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Guardian Archive, Longreach. The

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Guardian Archive, longreach.com life

2:00

on the inside as a locked in

2:02

patient published in 2020. I

2:05

was drawn to this story because I'd wanted to

2:08

write an in-depth profile piece. So

2:10

I was actively looking for a

2:12

compelling personal story. And

2:14

I'd come across and ask me anything

2:16

interview on Reddit about locked in syndrome

2:19

in which a person is awake and

2:21

conscious, but cannot speak or move.

2:24

And I realized that the person who posted

2:26

the thread had actually recovered from this condition

2:28

and was now in a position to answer questions. So

2:30

at this point I knew I had to learn more.

2:33

I messaged Jake Kandel directly. And

2:36

at that time he was in a rehab hospital just

2:38

outside of Boston, Massachusetts. I

2:41

was in Rhode Island just one state over. So

2:43

I made arrangements to drive up and visit Jake.

2:46

We talked for hours about

2:48

his experiences, about his drug use,

2:50

his disease, his body gradually shutting

2:52

down, and then somehow

2:54

coming back to life. And the

2:56

details weren't captivating. I

2:59

was especially interested in the mental and

3:01

existential challenges that Jake faced. And I

3:03

felt strongly that I needed to tell

3:05

Jake's story. So

3:09

since 2020, when the piece

3:11

was published initially, the

3:14

opioid crisis in the United States has only

3:17

worsened. According to the CDC, the

3:19

number of overdose deaths involving opioids in 2021 was

3:21

10 times the number

3:24

in 1999. These drugs, especially

3:26

fentanyl kill more than 80,000 people a year. And

3:30

those who don't overdose are often

3:33

left in terribly

3:35

compromised situations like Jake's. On

3:38

a brighter note, new therapies are being

3:40

developed for individuals suffering from traumatic brain

3:42

injuries, including some fascinating

3:44

work in brain computer interfaces and

3:47

deep brain stimulation. So it

3:49

is an exciting time in the field of neurology. I

3:53

would just add that Jake continues to do well in

3:55

his recovery. He has a YouTube channel

3:58

where he documents his progress. two

4:00

weeks ago he posted a video

4:02

of himself hitting golf balls which is just

4:04

phenomenal. So it's

4:07

an amazing story and I remain really excited for

4:09

G. Welcome

4:13

to the Guardian Long Read, showcasing

4:15

the best long-form journalism covering culture, politics

4:17

and new thinking. For the text version

4:19

of this and all our long

4:22

reads go to the guardian.com/long read.

4:26

This audio long read contains strong language

4:28

and references to drug use. Is

4:32

anybody in there? Life

4:34

on the inside as a locked-in

4:36

patient by Josh Wilbur.

4:46

Jake Handel was a hard partying chef

4:48

from a sleepy region of Massachusetts. When

4:51

he was 28, his heroin

4:53

addiction resulted in catastrophic brain damage

4:55

and very nearly killed him. In

4:58

a matter of months, Jake's existence became

5:00

reduced to a voice in his head.

5:05

Jake's parents had divorced when he was young.

5:07

He grew up between their two homes in

5:09

a couple of small towns just beyond reach

5:12

of Boston, little more than strip

5:14

malls, ailing churches and

5:16

half-empty sports bars. His

5:18

mother died of breast cancer when he was 19. By

5:22

then, he had already been selling

5:24

marijuana and abusing OxyContin and opioid

5:27

for years. Like

5:29

a lot of kids at my school, I fell

5:31

in love with Oxy. If I

5:33

was out to dinner with my family at a restaurant,

5:35

I would go to the bathroom just to get a

5:37

fix, he said. He

5:39

started culinary school where he continued

5:42

to experiment with opioids and cocaine.

