Part 1, Blue Water, White Water

People have clicked in here some 5,500 times to read this gripping true story.  You can still find part of it here, but the entire tale is now a handsome book in hard or soft cover, or as a download from both Amazon and  Barnes & Noble online. You can connect to them quickly through the book’s website: www.bluewaterwhitewater.com

Part 1 begins after this review.

Books

Sleepless, Bored and in Pain, a Patient Watched

By ABIGAIL ZUGER, M.D.
Published: March 12, 2012
New York Times

Just when it seems long past time for the age of memoir to be over — just when it seems impossible that any ailing person with literary inclinations could find anything new to say about illness, and the list of not-to-be-missed “patients are people too” books should be closed and locked — yet another book comes along.

Read an excerpt of “Blue Water, White Water.”

And despite all the above, no one with even a passing interest in the experience of illness should miss Robert C. Samuels’s “Blue Water, White Water,” a memoir drafted about 30 years ago and published without fanfare a few months ago; it stands head and shoulders above the crowd.

The details are slightly obsolete, to be sure: Mr. Samuels endured his many months of dire illness tethered to a respirator back in the 1980s, the Stone Age of modern intensive-care treatment. Nonetheless, his story from the wrong end of the tubes is timeless; the technology may evolve briskly, but the experience changes glacially, if at all.

A former beat reporter for The New York World-Telegram & Sun, Mr. Samuels covers his own story like a pro. He was healthy, 44, just returned from a trip around the world in December 1981, when he got out of bed one morning with a weak left leg. He wandered into the local emergency room half convinced he was imagining things.

By the next day he was completely paralyzed with a respirator breathing for him: Guillain-Barré syndrome, an autoimmune disease, was rapidly and efficiently stripping his motor nerves of their myelin sheathing, short-circuiting them all. Only his eyes still moved a little, from left to right. Nothing was wrong with his brain.

It would be many months before any part of him but his eyes moved again. He spent all that time in intensive care, first in his local hospital and then in one of New York City’s premier teaching institutions, a particularly grubby and uninspiring place. His mantra throughout, and the encouraging phrase on everyone’s lips: Guillain-Barré patients always get better.

That cheerful thought calmed his fear a little but did nothing for his constant discomfort. Completely immobile, incommunicado save for eye signals, sleepless and bored out of his mind, Mr. Samuels endured more pain than anyone might imagine — including, predictably enough, his own doctors and nurses.

His biggest enemy was gravity itself, as his flaccid muscles could no longer cushion his tender bones from any pressure, including that of mattress and pillow. Holding any position for more than half an hour meant misery. A tiny empty syringe left forgotten under his shoulder spelled agony. His primitive system of communication (eyes to the left for no, right for yes, back and forth for help) was seldom up to the challenge.

But others have covered the pain-and-helplessness story at greater length and complexity than Mr. Samuels. What makes his version so compelling is its mural of the medical personnel who wandered in and out of his shrunken world. With nothing to do but watch and remember, Mr. Samuels assembled the sketchbook of a professional observer, brisk, unsentimental, sardonic and altogether deadly.

His doctors were a well-meaning but erratic crowd, wise and foolish in equal measure. Their enthusiasms often seemed to have little to do with anything, certainly not the patient lying in front of them. One doctor guiding a fiber-optic tube through Mr. Samuels’s congested lungs was dazzled by their geography: “Right upper lobe,” she called out with passion. “Left lower lobe!” (No one in the room knew that Mr. Samuels was silently making conversation with his own list of lobes: his friends Werner and Nedra and their children, Susan, Janice and Chuck Loeb. Were the married daughters still Loebs? His mind spun a welcome momentary distraction.)

But it is the nurses who get the brunt of his attention, only because they ruled his days and nights. Seldom has anyone provided a better illustration of the simultaneous power and powerlessness of that complicated profession. Mr. Samuels’s good nurses struggled against the arbitrary constraints of their routines, while his bad ones drifted in a haze of marginal competence. Candy, Ingrid, Doria, Vinnie and the altogether fearsome Clare Ann — they are a terrifying, inspiring, nuanced and completely human bunch.

