"A GIFT AND A CURSE":

He was diagnosed with toxic progressive leukoencephalopathy, also known as "chasing the dragon syndrome", usually caused by inhaling the fumes from heroin heated on aluminium foil. An unknown toxin, probably something in the substance that had been added to the heroin to make it go further, was wreaking havoc in Jake's brain. There was no known cure or treatment, so he was sent home with a store of palliative medications.

Through the summer and autumn, Jake's symptoms worsened. His muscles grew weak and his limbs became contorted. At home, he fell over frequently and had trouble swallowing. He couldn't eat solid food and his speech became increasingly unintelligible.

In November, Jake was admitted to hospital and transferred to the neuroscience intensive care unit, where he was put on a ventilator and feeding tube. He suffered autonomic storms - a frightening constellation of symptoms sometimes seen following brain injuries. During a storm, the nervous system is in an overactive, disturbed state. Blood pressure rises, the body sweats profusely and spasms violently, breathing becomes rapid and shallow, and the heart might beat more than 200 times a minute. Jake would storm for four, eight, 12 hours at a time. "It was agonising to watch," his father, a plainspoken man in his early 60s, told me.

Jake was fighting for his life. He was scared, confused, sometimes hallucinating. Damage to the myelin, the protective sheaths surrounding nerve cells in the brain, progressed until he had no motor control, and could neither speak nor direct his eye movements. For the most part, he understood what was happening, but could not communicate. He could hear comments from nurses and doctors who believed him to be irreversibly brain damaged. Jake recalls an ER doctor observing him like a specimen to be dissected. "Oh, geez, this guy's so contracted," the doctor said, hovering inches above Jake's face. "It put me into more pain just hearing him talk about me like that," Jake told me. "Like I wasn't there."

Eventually, the storms lessened in severity, and he was moved to a nursing home. After a while he was offered palliative care at home, which is generally given to those with terminal illness. His father was told Jake was expected to die within weeks.

To outside observers, Jake exhibited no signs of awareness or cognition. "Is he in there?" his wife and father would ask the doctors. No one knew for sure. An electroencephalogram (EEG) of his brain showed disrupted patterns of neural activity, indicating severe cerebral dysfunction. "Jake was pretty much like a houseplant," his father told me.

They had no way of knowing Jake was conscious. In medical terms, he was "locked in": his senses were intact, but he had no way of communicating.

"I could do nothing except listen and I could only see the direct area in front of me, based on how the staff would position me in bed," Jake later wrote. The disease had attacked the cables carrying information through his brain and into his muscles, but had spared the areas that enable conscious processing, so he was fully alert to the horror of his situation. He struggled to make sense of this new reality, unable to communicate, and terrified at the prospect of this isolation being permanent.

Throughout, Jake maintained a clear sense of himself. He felt every jolt, twinge and spasm of pain. "I couldn't tell anyone if my mouth was dry, if I was hungry, or if I had an itch that needed to be scratched," he wrote later.

He was in constant pain, and was afraid of dying - but, worse than that, he feared being trapped in his body for ever.

For months, there was nothing for Jake to do but listen to himself think. His condition mirrored that of French journalist Jean-Dominique Bauby, who published a memoir in 1997 about his experience of locked-in syndrome, written by a transcriber interpreting blinks of Bauby's left eyelid. The title, The Diving Bell and the Butterfly, conjures the image of his body as a sinking tomb with an oxygen hookup, his mind a fluttering creature trapped inside. In 2007, the book was made into an award-winning film.

Since that time, medical experts have invented ways of communicating with locked-in patients (including a groundbreaking "brain-reading device"). They've also gained a deeper understanding of locked-in patients' mental states, with studies showing that a surprising number report a positive quality of life. For his part, Bauby struggled to find meaning in such a distressing experience. His memoir is an astonishing portrait of a shipwrecked mind. "Not only was I exiled, paralysed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish," Bauby wrote, "but I was also horrible to behold."

"I felt disgusting all the time," Jake told me. He received oxygen and food via tubes, and he was constantly drenched in sweat. His skin, sensitive to minor sensory changes, often burned. The autonomic storms, though less severe, raged on, gripping Jake in distressing spikes of heart rate, high temperatures and feelings of suffocation.

Back at home, Jake's world shrank to the space of his low-ceilinged room. After a few weeks in bed, he hit on a kind of internal back-and-forth, which became key to his survival. "Two voices, both my own," as he later described his often-frenzied inner dialogue.

"How are you doing today, Jake?"

"Oh, not bad, just waiting for my medication."

"Yeah, it's coming soon. Don't freak out. You're OK."

"I know, I'm trying not to freak out. Oh, God, am I freaking out? What's going to happen to me?"

"It's OK, just relax. You're good."

Jake's needs were many and constant. Carers, nurses and Ellen -turned him to avoid painful bedsores, kept him covered with quilts and squeezed pain medication and liquid food through his tube. Though they didn't know it, Jake had numerous "conversations" with them, too.

"I would interject all the time when people were talking around me. If one nurse asked another, 'Can he hear me right now?', I would shout in my head, 'Yes, I can hear you!'" Jake continued: "I loved when anyone would talk to me, even if they didn't truly believe I was 'in there'. One of the aides sang to me. Another said: 'Jake, you look like a Greek god.' I admit I did like that."

More than anyone, Ellen felt certain that he was fully conscious. She had an ability to look into his eyes and understand what he needed. He described her intuitions as "telepathic". According to Steven Laureys, a Belgian neurologist and expert on locked-in syndrome, "It has been shown that more than half of the time it was the family and not the physician who first realised that the patient was aware." Medical professionals, however, do caution that family members "see what they wish to see".

In Jake's case, the majority of his family and friends- were told very little about his health once he was home. Ellen was highly protective of him, isolating him from potential "bad influences" and insisting that he only occasionally receive visitors.

Jake helplessly witnessed heated arguments in the room where he lay. He could only stare straight ahead as bitter rows about his care echoed throughout the house. Today, Jake and his wife are estranged and no longer communicate, but he still credits her as his lifeline while he was locked in.

A psychologist would later tell Jake that his sustained awareness was a "gift and a curse". "I wanted so badly to tell everyone what I was thinking," Jake said. He endured a tremendous amount of guilt that he, a drug addict, had put his family through a nightmarish ordeal, and that the state had to foot an extraordinarily expensive medical bill likely costing millions of dollars.

Besides suffering constant discomfort and shame, his overwhelming sensation was of the hours crawling slowly by. "God dammit, the boredom!" he said. He worked out maths problems in his head and fantasised about being outdoors, playing games, having sex. He counted out 1,000 seconds, over and over again.

In his room at the nursing home, a clock on the wall hung just out of view. "That was like torture," he told me. Television offered solace, not just as entertainment but also as a means of tracking time. Jake figured out what network cable shows appeared on which nights. "I always wanted to know what time it was, what day it was, how long it had been," Jake said.

Then there were the early morning prosperity preachers. Most days, Jake would suffer a cold sweat between 5am and 7am. Televangelists often appeared on the local networks around then, when the time slots were cheap. Jake despised their histrionic ramblings, but had no choice but to hear them. "I would have to listen to a religious nut every morning asking for money," he would later write in a Facebook post. "I felt like I was in hell, like I was already being tortured, and these scam artists were torture on top of torture."

Jake was very down during this time, "thinking lots of depressing thoughts" and ruminating on the past. "There were days when I would think about my funeral for hours."

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