5:45

He hid his drug use from

5:47

family and friends behind a sociable,

5:49

fun-loving friend. Inside,

5:52

he felt anxious and empty. I

5:56

numbed myself with partying, he said. After

6:00

culinary school, he took a job as a

6:02

chef at a local country club. At

6:04

25, Jake tried heroin for

6:07

the first time with a coworker. Narcotics

6:10

are notoriously prevalent in American

6:12

kitchens. By the

6:14

summer of 2013, Jake was struggling

6:16

to find prescription opioids. For

6:19

months, he had been fending off the

6:21

symptoms of opioid withdrawal, which he

6:24

likened to a severe case of

6:26

the flu with an added feeling of

6:28

impending doom. Heroin

6:30

offered a euphoric high, staving

6:33

off the intense nausea and shaking

6:35

chills of withdrawal. Despite

6:39

his worsening addiction, Jake married his

6:41

girlfriend Ellen in late 2016. Early

6:45

in their relationship, Ellen had asked

6:47

him if he was using heroin. He

6:50

had lied without hesitation, but

6:52

she soon found out the truth and

6:54

within months the marriage was falling apart.

6:58

I was out of control, selling

7:00

lots of heroin, using even

7:03

more, spending a ridiculous amount

7:05

of money on drugs and alcohol, he

7:07

said. In May

7:09

2017, Ellen noticed that

7:11

he was talking funnily. His

7:13

words slurred and off pitch. What's

7:16

up with your voice? She asked him

7:19

repeatedly. On

7:21

the 21st of May, a highway patrol officer

7:24

stopped Jake on his way to work. He

7:27

was driving erratically, speeding

7:29

and swerving between lanes. That

7:32

morning he had followed his normal routine, smoking

7:35

heroin before brushing his teeth. It

7:38

was also normal for him to smoke

7:41

or free base heroin while driving, heating

7:43

the powder on a piece of foil and inhaling

7:46

the fumes. I

7:48

actually got pretty good at that, he told me.

7:51

As the officer approached his car, Jake could

7:54

feel that something was different in his body.

7:57

He needed to conceal the baggie of heroin, which

8:00

lay visible in the open center console, but

8:02

he couldn't reach over and close the compartment.

8:06

His arms flailed uselessly against the

8:08

dashboard. The police

8:10

arrested him for possession of a controlled

8:12

substance. Jake

8:15

made bail but could hardly walk out of

8:18

the station. In the next

8:20

two days, his condition deteriorated and, on the

8:22

24th of May, his wife

8:25

called an ambulance to their home. He

8:27

stumbled to the front door, leaning

8:29

on the walls to support himself. The

8:32

medical responders thought he might be having a

8:35

stroke, so he was rushed to hospital. Brain

8:38

scans showed an unmistakable imaging

8:40

pattern. Profound, bilateral

8:43

damage to the white matter, the

8:45

bundles of nerve fibers that facilitate

8:47

communication between different regions of the

8:49

brain. He

8:52

was diagnosed with toxic

8:54

progressive leucoencephalopathy, also

8:56

known as chasing the dragon syndrome,

8:59

usually caused by inhaling the fumes

9:01

from heroin heated on aluminum foil.