Mr. Samuels limits his own moralizing, but provides enough grist for any philosopher mulling over the essential conundrums of health care. Whose fault is it when a patient doesn’t get better? Some of his caretakers took every setback as a personal affront — a foolish reaction, or one that is essential to the enterprise? Some blamed the patient instead — misguided or brilliant psychology? There’s plenty to debate here, particularly because Mr. Samuels flouts all predictions and, sadly enough, does not get completely better, for all that he writes with the jaunty triumph of the survivor.

People with the terrible luck to get Guillain-Barré these days will be spared some of his misery. Certainly techniques of sedation and pain control are more sophisticated now, and accessories for the paralyzed body a little more streamlined and comfortable. But the essentials of the experience remain, and health care personnel who live through it in this book will appreciate the dreadful familiarity of the reflections from its author’s perfectly placed mirror.

PART 1

By Robert C. Samuels

December 2006
The evening is resplendent. It is a 70th birthday party for me and my friend, Charles Mouquin. We met when we were 12 years old so this is not the first one we’ve celebrated together.
Some 20 people, mostly members of our families, are gathered in Charles’ house, a Victorian mansion owned first by his grandparents. Charles and I are wearing tuxedos. I thought years from now my grandchildren might remember the evening as the night grandpa and his friend dressed up in those funny suits.
There are five grandchildren. Only Cassidy, the year and a half year-old daughter of my son Charlie and his wife Erin, is genetically connected to me. The other four are the grandchildren of my girlfriend Karen Brown. That doesn’t matter. I’ve known and treasured them all since the day they were born.
I am a happy man. Karen is my love and we are devoted to each other. We share a beautiful house and we travel widely. Because I’ve had enough sense to follow Charles’ advice (he’s a semi-retired securities analyst), I am financially comfortable. We have many good friends. My health is fine. I stay busy with magazine assignments and local civic affairs.
A French restaurant is catering the meal. Waiters are serving champagne and hors d’oeuvres in the large living room with a tall Christmas tree in one corner. It is time for dinner. We enter a candlelit dining room a glitter with sparkling crystal and silver. I settle at my place at the table and switch off my power wheelchair.

December 1981

“When there’s a bed open, we’re going to move you down to the intensive care unit,” the doctor says.

“When will that be?”

“It shouldn’t be too long.”

“Why do you want me there?”

“We want to watch you closely. We can do that better in the ICU.”

“Oh.”

He is matter-of-fact, calm, but so am I. I am stepping back and looking at this as I would an assignment. I am detached. I am covering my own story and I want to get it right. If it doesn’t turn out to be something to write about, it certainly is something I’m going to talk about, maybe for years to come.

Being admitted to a hospital is a significant event in most lives. It certainly is in mine. It had happened to me only twice in my 44 years—once to have my tonsils out and once for a broken wrist.

When I got up to use the bathroom early this morning I noticed a slight weakness in my left leg. I started to worry, but then I remembered all the yard work I’d been doing. That’s why the leg feels strange. I went back to bed and quickly fell asleep.

Six a.m. and the clock radio snaps on. The usual routine—my wife, Rikki, heads for one bathroom and I go to the other. The odd feeling in my leg surprises me until I recall the earlier trip to the bathroom. The leg is worse. I shower, shave and pause to tell Rikki about it. We agree that I probably pulled a muscle climbing the ladder to clean our roof gutters.

It’s a little difficult going upstairs. I tell myself that if I ignore the weakness it will go away. Dressing is no problem, but going back downstairs is tricky. Fortunately, the house is very old and the stairs are narrow. I use the walls for support.

Rikki and I have our coffee and talk about other things. “Let me try the leg again,” I suddenly say, walking to the sofa at the far end of the room. Something is definitely wrong—something serious. This isn’t a pulled muscle. I’ve had those. This feels different from anything that’s ever happened to me. Maybe I’m having a stroke.

“I’m calling Wanda. She’ll know what to do,” I say, sitting on the sofa. Wanda Heistand teaches nursing. Her husband, Dale, a good friend, is a Columbia University professor who had a very mild stroke not long ago. That’s probably why I’m thinking about it.

I calmly tell Wanda my symptoms. As I talk, I look outside. It’s a mild, overcast December morning. It is not a good day to die or to do anything else in particular. It’s a real nothing day. Wanda is sympathetic and concerned. She doesn’t mention the possibility of a stroke or try to guess what’s wrong. She suggests I call a doctor. It’s not yet seven am.

