Dead to the world

“Limb by limb – block by block – the lights went out”: Richard Marsh. Photo: Winni Wintermeyer

When Californian fitness fanatic Richard Marsh suffered a severe stroke, his doctors urged his wife, Lili, to consider switching off his life support. Unbeknown to them, however, he could hear – and understand – every word they were saying.

It was a Wednesday. I didn’t expect to die that day. No one expects to die on a Wednesday. I was a 60-year-old high-school teacher and I’d never felt better. Working part-time gave me the freedom to ride my Harley, read, play guitar and tend my vegetable garden – all great solitary pastimes. My health meant everything to me. I cooked my own produce, I avoided saturated fat and fast food, and I worked out every day in the gym, as I had for more than 40 years. I’d even met my wife, Lili – a nurse at Napa Valley Hospice – working out. I had a nice, comfortable life; a safe life.

At 4am on Wednesday, May 20, 2009, I was dead to the world. The first thing I noticed as I stirred was the smell of coffee wafting across the open-plan living area. I smiled. Lili must be back from the gym.

Still standing: Richard Marsh and his wife, Lili. Photo: Winni Wintermeyer

Showering is undoubtedly one of the great modern pleasures but, on this particular morning, as I stared through the steam into the bathroom mirror, I realised that something wasn’t right. I wasn’t right. I searched my mind for what the problem might be. I must have had the shower too hot again. The scorching water often triggered a short bout of light-headedness. But as I doused my baby-smooth face with cold water, I realised there was nothing familiar about the sensation I was feeling today. I wasn’t light-headed. I wasn’t nauseous. I felt no pain. But something was wrong.

“I’m feeling …” I paused, searching for the right word. “I’m feeling weird.”

“Why don’t you sit down?” Sit down? Yes, why don’t I do that?

When she leaned down to kiss me goodbye, I still felt in control. I could see the picture window opposite and hear the traffic filtering past the house as people made their way to school and work. Then Lili closed the front door behind her and my whole world fell in.

The second that door shut, I could no longer make out the photographs of Hawaii on the wall or lift my legs onto the small footstool next to the sofa. I couldn’t even make out my own feet in front of me. I had a very bad feeling about what was happening. Some silent assassin was in the room with me.

I managed to get to my feet and felt the earth spin. A headrush can happen to anyone who stands too suddenly, but this was much worse. I flicked my hand out to the wall. Instinctively I knew I couldn’t balance. My legs felt like they would give way any second. I needed Lili.

I could see the telephone on the desk in the dining area, about 4.5 metres away from where I was standing. On a normal day I could be there in under five seconds. I focused on my right leg and told it to move. I felt it swing forward about 15 centimetres, but it was lumpen, heavy, like it didn’t belong to me at all. When I tried to move my left leg, it wouldn’t budge. My weight was spread across my right leg and my hand on the wall. I knew then the only way I was going to be able to move was if I let go of the wall. I pushed my hand against the wall and used the momentum to swing my left leg forward … then my right, then my left, then my right. I was moving.

I retained control over my legs just long enough to reach the desk and collapse into the chair. It was a huge relief to learn that whatever was wrong with me did not seem to be affecting my fine motor skills. I flicked through the phone’s directory and quickly found Lili’s work number.

“Rich, are you all right?”

“Lili,” I slurred. “I think I’m having a stroke.”

In my previous job as a cop, I’d followed enough ambulances to the Queen of the Valley Medical Center – or “The Queen” as its staff called it – to recognise the route we’d taken. “He’s stable,” my paramedic called out to attendants as the back doors of the ambulance opened and daylight flooded in. “But he’s shutting down. Fast.”

There had been moments during the short journey when I’d felt back in control of my limbs. I could wiggle the fingers on my right hand and twitch my toes just by looking at them. But that seemed like an age ago now. As we’d hit Trancas Street, I wasn’t even thinking about the destination. I was only thinking about what was happening to me.

It started with my left foot. One minute I could move my toes, the next I couldn’t. My left leg followed, then my right foot, then that leg. My left arm had been lost from the start but now my right joined it. It was like my entire body was powering down. I could still feel everything – the bumpy ride, the coarse straps across my chest, the IV tube in my hand – but I couldn’t react. I’d seen movies where the lights turned out across a city, block by block. That was exactly how I felt. Limb by limb – block by block – the lights went out. Inch by inch, nothingness spread over my body.

We were in the trauma room. The same doctor from emergency who’d sent me for a CAT scan stood in front of us. His eyes behind their glasses flicked between mine and Lili’s, then towards another man. He introduced him as a neurologist. It was his job, the doctor said, to explain the results of the scan.

“They mostly confirm what we thought,” the neurologist said. “Rich, you’ve had a stroke. A very large one.” He paused. “Now, a lot of people make a full recovery from strokes. But, I have to warn you, most of those strokes are nothing like yours.”

“What’s the difference?” Lili asked.