9:04

An unknown toxin, probably something in the substance

9:06

that had been added to the heroin to

9:08

make it go further, was wreaking

9:10

havoc in Jake's brain. There

9:13

was no known cure or treatment, so

9:16

he was sent home with a store

9:18

of palliative medications. Through

9:21

the summer and autumn, Jake's symptoms

9:23

worsened. His muscles grew

9:25

weak and his limbs became contorted. At

9:28

home, he fell over frequently and had

9:30

trouble swallowing. He

9:32

couldn't eat solid food and his

9:35

speech became increasingly unintelligible. In

9:39

November, Jake was admitted to hospital

9:41

and transferred to the Neuroscience Intensive

9:43

Care Unit, where he was put on

9:45

a ventilator and feeding tube. He

9:48

suffered autonomic storms, a

9:51

frightening constellation of symptoms sometimes

9:53

seen following brain injuries. During

9:56

a storm, the nervous system is

9:58

in an overactive, disturbed state. blood

10:01

pressure rises, the body sweats

10:03

profusely and spasms violently, breathing

10:06

becomes rapid and shallow and the heart might

10:08

beat more than 200 times a minute. Jake

10:12

would storm for four, eight, twelve

10:15

hours at a time. It

10:18

was agonizing to watch. His

10:20

father, a plain-spoken man in his early

10:22

sixties, told me. Jake

10:26

was fighting for his life. He

10:29

was scared, confused, sometimes

10:31

hallucinating. Damage to

10:33

the myelin, the protective sheaths

10:35

surrounding nerve cells in the brain,

10:38

progressed until he had no motor control

10:40

and could neither speak nor direct his eye

10:43

movements. For

10:45

the most part, he understood what was happening

10:47

but could not communicate. He

10:50

could hear comments from nurses and

10:52

doctors who believed him to be

10:54

irreversibly brain-damaged. Jake

10:56

recalls an ER doctor observing him like

10:58

a specimen to be dissected. Oh,

11:01

jeez, this guy's so contracted, the

11:04

doctor said, hovering inches above Jake's

11:06

face. It put

11:08

me into more pain just hearing him talk about

11:10

me like that, Jake told me. Like

11:14

I wasn't there. Eventually,

11:18

the storms lessened in severity and he

11:20

was moved to a nursing home. After

11:23

a while, he was offered palliative care at

11:25

home, which is generally given to

11:27

those with terminal illness. His

11:30

father was told Jake was expected to die within

11:33

weeks. To

11:41

outside observers, Jake exhibited no

11:43

signs of awareness or cognition.

11:46

Is he in there? His wife and

11:48

father would ask the doctors. No

11:51

one knew for sure. An

11:53

electroencephalogram, EEG, of his

11:55

brain showed disrupted patterns

11:57

of neural activity, indicating...

12:00

severe cerebral dysfunction. Jake

12:03

was pretty much like a houseplant, his

12:05

father told me. They

12:08

had no way of knowing Jake was conscious. In

12:11

medical terms, he was locked in.

12:15

His senses were intact, but

12:17

he had no way of communicating. I

12:20

could do nothing except listen and I could

12:22

only see the direct area in front of

12:24

me based on how the staff would position

12:27

me in bed, Jake later wrote.

12:30

The disease had attacked the cables

12:32

carrying information through his brain and

12:34

into his muscles, but it

12:36

spared the areas that enable conscious

12:38

processing, so he was fully

12:40

alert to the horror of the situation.

12:44

He struggled to make sense of this new

12:46

reality, unable to communicate

12:48

and terrified at the prospect of

12:50

this isolation being permanent. Throughout,

12:55

Jake maintained a clear sense of himself.

12:58

He felt every jolt, twinge and

13:00

spasm of pain. I

13:03

couldn't tell anyone if my mouth was dry, if

13:05

I was hungry or if I had an itch

13:07

that needed to be scratched, he wrote

13:09

later. He

13:11

was in constant pain and was

13:13

afraid of dying, but worse than

13:16

that, he feared being trapped

13:18

in his body forever. For

13:21

months, there was nothing for Jake to do but

13:23

listen to himself think. His

13:26

condition mirrored that of French journalist

13:28

Jean-Dominique Boubille, who published a memoir

13:30

in 1997

13:33

about his experience of locked-in syndrome, written

13:35

by a transcriber interpreting blinks

13:38

of Boubille's left eyelid. The

13:41

title, The Diving Bell and

13:43

the Butterfly, conjures the image of his

13:45

body as a sinking tomb with an

13:47

oxygen hookup, his mind

13:49

a fluttering creature trapped inside. In

13:53

2007, the book was made

13:55

into an award-winning film. Medical

14:00

experts have invented ways of communicating

14:02

with locked-in patients, including

14:04

a groundbreaking, brain-reading device.

14:08

They've also gained a deeper understanding

14:10

of locked-in patients' mental states, with

14:13

studies showing that a surprising number report

14:15

a positive quality of life. For

14:18

his part, Bobbie struggled to find

14:20

meaning in such a distressing experience.

14:23

His memoir is an astonishing portrait of

14:26

a shipwrecked mind. Not

14:29

only was I exiled,

14:31

paralyzed, mute, half-death, deprived

14:33

of all pleasures and reduced to the

14:35

existence of a jellyfish, Bobbie

14:37

wrote, but I was also

14:40

horrible to behold. I

14:43

felt disgusting all the time, Jake

14:46

told me. He received

14:48

oxygen and food via tubes, and

14:50

he was constantly drenched in sweat.