The problem is we don’t have a family doctor since we’re almost never sick. Then I remember that several months ago Rikki had strep throat and went to a young woman doctor who recently opened a practice. In general, my wife is not crazy about doctors, but she liked this one, Dr. Julia Palmer. I’d said then that if I got sick I would also use Dr. Palmer.

I reach her answering service. I have a weakness in my left leg and it could be an emergency, I calmly report. No, I am not a patient but my wife is. The operator seems unimpressed. As I’m telling Rikki that I don’t think we’ll hear from Dr. Palmer, the phone rings. It’s Dr. Palmer. She’s very concerned. Go directly to the Nyack Hospital emergency room, she advises. No, she can’t meet me because they haven’t yet admitted her there to practice but she’ll call a colleague and he’ll meet me. Good, I say, I don’t have all day to spend on this; I have to get to work.

“You sure you want to drive?” asks Rikki. Yes, I want to drive. I always want to drive. We have two cars and I take the one with automatic transmission. I tell Rikki I don’t believe my leg is strong enough now to push the clutch pedal on the other one.

During the first part of the short trip to the hospital I think about death, but I’m not frightened. The road is so familiar. I drive this way every morning on my way to work. The day again turns strange when I reach my usual entrance to the New York State Thruway and don’t take it.

For the first time I tell Rikki that I think I may be having a stroke. As I say it, I wonder if I believe it. If I believe it, why am I driving on Route 9W, a dangerous highway? Am I play-acting? I honestly don’t know. “You’ve given me a wonderful life,” I say, as if it’s over. Violins please, Mr. Previn.

Our mood is appropriately solemn as we reach the hospital parking lot. “Parking for Emergency Room Only,” says the sign. Jesus, I suddenly think there is nothing wrong with my leg. I am a total asshole! When I get out of the car I’m actually delighted to find the leg is weaker than before. For once, the car didn’t fix itself on the way to the mechanic. I find I can’t walk without a limp. I’m not making this up.

Dr. Palmer’s colleague hasn’t yet arrived. Instead, an emergency room doctor, ending his shift, examines me. He’s an American in his late fifties and he looks exhausted. It’s more than the long night that tires him, its life itself. He’s a defeated man. Booze? Drugs? Bad marriage? Malpractice? Something got him. He takes a brief history. I tell him that I recently returned from a business trip around the world. I was in Sumatra. I was in New Delhi. Do I have a tropical disease? He’s doubtful.

I remember a sophomoric joke from high school: “Doctor, Doctor, I’m suffering from a strange tropical disease.”

“What’s the disease?” asks the doctor.

“Lack o’ nookie,” replies the patient. I refrain from telling the joke. My temperature, heart rate and blood pressure are normal.

He tells me to lie on my back on an examining table with my knees bent. “Push your left foot into my hand. Now your right foot. Now again. I don’t think your left leg is weak,” he says, finally. “I can’t find anything wrong. Why don’t you go home.”

“No,” I tell him, “I’ll wait for the other doctor.” Rikki joins me in the curtained off cubicle. We whisper.

“What if this new doctor also tells you there’s nothing wrong?”

“Then we’ll try another hospital. I know there’s something wrong.” Rikki has bought The New York Times. We split it and start to read, I can’t concentrate. There’s a sobbing child in the next cubicle who needs stitches; a victim of an auto accident in another.

I call work to let them know what happened. “So I’m going to be a little late,” I tell Warren Jones, my boss and one of my best friends, as I hang up.

At last, Howard Long, the doctor Dr. Palmer sent arrives. He’s in his thirties—youthful, bearded, and self-assured. He listens carefully to my story and tests my legs. “Your blood pressure is normal. I don’t think you’re having a stroke but there is some weakness in your left leg. I’d like a neurologist to examine you.”

Dr. Leon Schwartz, the neurologist, is an elegant dresser. I suspect the cuffs on his suit jackets actually button. His examination is quick. I lie on my back and push my feet into his hands. He tests my reflexes. They’re normal. Doesn’t everyone’s leg jump when you hit it with a hammer?

I tell them about the trip. I’ve been back about a month. “Did you have shots before you left?” asks Dr. Schwartz.