“Strokes are caused by a lack of oxygen to the brain,” he said. “Most are brought about by a clot, or thrombus. This is called an ischemic stroke. The other type is a haemorrhagic stroke, where an artery bursts and floods the brain with blood. You’ve had an ischemic stroke. In very few cases, no more than 10 per cent of all strokes, people can get a clot in the central – or basilar – artery. This artery connects directly to the brain stem. But this does not always lead to a stroke. The basilar has two minor arteries that feed into it. A clot in one of these will slow down your blood supply, but the other channel should be able to cope.”

He was now building to the meat of the matter.

“Unfortunately, Richard, our scan has shown that you do not have two functioning minor arteries. One of yours is a dead end – it does not lead anywhere. And, because your clot is in the other one, there is nowhere for the blood to go.”

“Why hasn’t this affected him before?” Lili asked.

“There’s no reason why it should have. A surprising number of people have this condition and go through life without it ever being an issue.”

“Are you saying he was born like this?”

“Almost certainly,” he said. “It’s only come to light now because of the clot. Damage in the basilar area is usually not survivable. Because of that, the risk of operating here is too great. But there is a drug that could help. It’s a type of TPA – tissue plasminogen activator. Its name is Activase, but we call it the ‘clot buster’. ” [TPA is a protein involved in the breakdown of blood clots.] It worked, the neurologist explained, by diffusing the clot, but it had to be administered within three hours of the stroke occurring. “Do you want to go ahead with the clot buster?” he asked.

I tried to say “Yes” again, but nothing happened. At least I was still able to nod. Immediately the neurologist started moving. Time, he said, was against us.

The neurologist wasn’t the only person on the go. As he ran from the room, the original doctor called a nurse over. “Listen to Richard’s breathing,” he said. “He’s struggling to manage his secretions.” I’m what?

The nurse nodded. “He’s struggling to get air,” she said. “I think the diaphragm is shutting down.”

“Yes,” the doctor agreed, looking straight at me this time. “I’m afraid we’re going to have to intubate.”

I felt my arm being lifted and the skin rubbed. This time I knew they were preparing it for a needle so I looked across to Lili. I didn’t need to see the needle piercing my skin. Unfortunately, I couldn’t avert my ears, so I heard exactly how crucial it was for them to get it into me … now! Everything went black.

The taste of rubber. It came back to me like a lightning bolt. I hadn’t been able to breathe. My mouth had filled with saliva and I couldn’t swallow. This had to be some sort of pipe. What else could hurt in so many places at once? I felt it touching my teeth, in my mouth and down the back of my throat. This hurt like hell. It was like having a burning flame forced down your throat. Every breath made me want to gag. Every single inhalation made me want to scream. But I couldn’t gag. I couldn’t scream. In fact, I couldn’t do anything.

Gingerly, I opened my eyes. Or did I? They’d opened, but I didn’t really know why. Did I make them do that or did they do it of their accord? I needed to find out. I had to discover whether I still had the power to control my own eyelids.

I tried to close them again. Nothing. I tried to blink. Still nothing. I felt the heat of panic rising in my body again, but that was something I could control. At least in part. I told myself there was no point worrying about blinking now. I just had to be grateful I could still see. It was better to be trapped in the light than in the dark.

As the panic subsided, I realised I was looking forwards – not upwards at the ceiling. The bed itself was on a tilt so my upper body was higher than my feet. The angle wasn’t great, but it gave me a view of the room and there was plenty to take in. I knew the pair of feet protruding from the end of the bed, those 10 toes, were mine. No question. So why didn’t they budge when I tried to move them?

Still, nothing was more disturbing than not being able to manipulate my own eyelids – or eyeballs, for that matter. These felt as if they’d been glued into their sockets. I couldn’t make them pivot right or left, up or down. It was terrifying.

I consoled myself with the thought that Lili would be excited to see me awake. That alone would tell her I was recovering, on the mend. A couple of strides brought her directly in front of the dresser. I could have cried as she looked me in the eyes. “I’m awake!” I tried to shout. “I’m okay!”

I knew nothing would come out of my mouth, but my eyes, my face, my whole soul were hollering the same message. She stared at me for a few seconds, then turned round to face someone who was standing behind her. “Still no change,” Lili said.

I recognised the second person as Pat, Lili’s colleague from the hospice. They stood at the end of my bed, looked at me, then turned back to each other. “I’m so sorry, Lili,” Pat said.

“So am I, Pat.”

“But Rich is a fighter. He’s strong. They’ll pull him through this.”

“I hope so, Pat, I really do.”

She didn’t sound very sure. If anything, she looked close to tears. I couldn’t understand why she was so upset. I was wide awake, listening to every word and studying every expression on her face. Couldn’t she see that? Couldn’t Pat? They were both healthcare professionals. Surely they knew when someone was trying to communicate with them, didn’t they?

I watched them continue their conversation. I still heard every word but now I couldn’t take much in. The longer they stood there, the longer they chatted, the more depressed I became. It wasn’t only that my own wife couldn’t hear me: she wasn’t even aware I was awake. The darkness beyond the window told me it was definitely well into the night now. I had no idea exactly how much time had passed, but I did know that Lili needed to go home, too, if only to get some sleep and freshen up.