14:53

The skin, sensitive to minor

14:56

sensory changes, often burned. The

14:59

autonomic storms, though less severe,

15:01

raged on, gripping Jake

15:04

into stressing spikes of heart rate,

15:06

high temperatures, and feelings of

15:08

suffocation. Back

15:15

at home, Jake's world shrank to the

15:17

space of his low-ceilinged room. After

15:20

a few weeks in bed, he hit

15:22

on a kind of internal back-and-forth which

15:24

became key to his survival. Two

15:27

voices, both my own, as

15:30

he later described his often frenzied

15:32

inner dialogue. How

15:34

are you doing today, Jake? Oh, not

15:36

bad. Just waiting for my medication.

15:39

Yeah, it's coming soon. Don't

15:41

freak out. You're okay. I

15:44

know, I'm trying not to freak out. Oh,

15:46

God, am I freaking out? What's going to happen

15:48

to me? It's okay. Just

15:51

relax. You're good. Jake's

15:55

needs were many and constant. Carers,

15:58

nurses, and Ellen. turned

16:00

him to avoid painful bedsores, kept

16:03

him covered with quilts and squeezed pain

16:05

medication and liquid food through his tube.

16:09

Though they didn't know it, Jake had

16:11

numerous conversations with them too.

16:16

I would interject all the time when people

16:18

were talking around me. If

16:20

one nurse asked another, can he hear

16:22

me right now? I would shout in

16:24

my head, yes, I can hear you. Jake

16:27

continued, I loved when anyone would

16:29

talk to me, even if they

16:31

didn't truly believe I was in there. One

16:34

of the aides sang to me. Another

16:37

said, Jake, you look like a

16:39

Greek God. I admit

16:41

I did like that. More

16:45

than anyone, Ellen felt certain that he

16:47

was fully conscious. She

16:49

had an ability to look into his eyes and

16:51

understand what he needed. He

16:54

described her intuitions as telepathic.

16:57

According to Stephen Loury's, a

16:59

Belgian neurologist and expert on

17:01

locked-in syndrome, it has

17:03

been shown that more than half of the

17:05

time it was the family and not the

17:07

physician who first realized that the patient was

17:09

aware. Medical professionals,

17:11

however, do caution that family members

17:14

see what they wish to see. In

17:18

Jake's case, the majority of his family and

17:20

friends were told very little about his health

17:22

once he was home. Ellen

17:25

was highly protective of him, isolating

17:28

him from potential bad

17:30

influences and insisting that

17:32

he only occasionally received visitors. Jake

17:36

helplessly witnessed heated arguments in the room where

17:38

he lay. He could

17:41

only stare straight ahead as bitter

17:43

rouse about his care echoed throughout

17:45

the house. Today, Jake and

17:48

his wife are estranged and no

17:50

longer communicate, but he still

17:52

credits her as his lifeline while he was

17:54

locked in. bitterness

18:00

was a gift and a curse.

18:04

I wanted so badly to tell everyone what

18:06

I was thinking, Jake said. He

18:09

endured a tremendous amount of guilt that

18:11

he, a drug addict, had put his

18:13

family through a nightmarish ordeal and

18:16

that the state had to foot

18:18

an extraordinarily expensive medical bill likely

18:20

costing millions of dollars. Besides

18:24

suffering constant discomfort and shame,

18:27

his overwhelming sensation was of the

18:29

hours crawling slowly by. "'God

18:32

damn it, the boredom,' he said."