“Yes. Typhoid, small pox and cholera, I think.”

“Any upset stomachs, colds anything like that?”

“Yes, as a matter of fact I had stomach cramps and diarrhea over the Thanksgiving weekend.” That was the weekend before last. “What do you think is wrong?”

“I’m not sure what you have, but I suspect it’s Guillain-Barré syndrome. It’s a neurological disorder that makes you very weak. We’d like to admit you and do some more tests.” Dr. Schwartz seems like a man at the top of his game. He’s in his forties, old enough to have all the necessary experience, but not yet tired of the job. I trust him.

They have me undress and don a hospital gown. A nurse folds everything neatly and slips it into a clear plastic bag. She gives it to Rikki to bring home. “That doesn’t make any sense,” I protest. “I won’t be here all that long. Why don’t I keep my clothes?”

“You don’t know how long you’ll be here,” the nurse says. “Your wife can bring clothes in when you’re discharged,” For the first time it occurs to me that I might not be home in a few hours.

It’s already afternoon. Rikki needs to phone some of her skating students and do some household chores. I’m to call when I know my room number. She’ll be back in a couple of hours.

An elderly hospital volunteer is pushing me on a stretcher. It makes me feel silly “You’re heavier than you look,” he says.

“Yeah, I know,” I say sharply. I hate nothing more than discussing my weight. I weigh about 190, up from the 178 I’d reached several months ago after strenuous dieting. Before that, I’d been around 230 and that wasn’t my all-time high. I am exactly six feet tall and always look as though I weigh less than I do. At 190, I feel I don’t look bad.

My bed is by the window on the backside of an upper floor of the hospital’s new wing. It looks across the highway at a cemetery that rises steeply up a hill. Tombstones and monuments bearing the family names of people I’ve lived with much of my life fills the place. The hospital faces Nyack High School. I graduated from there in 1955. I have lived in and near Nyack since 1949. My roots are here.

My roommate is an Italian-American in his seventies who nods hello when I arrive then quickly dozes off. I gaze out the window. I’m tired of this whole business. I want to go home.

When my roommate’s wife and son visit I try the paper again but I can’t avoid their conversation. “You should be happy,’ Pop,” the son tells him, “The doctor said you’re going to be all right.” Pop looks anything but happy.

“Everyone is asking about you,” his wife adds. “They’re glad you’re coming home.” She’s at least ten years younger than he is. The son is about my age and sloppy fat.

The son starts a conversation with me. He lives in Connecticut where he’s a manager in a Sears, but he grew up in Haverstraw. His parents still live there. Nyack and Haverstraw were bitter sports rivals when we were in high school. He was on the Haverstraw football team. Do I remember the Nyack teams? Sure I do. Do I remember two Nyack players from that era that went on to play in the National Football League? Is the Pope Catholic? “What are you in for?” he asks.

“The doctors want to do some tests. They think I may have Guillain-Barré syndrome. Ever hear of that?” His pleasant face is suddenly troubled. “What’s wrong?” I ask, frightened.

“A buddy of mine was laid up in the hospital three months with that, but he’s better now.” That can’t be, I think. I don’t have three months to spend in a hospital.

“But three months,” I say.

“Yeah, I know. Maybe you don’t have it so bad,” he says. Maybe I don’t have it at all, I think.

“Tell me all about your friend.”

“A whole bunch of us were down in Acapulco on vacation. The day before we were to come back, he felt very weak. We practically had to carry him on the plane. As soon as we landed, we took him right to a hospital. He had a rough time, but he’s better now.” He looks at his watch. It’s time for him to leave.

“Pop, I have to go. After I drop Mama home, I have that long drive home but just think, next time I’ll see you, you’ll be home,” he says, bending awkwardly to kiss his father.

“Ralph, Ralph,” the old man says.

“Yes, Papa.”

“Lose some weight, Ralph.”

“I plan to Pop, just as soon as the holidays are over. There are so many parties and such good food. I’ll start right after.” I feel Ralph’s pain and humiliation but I think Ralph could start before the holidays. After all, it’s only December second.

I’m supposed to call Rikki. I reach for the bedside phone and find that my hand is too weak to pick it up. I can’t believe how feeble I’ve become. I’m not frightened. I think it’s funny.

