfortable outdoors. He had overseen the training of two generations of psychiatrists at the Southwestern Medical School here in Texas. Bill was known to be a mountain of strength in crises such as this, but now he appeared pale and haggard. The reports of his old friend's condition left his eyes brimming with pain.

This was the classic Locked-in Syndrome. The statistical chance for survival was one out of 10. More than that, what was the chance of a meaningful life without his body? The statistics on this hardly gave James a chance.

The lack of tone in James' face implied that the stroke must have occurred in the pons area. I showed Bill the sketch I had made: an artery split in the midbrain by the pons. Apparently there was a blockage, probably cholesterol, in the artery, which caused the split. Not only did brain cells die from the lack of blood, but they were traumatized by the pressure of blood leaking from the split artery. I guessed that this midbrain pons area had been wiped out along with much of the lower cortex.

Bill recalled an experiment with decorticated cats. He told of how each cat's cortex was removed by cutting through the nerves and separating it from the lower brain, which remained functioning. Removing the cat's cortex guaranteed that there would be no neural impulses from its higher brain. The decorticated cat's body would just lie there living, immobile unless stimulated. And when they put a decorticated cat in a cage with other cats, it was as though the healthy cats thought of it as dead.

Bill's point was that overworked doctors and nurses might have similar reactions to James. We would have a new syndrome—the Decorticated-Cat Syndrome.

I remembered one locked-in case in which the neurosurgical team said that, unfortunately, prolonged survival was possible. Notice the word unfortunately. It was the Decorticated-Cat Syndrome in action.

Doctors talk about the “awesome” nature of a locked-in patient's inability to move or communicate and how the family and hospital staff begin to feel hopeless and incapacitated in the presence of the patient. As Bill and I spoke, we too slipped into the same behavior. We were talking beside James' apparently dead body instead of trying to communicate with him. Where were our emotions of grief and pain? They were inside us, but we couldn't be ruled by emotions when trying to save a life. Could we? But Bill and I were not emotionally dead.

So this was our plan: Bill and I would first try to protect James from the caregivers who might turn against him, as in the Decorticated-Cat Syndrome. Second, we would attempt to learn to think like James, to share his own thoughts with him even though he could not communicate them himself.

Breakthrough

Bill and I puttered about, setting up three stands, one on each side of James' bed and one directly in front of him.

I taped flash-card letters to a frame on the left stand; “James, if you look left, it will mean that you want one of the letters on this frame. Then we will point to each letter, and you will signal the correct one by fixing your eyes on it when we point to it. If you want a letter in the center group or the right group, just look that way.”

At that moment, a young therapist with dark, shining hair came in. He strode up to look at our work and tried to stifle a laugh. “How interesting,” he said. “Good morning. I see what you're trying to do. Actually, I have this small transparent plastic panel with six groups of letters set into it, which I can see through as I point to the letters. Much more efficient, don't you think?”

He took one elegant finger and pushed aside the frames I had set by James' bed. “I'll show you how we do it.”

An hour later, he rose to leave. “As I expected, there is no apparent cognitive functioning, certainly no linguistic capacity.”

Bill said, “Leave the plastic panel.”

“I've just demonstrated that there's no need for it.”

“I suggest you leave it.”

“Very well, Dr. Moore. I'll just report to the department head that it's in your care.”

Bill picked up the plastic panel. “It is a little neater than our system.”

Thirty minutes later, Bill and I (pretending to be James) had managed to decipher only three letters: Y, O and U. And we had misunderstandings of letters in between. We were hot, sweaty and irritated.

I stood up over James and took my coat off. “James, let's do it. Bill, you handle the board, and I'll write down the letters.”

James' eyes seemed to be focused on me, then they shifted way over to the left, away from the stands.

“Come on, James, look at the board. We can do it—do something anyway, even if the message is fragmentary.”

After a struggle we did get a word: T H E. Bill and I celebrated with a couple of Cokes.

For a moment I was overwhelmed with the reality of James' condition. Then, clearing my throat, I said, “Well, let's continue. I am expecting something breathtaking from your mind.”