18:36

He worked out maths problems in

18:38

his head and fantasized about being

18:40

outdoors, playing games, having

18:42

sex. He counted

18:44

out one thousand seconds over

18:47

and over again. In

18:50

his room at the nursing home, a clock on the

18:52

wall hung just out of view. "'That

18:55

was like torture,' he told me. Someone

18:59

offered solace, not just as

19:01

entertainment but also as a means of

19:03

tracking time. Jake

19:05

figured out what network cable shows appeared on

19:08

which nights. I

19:10

always wanted to know what time it was, what

19:12

day it was, how long it had been,"

19:14

Jake said. Then

19:19

there were the early morning prosperity preachers. Most

19:22

days, Jake would suffer a cold sweat between 5

19:24

a.m. and 7 a.m. All

19:28

evangelists often appeared on the local networks

19:30

around then, when the time slots were

19:32

cheap. Jake despised

19:34

their histrionic ramblings but had no choice

19:37

but to hear them. I

19:39

would have to listen to a religious nut every

19:41

morning asking for money. He would

19:43

later write in a Facebook post. "'I

19:46

felt like I was in hell. Like

19:48

I was already being tortured and these

19:50

scam artists were torture on top of

19:52

torture.'" Jake

19:55

was very down during this time, thinking

19:58

lots of depressing thoughts. and

20:00

ruminating on the past. There

20:03

were days when I would think about my

20:05

funeral for hours. Thanks

20:17

for listening to the Guardian Long Read. The

20:20

story continues right after this. In

20:24

Norway, a woman's boyfriend forgets who

20:26

she is overnight. In Detroit,

20:28

a man is arrested, but he was never at

20:31

the crime scene. In Spain,

20:33

disturbing pictures of young girls have appeared,

20:35

and no one knows who's behind them.

20:38

Something strange is happening. A

20:40

collision between people and artificial

20:42

intelligence. Discover more

20:45

in the Guardian's new series, Black Box.

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Welcome

21:54

back to the Guardian Long Read. After

22:06

six months, Jake had lived longer than

22:09

the state had expected he would and

22:11

could no longer receive at-home palliative care.

22:15

Medical staff still had no idea if he

22:17

was conscious, but his vital signs were stable

22:19

enough that he could be moved. He

22:22

was admitted to Massachusetts General Hospital

22:24

in Boston for reevaluation in May

22:30

In the days following his readmission,

22:32

Jake began to feel increasingly hopeful

22:34

about surviving and even recovering. In

22:39

late June, he noticed that he could

22:41

exert very limited control over his eye

22:43

gaze, just enough to shift his

22:46

vision up and down. I

22:48

thought to myself, this is new,

22:50

Jake said. Control

22:52

of eye gaze can be the

22:54

first stage in recovery of nonverbal

22:56

communication, but at first it was

22:58

inconsistent. So although staff

23:00

noticed the flickers of motion in his

23:02

eyes, they still couldn't know

23:05

for certain if he was consciously directing them.

23:08

It was incredibly discouraging to hear from

23:10

the doctors over and over its

23:12

involuntary movement. There

23:14

were times when I felt like I was

23:16

hysterically crying on the inside, Jake

23:19

told me. Jake

23:22

showed no emotion in his face, his

23:24

father said. It was hard

23:26

to imagine he was in there. On

23:29

the 4th of July 2018, Jake had a breakthrough. That

23:34

night, from the hospital's 22nd

23:36

floor, Jake could hear,

23:38

but not see, the Independence Day

23:41

fireworks over the Charles River. I

23:43

thought to myself, I'm going to

23:45

see those things again, he said. The

23:49

next day, Jake's primary care doctor noticed

23:52

a very slight movement in his right

23:54

wrist. He darted

23:56

to the bedside. Do that

23:58

again if you can, his doctor said. said, move

24:01

your wrist. Jake

24:03

suddenly found that he didn't have to think about it. His

24:07

wrist simply moved. The

24:09

movement was minor but it was a sign that

24:11

his body was waking up. His

24:14

doctors were shocked. The

24:17

joy Jake felt was indescribable. Within

24:22

days he managed to blink in response

24:24

to questions. After

24:26

a week he was transferred to the

24:28

brain injury unit at the Spalding Rehabilitation

24:31

Hospital across town. Spalding

24:33

is an impressive facility in a

24:36

sleek, modern building. Regularly

24:38

ranked as one of the US's best

24:40

hospitals. In

24:43

the weeks that followed, Jake underwent a shift

24:45

in his thinking. He

24:47

started repeating a string of positive phrases

24:49

to himself. You can do

24:51

this. You're gonna make it. I

24:54

just really want to get better, he said. With

24:57

effort, he was beginning to move his

24:59

neck and tongue. I

25:02

was so freaking excited, Jake told

25:04

me. Soon he

25:06

achieved a crude system of communication. Tongue

25:09

out for yes, blink for no.