I want the back of the bed up so I can read the paper but the control has slid down the railing, out of my reach. I call a nurse to help me. “Why would anyone put the control down there?” I ask.

“To torture patients,” she says with a wink. Only a short while ago I could have reached it easily. I find I only can read the stories at the bottom of the front page because the paper is too heavy to move. Again, I think it’s funny.

When Rikki arrives she’s annoyed with me for not calling her. She is one of world’s most reliable people and doesn’t easily tolerate missed calls and appointments. If you asked her to meet you on the south walkway of the Golden Gate Bridge at noon on July 4 ten years from now and she wasn’t there you’d assume she was dead. As a competitive figure skater, she’d had to show up on time for lessons or catch absolute hell from her coach.

I explain that I’m too weak to pick up the phone. I try it again, so she can see. I still can’t. I also repeat Ralph’s story about his friend. Then I show her how heavy the newspaper has become. “I’m turning into the world’s weakest man.”

“You better watch it or I’ll knock you into next week,” Rikki threatens. We laugh like fools.

Now Dr. Schwartz and Dr. Long arrive with Dr. Peter Fields, an internist. They don’t seem surprised when I tell them how much weaker I’ve become. They ask Rikki to wait outside. Dr. Schwartz wants to inject my leg with something. “If it is another disease with the same symptoms,” he explains, “you’ll immediately start to regain your strength.”

“That sounds like the princess kissing the frog. You know, like something in a fairy tale. That sort of thing,” I say. They smile tensely and Dr. Schwartz gives me the shot in the left thigh. Nothing happens. Now Dr. Fields, who is a respiratory specialist, has me blow as hard as I can into a metal device.

“We’d like to do a lumbar puncture,” says Dr. Schwartz.

“What’s that?”

“It’s also called a spinal tap.”

“I don’t want it.”

“We really need this test.”

“Is it so important?” I ask.

“It’s vital. It’ll measure the protein level of the fluid in your spinal cord. It’s the one way we have of determining for sure if you have Guillain-Barré,” Dr. Schwartz explains.

“Why don’t you want it, Bob?” asks Dr. Fields, his balding forehead wrinkled with concern.

“I’m afraid of it. I’ve read it’s dangerous and painful.”

“It is really a routine procedure,” Dr. Fields says, reassuringly. “As for the pain, you’ll use extra Novocain, won’t you, Leon?”

“Sure,” says Dr. Schwartz.

They are the doctors. There is no way for me to argue with them unless I’m willing to be totally unreasonable and unscientific. I agree to the spinal tap.

“I don’t think I ever heard of Guillain-Barré,” I tell Dr. Schwartz when we’re alone.

“I bet you have,” he says. “Remember in 1976 people got sick from swine flu inoculations. What they had was Guillain-Barré. There was a great deal of publicity about it then.” Now I remember. It paralyzed some people.

“Dr. Schwartz, if you were me,” I ask, “would you rather have a stroke or Guillain-Barré?” I am thinking about my friend Dale, the Columbia professor. He was in the hospital for less than a week when he had his stroke, not three months.

“Guillain-Barré, no doubt about it.”

“Why?”

“Because you recover completely from Guillain-Barré. Strokes usually leave some terrible aftereffects.”

I’m confused. The only aftereffect Dale suffered was some slight restriction in the movement of one thumb. I have read a great many popular books and articles about medicine and the life of doctors, and now, when it counts, I can’t remember one helpful fact.

Before I have a chance to ask another question, Dr. Schwartz has me turn on my side and he injects the Novocain somewhere above the small of my back. After a short while, the area goes numb. Now he’s ready for the spinal tap itself. He’s got me bent as much as possible on my side. There’s terrific pressure against my back as he forces the needle between my vertebrae and into my spinal column. I feel no pain but I’m ill, nauseous. I’m glad it’s over. I hope I never have another. That’s when he tells me that they want to move me to intensive care.

Rikki and I are holding hands as I give her a report on everything that’s happened. She knows even less than I do about spinal taps and strokes. We share a sense of entering an alien world.

“Some real friends ordered this for you,” jokes the nurse as she delivers my dinner tray. It has only ice cream, milk, and coffee on it. I haven’t eaten all day, but I don’t care what they serve me. I’m still queasy from the spinal tap. My hand can barely hold the spoon. The ice cream is half melted and tastes grainy. I sip some of the milk through a straw. It’s been years since I had milk this way.