The next letter was R.

The next, M. I thought, “Ah, the mind of James, the Jungian-world authority on dreams, has some fabulous insight on rapid-eye movements in sleep but has left out the E. He means REM.”

The next letter was O. The next, S. Then T.

“Bill, if you leave out the R as being a mistake, you have T H E (R) M O S T. Let's go for it.”

The next letter was A. The next, T.

“All right! THE MOST AT. The most at.... Where are the most at, James? Tell us.”

James' eyes rested on me for a moment, then slid off to the left.

“He can't finish the sentence, Bill. Maybe it never was a sentence, just nonsense. He's probably tired. I certainly am. I have to go, and I know you do, too.”

Bill said, “James, we'll hit it again tomorrow,” and left.

I noticed the sun would soon be down and stayed by the bed with my hand on James' forehead, thinking he might have some feeling there. I felt depressed and disheartened. We were running out of time before James was condemned to death.

Salvation

In the early-morning hours, the sound of a telephone ringing woke me. I groped for it.

Bill's voice was on the other end. “Not `the most at.' Remember the R we dropped? `Thermostat.' ”

“Thermostat! How obvious. How could I have been so stupid? Do you remember, Bill? There was a thermostat on the wall to James' left. When I stood up to take my coat off, I was right in front of his face. He would have seen how hot and sweaty I was. He sent thermostat—a clear, logical, impeccable message. He was concerned, first, about my comfort. How like him.”

Bill answered, “I expect James was angry with us. We failed him. He is probably very depressed.”

I dialed Susy at the hospital: “Susy, hallelujah! I have a message for James.”

“Pat, it's five o'clock in the morning. Are you all right?”

“I'm fine—sorry to wake you. But please go over to James' bed, be sure he's looking at you and say one word to him: thermostat.”

In the hospital later in the morning, I spilled some champagne on James' forehead: “I'm drinking this toast for you.”

Bill, Susy and I clinked glasses.

Bill took the bottle and said, “Let's remember that we have received only one word from James so far, and we didn't handle that one very well. If James doesn't send a strong, clear message that he wants to live, the hospital will find an opportunity to let him die. We have to get the transmission of a complete sentence down, letter-perfect.”

Bill bent over to look into James' eyes: “I suggest the sentence, `I want to live.' That would be definite and something we could handle without a fatal mistake. Also, if your eye movements don't work out perfectly, I can fudge a little since I know what you're going to say.”

The door banged open and another speech therapist entered with two interns bringing up the rear. Bill was standing in the middle of the room with his mouth open, holding the bottle of champagne in his hand.

“This is not a good day to question Dr. Hall,” he said.

The speech therapist responded in disgust, “No alcohol in the hospital, as you know.” Then he hunched forward to peer at James' dead, expressionless face. The two interns were huddled near the door, looking apprehensive. This had the macabre atmosphere of putting a dead man on trial.

Bill cut in smoothly, “I suggest that we allow Dr. Hall to transmit a message on these panels we have here.”

The therapist said, “I have been authorized to make a final determination here. Why don't we use the plastic spellboard approved by my department? The question is `Do you want to live?'” He thrust it in front of James' face.

Bill moved to the therapist's side. “Good,” Bill said. “You hold the board, and I will use the pointer. Is this the group of letters you are looking at, James? Good. Now, is this letter to which I am pointing the one you want?” James' eyes were floating around as he blinked. “No. This one? No. How about this one?” For a second, James' eyes seemed to focus. “Yes, it is the letter I.”

The next letter was D. The message was supposed to be “I want to live.”

I was thinking, “Why doesn't Bill fake it, help James to stay with the message? Yes, Bill is trying to suggest W, but James keeps bringing him back to D. This is not the time to get confused, James.”

The next letter was E.

The next letter was M, then A. I D E M A—30 minutes spent on just five letters already. Time was running out.

Then N, then D. I DEMAND. Come on, James, don't try to be smart.

Then T and O. Then L and I and V and E. I DEMAND TO LIVE.