25:13

Michelle Braley, a speech therapist

25:15

at Spalding, was surprised to be working

25:18

with a patient previously considered terminally ill.

25:22

When I read his chart, I remember thinking, what's

25:24

this guy doing here? I

25:26

had never seen a case as dire who

25:29

became a candidate for rehab. Braley

25:32

helped Jake learn to communicate

25:34

non-verbally, starting with a simple

25:36

letter board. As Jake

25:38

gained greater control over his gaze, Braley

25:41

brought him a device called the Mega-B,

25:44

a tablet that allows patients to use

25:46

eye movements to pick letters and phrases,

25:49

which then show up on a screen. Jake

25:52

cried frequently, spelling out those first

25:54

messages, elated to pose questions

25:57

that had plagued him for months. Am.

26:02

I. Still. Going.

26:04

To. Die, he

26:08

asked Rebecca Glass, a physical

26:10

therapist at Spalding, during one early

26:13

Megabees session. She

26:15

looked up from the Megabees screen. I

26:18

don't know what the future holds, she said, but

26:21

I don't think so, Jake. Around

26:25

this time, Ellen was still visiting every day.

26:28

She had always insisted that he was still there,

26:31

and now Jake could finally express his

26:33

gratitude. Once

26:36

he could communicate, hospital staff could

26:38

evaluate his progress. I

26:41

did a cognitive assessment to see if

26:43

there was impairment as a result of

26:45

the leukoencephalopathy, Rayleigh said. It

26:48

was at that point that I realized

26:51

that Jake knew exactly what was going

26:53

on. Again, the

26:55

staff were stunned. They

26:57

had suspected he was aware to some

27:00

degree, but Jake could answer every question,

27:02

about his condition, about his

27:04

past, clearly. How

27:07

the brain repairs itself following

27:09

traumatic injury or progressive disease

27:11

remains mysterious. In

27:13

recent decades, though, scientists have learned

27:16

much more about how new neural

27:18

circuits are formed and how different

27:20

areas of the brain are recruited

27:22

to recover lost function. I

27:25

asked Seth Herman, a brain

27:28

injury specialist at Spalding, how

27:30

it was possible for someone like Jake to recover.

27:33

He cited the brain's ability to transfer

27:35

functions to different areas. The

27:37

brain wants to heal, to change

27:39

itself and form new neural pathways,

27:42

he said. Repetition

27:44

is key, and Jake was willing to

27:46

put in the work. A

27:50

team of physical and occupational

27:52

therapists spent weeks manipulating Jake's

27:54

muscles and using casts to

27:56

realign his limbs and improve his

27:58

range of movement. Gains

28:01

were modest but significant. The

28:04

autonomic storm subsided over

28:06

time. Jake grew

28:09

stronger. Jake

28:12

left Spalding in September

28:14

2018 and continued his

28:16

rehabilitation at Western Massachusetts

28:18

Hospital. For the next few months, he

28:20

remained confined to his bed and a

28:22

wheelchair, but he was moving

28:25

again, interacting with people

28:27

and gaining confidence. By

28:29

spring 2019, after intensive

28:32

therapy, he was speaking again.