I ask Rikki to find a nurse. I need to pee but I know I’m too weak to walk to the bathroom without help. The nurse tells me to use a urinal. She draws the curtain between the beds and she and Rikki step out. I’m inhibited. If I could hear some water running it might help. She can’t do that. “Could you bring me a basin of warm water for me to put my hand in?”

“What good will that do?”

“In the Air Force, sometimes when someone was sleeping we put their hand in warm water. It made them wet their beds.”

“Why don’t you try the urinal again?”

When she draws the curtain again, I think of a Colorado mountaintop I visited this spring while getting material for some stories. Water from melting snows gushed down the mountain with a tremendous roar. Someone told me that they film beer commercials there. These watery thoughts don’t help.

“I guess I didn’t have to go so bad,” I say when Rikki returns. I’m lying.

“Have you gone since you’ve been here?” she asks.

“Well, no.”

“Darling, that’s been all day.”

“You know how I am. I don’t go often. I’ll go later.”

“Mr. Samuels?”

“Yes.” It’s a very young, attractive nurse with a clipboard.

“I have to ask you some questions.”

“Sure, but tell me what’s happened to my bed in intensive care?” Am I the first patient ever to be in a hurry to get to the ICU?

“I guess it’s not yet ready.”

“Are we waiting for someone to die to free it?”

“You’re terrible,” she says, but her tone suggests I may be right.

I’ve already answered most of the questions on her form. Again I tell about childhood diseases and family mortality. My mother died of stomach cancer when I was a small child and my older sister died of a brain tumor in 1975. My father is alive and well and, at 79, living in Mexico, I say with relief.

Finally, they’ve come to get me. Several months ago I had visited my mother-in-law in the intensive care unit of a hospital in Port Chester, New York. She had suffered a mild heart attack. The ward was a large, cheerful room with a distant view of Long Island Sound.

The elevator descends and they roll me into Nyack’s ICU. It’s a tomb, a bunker. If it’s not in the basement or sub-basement, it might as well be. This grim place has no windows. The center of the ward has a nursing station with desks and equipment. Around the perimeter are a dozen beds with patients, all seemingly hooked to machines. Thank God I need no machines.

My doctors are standing by the one empty bed. They look like hosts waiting for the overdue guest of honor. “Sorry I’m late fellas,” I say cheerily as two nurses slide me from the stretcher to the bed. Dr. Long laughs politely and the others smile.

“How are you feeling now?” Dr. Long asks.

“Fine.”

“Any problems?”

“No, none at all.”

“He hasn’t been able to urinate,” blurts Rikki. I’d almost forgotten that. Now, as she mentions it, I again have to go badly.

I think my problem is psychological, not physical, I say.

“When did you last go?” asks Dr. Long.

“When I got up this morning.” The doctors exchange glances.

“The reason you haven’t been able to urinate is physical, not psychological,” says Dr. Long. “I think he should have a catheter,” he casually tells the others. They nod in agreement and I nod too, as if I also think it a splendid idea. Actually, I’m nodding in terror.

I remember visiting my father in a Manhattan hospital some 10 years ago, just after his prostate operation. It was early evening on a steamy August day and I was on my way home from work as a reporter at the World-Telegram and Sun.

In the dim room light, I thought my father was dead. Then I saw he was breathing but asleep. Through the open fly of his pajamas I could see his penis, a stainless steel catheter stuck in its end. The shock of seeing that catheter in my father is still with me. For a long while the memory gave me nightmares. Every time I hear the word prostate I think of that catheter. Now, they want to give me one.

I am speechless with fright. They draw the curtain around my bed and ask Rikki to leave for a few minutes. She has no idea of my terror. I had never told her about the catheter in my father. I’d never told anyone.

It turns out that something that I had secretly feared for 10 years is nothing to fear at all. The procedure is quick and painless. It is a great relief to have it over, but mostly it’s a relief to urinate. It’s the true pause that refreshes.

They’re going to leave the catheter in, they explain, because it will be impossible for me to urinate for a while. The nerves to the muscles that control the bladder have stopped working. I don’t care, as long as no one sees the catheter. No one else should have my nightmares.