But more letters were coming: an A, an S, another S.

The next letter was an H, then and O an an L....

The therapist dropped the board.

Bill picked it up and said, “Let's see what the next letter is.” E.

I DEMAND TO LIVE ASSHOLE.

I shouted, “He has risen. Hallelujah!”

The Ouija Spellboard

Now James could finally communicate with us directly. He had his plastic spellboard going 24 hours a day and was driving everyone crazy. James wanted to do nothing but communicate constantly. I dropped the spellboard on James' bed and rubbed my sore hands. I hadn't yet made the transition from believing James' mind was functioning to being hit in the face with the reality of it.

I sighed and said, “Don't read it aloud, Susy. Let me read it to myself.”

Susy reluctantly handed over her husband's message, looking as though she wasn't sure she could trust me with it.

I've been thinking 24 hours a day since stroke. Afraid not to. Mind unraveled when didn't. Didn't see much at first but could soon hear everything. When U said something I would reply, no one heard. Repeating conversations to myself kept mind together.

This was like getting messages from someone who had “passed over.”

Here is what I was thinking from the time of the stroke. Silence. Blackness. Not breathing. Touch. Nothing to touch. Up or down. Nothing to feel. Where are legs, hands. Nothing to feel. No pain. Senses gone. Dead. Hear sounds with no source can see. Not clearly. Ceiling. Slides past. Fuzzy. Can't focus. Whiteness. Is this death?

No! Don't want to die. Can't believe this. I'm somewhere between life and death.

To prove it. Will now tell U what U were saying. Exact words. Pat said I'm like a drowning man holding onto life preserver. Right?

I plopped down in a chair and closed my eyes. What had I said? Yet the phrase about the life preserver rang in my memory. Yes. I had said James was like a drowning man holding onto a life preserver.

The spellboard urged us on

Go back to when my colleagues met in my hospital room to plan how to murder me. What I heard in different pontifications was: Kill! Kill!

Tell them they're wrong, Pat, before it's too late. Don't let them kill me! God! Don't let them kill me!

Pat, find that stupid paper I wrote and destroy it.

I exclaimed, “Then what we've really been discovering all this time is that the mind can do without a body.”

Me. I'm the proof.

Bill said to the air, “Who are you besides a haunt, or a ghost?”

Mind has own energy. Nothing but pure consciousness. Have all the time there is. Have absolutely nothing else to do.

Now, 11 years later, Hall is the longest-living pontine-stroke victim. Recently, Psychology Today visited him in his Dallas home where he lives with Susy. Hall communicates through a computer. He can transmit letters by typing with an extension on one finger, or by focusing on particular letters that the computer picks up from his eyes. He has regained some movement in his head, takes in baby food instead of strictly liquids and counts to 50 in a hushed whisper.

In this confined state, Hall contemplates the meaning of happiness and what we can learn from a man without a body: “In some ways, my stroke was a blessing. It ended a destructive pattern of alcohol and sexual addiction that was spiraling out of control. Since my stroke, I've published books, articles, poems. I'm busier and happier than I have ever been.

“For both Susy and me, these years are golden. Since my stroke, I am more deeply embedded in life, less afraid of death, more focused, more open. Love is more important than accomplishment. It is better to discover, not `choose' goals. Honors are contextual. Nowadays, who wants to be a general in the Imperial Russian Army? `Evil' depends on the definition of `good.' Everything, including God, is evolving.

“The Buddhist concept of Anatman is correct: There is no enduring self-sufficient self. `I' is the name of a small figure in an immeasurable cosmic tapestry. Yet the moment I write this, I recall Basho's poem written on the death of his infant son: This dewdrop world. It is a dewdrop. And yet. And yet.”

Patton Howell, Ph.D., is a diplomate of the American Board of Psychological Specialties. James Hall, M.D. is a former psychiatrist and Jungian analyst.

Adapted from the book Locked in to Lifeby Patton Howell, Ph.D., and James Hall, M.D., with the permission of Tea Road Press.