28:35

First vowel sounds, then

28:37

simple phrases like I

28:39

love you and thank you, and

28:42

later full sentences. He

28:45

made video calls to family and friends who

28:47

hadn't known his whereabouts for months, ecstatic

28:50

at the opportunity to say, surprise,

28:53

I'm alive. During

28:56

Jake's time at Western Mass, Ellen

28:59

grew increasingly distant. By

29:01

the summer, she had stopped visiting. In

29:04

May 2019, Jake made

29:07

a last-ditch effort to save the relationship,

29:09

organizing a movie date. A

29:12

recreational therapist got him into a van and

29:14

took him to a nearby cinema. Ellen

29:17

met him there, and the therapist settled

29:19

the couple into an empty row and left them

29:22

alone. They saw Breakthrough,

29:24

a 2019

29:26

film about a teenage boy recovering from a

29:28

coma. They held

29:30

hands as they watched scenes of

29:33

disintegration and recovery. They

29:35

were both emotional leaving the cinema and

29:38

agreed to video chat later that night. But

29:41

he says she didn't answer his call, and

29:44

he hasn't seen her since. Locked-in

29:53

syndrome is rare. Estimates

29:55

say there are only a few thousand in the

29:57

U.S. at any one time. Most

30:00

sufferers are victims of stroke or

30:02

traumatic brain injury, and

30:04

very few regain significant motor function.

30:09

Jake is one of few to emerge from

30:11

a locked-in state, and doctors

30:14

describe his recovery as remarkable and

30:16

unique. Although MRI scans

30:18

continue to show signs of damage to

30:20

his brain's white matter, he has

30:23

recovered the power of speech and

30:25

hopes to walk again soon. I

30:28

first met Jake in February this year, at Tewksbury

30:31

Hospital, an aging, austere

30:33

facility outside Boston. It

30:36

was eighteen months since he had regained the

30:38

ability to communicate, and, as he

30:40

told me via text message, his

30:42

speech had improved drastically in recent months.

30:46

I navigated long, sterile hallways

30:48

to a pink-walled room, in

30:51

which he sat alone, upright in

30:53

bed, and eager to talk. Although

30:56

his limbs remained contracted and stiff,

30:59

Jake was quite animated, a powerful

31:02

personality emerging through hazel eyes

31:04

and a wide-searching face. He

31:07

and I are close in age, both in our

31:10

early thirties. He greeted me

31:12

with a warm, ''How's it going, man?''

31:16

I was taken aback by his cheerfulness. He

31:19

is self-conscious about his new laugh. Before

31:22

he got ill, it was deep and loud. Now

31:25

it's high-pitched and breathy, but

31:28

he chuckled constantly, even

31:30

when describing his darkest moments. He

31:33

spoke in slow, plodding sentences

31:35

and swore in the disarming, down-to-earth

31:38

manner of someone who doesn't take

31:40

himself too seriously. ''Wanna

31:43

see my scar?'' He

31:45

adjusted his shirt to reveal a gaping hole

31:47

where his feeding tube had been. He

31:50

told me that when the tube was removed

31:52

in May 2019, it popped

31:54

out violently, like a great

31:56

catharsis. The

31:58

doctors say it's looking good. might

32:00

be totally healed in a few years. I

32:05

used to be so anxious and depressed, Jake

32:07

told me. He was propped

32:09

up by pillows, gesturing grandly

32:11

with twisted hands. But

32:14

after everything I've been through, things

32:16

just don't seem so bad. Personality

32:20

changes after brain damage or injury are

32:22

well established in the medical literature and

32:25

Jake is convinced he has changed. In

32:29

some ways he's still the same old Jakey,

32:32

his Aunt Varda told me. In

32:34

other ways he feels like a completely different

32:36

person. He has such

32:38

a positive attitude now. After

32:42

meeting Jake, I spoke to his father by

32:44

phone. He sighed

32:46

and said that drugs had put his son in

32:48

a terrible place. In

32:51

his recovery though, he's become

32:53

the man I wanted him to be. I

32:57

asked Jake's uncle, a radiologist, if he

32:59

had a theory about how Jake got

33:01

better. On a

33:03

superficial level, he got the shit scared out of

33:05

him and decided he didn't want to die, he

33:07

said. Neurologically, I

33:09

have no explanation. Perhaps

33:13

there's functioning at the molecular level that we

33:15

simply can't detect on an MRI. Maybe

33:18

it had something to do with who Jake is.