“Are you sure I have Guillain-Barré?” I ask Dr. Schwartz.

“Almost certain. The protein level of your spinal fluid is very high.”

“Do you know how I got this disease?”

“No, not positively. It may have been an allergic reaction to the inoculations you had before your trip. Then again, many cases report upper respiratory infections or stomach flu before coming down with it. You said you had stomach problems over Thanksgiving,” he points out.

For the first time he explains what’s going on inside my body: “Your nerves have a fatty covering called myelin. It acts as an insulator. With Guillain-Barré, this insulation is burned away and messages sent from your brain to your muscles are short-circuited. As a result, your brain isn’t able to tell your muscles what it wants.”

“When will it stop? How far will it go?”

“We can’t tell,” he says, “but one thing for you to remember is eventually that the myelin grows back and you do recover.”

They’ve hooked electrodes to my chest. My heart rate and other information are displayed on a digital readout. There are tubes and wires all over me. Every time the slightest thing goes wrong with one of these devices, an alarm rings. They go off so often that no one seems upset when they hear one. I wonder what happens when there’s a genuine emergency.

Dr. Fields again has me blow hard into an instrument. You’re having trouble breathing,” he declares. I don’t feel I am at all but what do I know? He wants me to use a respirator. Although I can breathe on my own now, I may have real problems later on, he says.

Rikki and I know almost nothing about respirators. All I can remember is that my friend, Stanley Spiegel, was on one for some hours following open-heart surgery. They’d shoved something down his throat and when they removed it he was left with a terrible sore throat.

Why don’t you go get some dinner now, the doctors tell Rikki. They’ll put me on the respirator while she’s gone. Somehow they neglect to mention that I won’t be able to talk when she returns. We have no last words.

“Why not use an iron lung?” I ask after she’s gone. I remember all the dramatic newsreels I’d seen as a kid of polio victims in iron lungs. It would be a way to avoid that sore throat. It had sounded terrible.

Iron lungs are old fashioned, Dr. Fields explains. They’re seldom used today. Respirators are better. What do I know? My ignorance is vast.

The procedure is quite simple. They are going to spray my throat with some fluid from an aerosol can. That’ll keep me from gagging. Then they’ll shove this thick tube down that will be hooked with a hose to the respirator. It doesn’t occur to me to ask how, with the tube in my throat, I’ll eat, drink, talk, or even spit.

Now it’s happening. They’ve sprayed my throat. Dr. Fields is pushing the thing in. Christ, no wonder Stanley had a sore throat. This hurts like hell but the spray works—I’m not gagging. Did Linda Lovelace use it in the movie “Deep Throat”? The tube is surely larger than anything Linda had to swallow. What kind of mind do I have?

I’m choking. Jesus! A nurse has a thin, clear, plastic tube and she’s suctioning mucus from my mouth and my nose. The plastic tube steals my breath; making my extremities tingle from lack of oxygen. When she jams the catheter down my throat, I feel as if I’m gagging, except I cannot gag. When she pushes it up my nose, my eyes tear and the irritation makes my nose run even more. I’m a damn fountain of mucus!

“Relax, let the machine breathe for you,” says Dr. Fields. That’s easy for you to say but it’s not so easy to do. I’ll try. One breathe, two breathes. I can’t do this—it’s impossible. The machine has a rhythm that is its rhythm not my rhythm. It has a sound that’s all its own too. It’s the noise of a bellows driven by a powerful electric motor.

Again, I’m choking. More suctioning. I’m drowning. How long are they going to keep this tube in? I haven’t asked. Can’t ask now. Don’t think about that.

“Relax, Bob, relax,” Dr. Fields is saying. “The machine will breathe for you.” I’m drowning again. More suctioning. My nose is a river.

I’m so uncomfortable. All I can move are my arms, one leg and my head—that’s all. The rest is too weak. I want to turn over but I can’t. “I’m going to put you on your side,” says the nurse who has been suctioning me. Sweet Angel, how did you know? She rolls me to my left, skillfully stuffing pillows behind me so I don’t slide back. Comfort, relief, but now I’m drowning again. More suctioning—nose, mouth. I’m a fucking fountain of mucus!