She leaned over, kissed me on the cheek and hugged me tight. That much I liked. I only wished I could have responded in a similar way. But then she pulled back, squeezed my hand again and, staring deep into my unblinking eyes, said, “It’s okay to go, honey. Don’t worry about me. I’ll be all right.” After one more kiss, she turned and left the room.

Lili had given me her blessing to die. She wasn’t thinking about our long-term future, about our marriage, about us. Why had she said goodbye? I was in a bad way, but I was getting better, I knew that. Or if I wasn’t yet, I soon would be. What had given her the idea that my time was up?

A lot of people entertain the idea of attending their own funeral to see what kind of a turnout they’d get. I realised soon after the last of my visitors had left my room that I was experiencing my own send-off. And, I have to say, I was pretty pleased with the number of people who took the time to come. It was a conveyor belt of all the people who meant the most to me. But I didn’t want their farewells or their tears. While I was grateful to Lili for rustling everyone up, I started to wish she’d waited until I’d left the hospital. I would have preferred a recovery party back at home, rather than this solemn procession of friends and family with nothing to say. Surely she knew that?

Once again my mind returned to her farewell of the previous evening. That had pretty much set the tone for today. She had said goodbye to me then, and now she wanted others to have the opportunity to do so. But there was no need for goodbyes. I wasn’t going anywhere. As soon as the docs realised I could hear every word they said, they’d call off the last rites.

After a long day, I could see that Lili was getting ready to go home. I’d just been cleaned and my mouth suctioned of saliva, so I was surprised to see the door swing open and my doctor come in. He was followed by a colleague I’d not seen before. Lili was standing at the foot of my bed, Mustang keys in her hand, waiting to see what they planned to do to me. Surprisingly, they didn’t go anywhere near the machines, tubes or pipes. Instead, they asked Lili if they could have a word with her. “Of course,” she said. “What about?”

“Rich has been here for two days now,” said the doctor I recognised. “As you know, he’s shown no sign of improvement.” Lili nodded, looking from him to me.

“Our best guess is that the clot buster has not worked, which means that Rich has less than a 2 per cent chance of surviving more than a few days.”

He went on to explain that my whole body had shut down, that my internal organs were being kept operational only by electricity and steel, and that my brain had all but switched off because it had been starved of oxygen. “He can’t hear, see, taste, touch, feel or think,” the doctor said, with absolute certainty.

“Okay.” Lili’s voice was starting to crack, but she held it together. “But what if he does pull through?”

The doctor hesitated before replying. “If that happens – and it’s a very small ‘if’ – then he will still be spending the rest of his life much in this state.”

He gestured towards me. “I’m afraid he’ll be little more than a vegetable.”

Lili said nothing for what seemed like minutes. The only noise in the room was the rhythmic sighing and beeping of the machinery that the doctor had just pointed out was keeping me alive. “So,” she managed finally, “what exactly are you saying to me?”

The doctors looked at each other. Then the new one said, “It’s our considered medical opinion that you should consider switching off Rich’s life support. I’m sorry, Lili, but he’s not coming back.”

Now there was another noise in the room. Or at least in my head. It was me, screaming. These guys in white coats were trying to persuade my wife to kill me. They wanted to pull the plug because they thought I would never recover. They said I was a vegetable, that I would never understand what was going on around me.

But I did understand. In my head, I was the same guy I’d always been. I was the same guy who’d married Lili in 2006. I was the same guy who’d laughed and joked with her over the past three years.

I stared at Lili. I already knew what she was going to say. We’d discussed exactly this kind of eventuality and made a solemn pledge to each other. If ever the time came, we’d agreed, we would not hesitate to pull the plug. Lili opened her mouth to reply. I wanted to cry. My own wife was about to kill me.

It was the longest night of my life, knowing that Lili was out there with my daughters, Shannon, Melanie and Michelle, discussing whether to switch off the machines that were keeping me alive. I ran through every possible permutation of the conversation. Again and again I played the scene in my head, putting different words and arguments in each of their mouths. But every time they reached the same conclusion. They were going to pull the plug.

Out of sight to my right, the regular sound of the ventilator filling my lungs was a constant reminder of just how bad I was. I needed technology to pee, to breathe, even to stop drowning in my own spit. The doctors were spot on about that. But they’d also said my senses had already shut down. And they couldn’t have been more wrong about that.

I was suddenly aware of the National Geographic channel on the TV in front of me. “Look,” I imagined myself yelling to the doctors, “I can see that. There’s nothing wrong with my vision.”

I studied the program for a few minutes – anything to take my mind off what was about to happen to me. It was a documentary about space. The bright lights on the screen made me want to squint. But I couldn’t do that, so I did the next best thing. I blinked.

Defying extreme odds, Richard Marsh went on to recover from locked-in syndrome and now operates at 95 per cent of his pre-stroke capacity. The list of those who have emerged from this syndrome is microscopically small and the life expectancy of those who remain in the condition is desperately short.

Edited extract from Locked In, by Richard Marsh and Jeff Hudson, published by Hachette Australia this week.