33:23

Jake is adamant that his condition

33:25

improved because of a mental breakthrough,

33:28

a shift in his mindset after months of

33:30

being locked in. I

33:32

reached a point where I was like, fuck

33:34

this, I'm going to recover. I

33:37

thought about nothing else for weeks, he told

33:39

me. Since

33:42

the mid-20th century, there has been ongoing

33:44

debate about the role the mind plays

33:46

in healing. Jake's

33:48

uncle, who for six months felt

33:51

like a ghost in a broken

33:53

machine, remains convinced that

33:55

he managed to think himself

33:57

better. In

34:04

April, a US Army medical

34:06

task force was deployed to Tewksbury

34:08

Hospital to address a sudden spike

34:10

in coronavirus cases. Hundreds

34:13

of patients and staff tested positive.

34:16

More than a dozen died. On

34:19

the 12th of April, Jake woke with a

34:21

high fever, his muscles

34:24

spasming uncontrollably. The

34:26

doctors presumed he had COVID-19 and he

34:28

was rushed to Mass General. "'Because

34:31

of your medical history and weakened

34:34

autonomic system, there's a strong chance

34:36

we'll have to intubate you,' his doctor told

34:38

him." Once

34:40

again, Jake felt like a medical

34:42

specimen as masked nurses hurried him

34:44

into a waiting ambulance. In

34:48

the pulmonary unit at Mass General, with

34:50

his oxygen levels dropping, Jake

34:52

pondered death. He

34:55

went to sleep that night expecting to be

34:57

tubed in the morning. I

34:59

was terrified of going on a ventilator.

35:03

Being put under and traked, having

35:05

a tracheotomy, was my biggest fear.

35:08

I wasn't sure if I could go through it again. Jake

35:12

woke up hungry at sunrise. Friggin

35:16

starving, he said. He

35:18

made a rapid recovery and was discharged

35:20

back to Tewksbury in a matter of

35:22

days. In

35:25

the following weeks, Jake noticed improvements in

35:27

his overall condition. The

35:30

weakness and numbness in his feet had vanished.

35:33

His knees and legs felt more flexible. Most

35:37

dramatic were the changes in his voice. His

35:40

monotone drone evolved into something

35:42

more expressive, with better

35:44

inflection and intonation. Am

35:47

I crazy or is my speech way better

35:49

after having COVID? He asked

35:51

Philip Song, a laryngologist. This

35:54

is bizarre, right? Everything

35:57

about your case is bizarre. told

36:00

him. The effects

36:02

of COVID-19 in patients with

36:04

pre-existing neurological conditions remains poorly

36:07

understood. In December,

36:10

Jake will undergo a series of brain scans

36:12

at Mass General. His doctors

36:14

there hope to learn more about what

36:16

impact, if any, COVID might have had

36:18

on him. Though

36:21

Jake isn't allowed visitors at Tewksbury,

36:23

where lockdown measures remain in place,

36:25

he keeps busy, recording videos

36:28

warning viewers about the disastrous effects

36:30

of heroin use and

36:32

offering unique insight into the

36:34

day-by-day process of recovering from

36:36

a debilitating brain disease. In

36:39

a recent video, filmed on his

36:41

32nd birthday, Jake sits in

36:44

front of balloons and a Halloween pumpkin,

36:46

delivering a message of hope. I

36:49

know there's a lot of craziness going on in

36:52

the world with the COVID pandemic, but

36:54

I just wanted to say, stay

36:56

positive. Please be grateful

36:58

for those you have around you and

37:00

what you've got. It's

37:03

so important to be able to communicate with

37:05

people, Jake said to me in

37:07

February. It's the most important

37:10

thing in the world. For

37:12

years, he was shut off from other

37:14

people, consumed by the

37:16

physical feelings that drugs brought on. What

37:19

brings him joy now are moments

37:22

of connection. At

37:24

the end of one of our meetings, Jake

37:27

asked me a curious hypothetical question. Would

37:30

you rather be able to walk without a mind

37:33

or think without a body? Jake

37:36

spoke in a rush before I could formulate

37:38

an answer. I

37:40

would choose my mind over my body. Even

37:43

after being locked in, I would

37:46

still choose my mind. For

37:50

more Guardian Long Reads in text and

37:52

a selection in audio, go to theguardian.com

37:55

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