I hear Rikki’s voice over the sound of the respirator, but I can’t see her yet. Now she’s here and she looks stunned. She didn’t know what it meant when they said they were putting me on a respirator. I can’t tell her that I feel all right now, now that she’s back. Because of the tube, I can’t talk. Instead, I wink.

“Oh darling,” she says, clutching my hand, her eyes brimming with tears.

About rcsamuels

I've been a professional writer all his life, first a New York City newspaperman; later, a writer and editor for Texaco; and, more recently, the travel editor for a national magazine for people who use wheelchairs. I've authored hundreds of newspaper and magazine articles.
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22 Responses to Part 1, Blue Water, White Water

  1. Marc says:

    Beautiful entry, Bob. More please!

  2. PJ Mouquin says:

    I remember that night well!

  3. JoAnna says:

    Hi Bob, This is a wonderful story…I didn’t want it to end so soon! Looking forward to more!

  4. Susan Loeb says:

    Wonderful – I feel like I am there with you and it is scary. What is amazing is how it is so much like listening to you talk. Can’t wait for more.

  5. Betty Lee says:

    I was on edge, cannot wait to read the next “adventure”. I was able to visualize everything you wrote. (By the way I went from yahoo to gmail). I hope to spread your adventure. Take care and keep on writing.

  6. Fabulous! I love it! Don’t stop writing your story because I feel your love and compassion for life. rochelle spooner, piermont, ny. July, 9 ,2010

  7. Claire Keane ( former PT at NVPT) says:

    This is truly engaging. I am intrigued by the way you have captured the gripping fear and unending questions a pt can have as they begin their journey when their illness begins. Everything happened so fast. Can’ t wait to read the rest of your blog. Good luck

  8. Michael Shapiro says:

    Absolutely fascinating! Knowing you all these years and finally hearing all this in your own words is riveting. Can’t wait for the next installment.

  9. Jane Mulligan says:

    Great , I think you are wonderful to tell your life’ events People need to know what others have to go through in life Keep up the good work ….Jane

  10. pat hendrick says:

    Bob,
    You really have a gift for writing. This is truly a story that needs to be told.
    I can’t wait to read more.
    Hey, maybe a movie could be next!
    Pat

  11. Leslie Stewart says:

    “I feel your pain.” Truly, I become anxious when I read your account of your inability to expel the mucus, to breathe on your own or to turn over. It is a frighteningly wonderful account of hell.

  12. Joan Gussow says:

    You are such a vivid writer, Bob. I’m so glad you’re sharing this story with all of us. It’s riveting.

  13. Nik Mills says:

    Gripping. I look forward to reading further installments and to holding the book itself.

  14. lola esnard says:

    Bob, Keep those wonderful chapters coming. I’m amazed at your incredible recall. The whole time that I was reading the horrors of that ICU experience, the only thing that kept me going is knowing that you pulled through. Lola

  15. I love Chapter 3. You have a great sense of humor. Your story is bitter sweet.

  16. pat hendrick says:

    My favorite line, “Don’t they know there is a person who feels inside this body?”
    Great story!

  17. Barbara Riso says:

    Bob,
    Thank you for sharing your story.
    I think that some of it was very difficult to relive.
    Your writing is terrific. I am looking forward to the next chapters.
    Regards,
    Barbara

  18. pat hendrick says:

    Bob,
    I just finished your story, it is amazing! Thank you for sharing. I’d like to smack that Clare Ann.

    Pat

  19. Deepak K.C says:

    A Wheelchair user Architect from Nepal, flow completely with you story. Thanks to internet and social networking site like facebook that makes it possible to make it happen ! thanks for sharing such a wonderful story! I am desperately waiting to read 2nd part
    Deepak from Nepal

  20. Vickie Voss Johnson says:

    You are one remarkable human being, Bob!
    Vickie

  21. Tyler Lucas says:

    A powerful description of genuine helplessness.

  22. Cindy says:

    Hi Bob,
    I happened across your book and recognized your name right away. Couldn’t put the book down because it was all so familiar. I am “Lindy” in your book. Yes, the one with the Brooks Bros. shirts! Following your experiences every day back then was emotional for me. Each evening when I arrived at home, I would share how you were doing with my husband. I couldn’t believe what you were going through. I hope you are doing well now.
    Cindy

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