Book Review: Blue Water, White Water, by Robert C. Samuels; Up the Creek Publishing: 2011; 295 pages, $24.95. Available from Amazon.com, Barnes and Noble and www.bluewaterwhitewater.com.

One Wild Ride
Don’t mistake this for a “mere” book review. It is also homage to longtime New Mobility contributing editor, Bob Samuels. His many travel stories, profiles, ongoing reporting on the evolution and demise of the iBOT, and most recently, investigative reporting on the NYC taxi fiasco [“The Fight for Accessible Taxis in New York City,” August 2011] have entertained, informed, and motivated NM readers for more than 20 years. Now he has turned his sharp-eyed focus on himself in a memoir that captures his initial battle with Guillain-Barré syndrome in 1981.

The focus not only looks inward — a first person, stream-of-consciousness narrative — it also combines unerring observation and critical reporting that exposes what goes on inside a major hospital when lives are at risk. Unlike many self-published memoirs about the onset of disability, it is written without sentimentality or “inspirational” intent, and his sharp-edged humor surfaces at just the right moments to provide comic relief.

Blue Water, White Water chronicles many moments when the author’s survival seems in doubt. But we know he will survive from page one, where the story begins with a celebration of Samuels’ 70th birthday party in 2006. The scene, in effect both a preface and an epilog, describes a successful life — family and friends gathered in tuxedos, waiters circulating with hors d’oeuvers and champagne, expensive silver expertly placed on the dinner table. At the end of the brief account, the author writes, “I settle at my place at the table and switch off my power wheelchair.”

It is no accident that the last word of this passage is “wheelchair.” It is a word that mainstream readers have difficulty associating with happy celebrations, world travels, and haute cuisine, and it is placed there to grab the reader’s curiosity and usher the unsuspecting soul into the surprising, frightful, and darkly humorous story that follows:

“December 1981”: At the age of 44, Samuels, then editor-writer of Texaco’s magazine for its stockholders, wakes one morning with uncharacteristic weakness in his left leg. He thinks it must have been due to recent yard work, or more likely, climbing the ladder to clean the gutters. But the weakness progresses hourly and he is advised by a doctor on the phone to get emergency treatment right away. It might be a stroke.

From the moment he is admitted to Nyack Hospital, his life spirals into a nightmarish reality beyond his control. His sardonic viewpoint, nonstop peril and captivating characterizations of the nurses, doctors and technicians who hold his life in their hands keep the reader on edge. There is no shortage of antagonistic characters to drive the action, beginning with “Bitch Doria,” the first of many nurses whose incompetence, inattentiveness, manipulative nature, lack of compassion or downright meanness emerge by degrees. But they all have their good points, too, their occasional kindnesses and usefulness, so we, like the author-patient, must endure them.

Within hours of admission, Guillain-Barré’s progressive demyelinization of his peripheral nerves robs Samuels of the use of his body. They put him on a respirator, which makes him unable to speak. He is reduced to communicating by blinking his eyes — once for yes, twice for no. Then, even this minute measure of control leaves him. Now he must direct those who hold his life in their hands by either rolling his eyes right, left, or both.

His first major nemesis is the respirator that keeps him breathing. That and his nose tube are continually getting clogged with mucus, which requires immediate suctioning. If the nurse doesn’t notice it, how does he tell them? How does he get their attention? Add to that the pain and discomfort that comes with the sudden lack of muscle tone. His only relief is to be turned frequently, and the “normal” routine of being turned every two hours is insufficient. How does he communicate his need? This dilemma brings out a schizoid nature in Samuels that no doubt lurks within each of us, especially when we have lost all control of our circumstances and are at the mercy of an ever-changing array of differing personalities with diverse viewpoints.

I see bitch Doria. Turn me now and I forgive you everything. I’ll love you forever. I’m blinking frantically. Don’t you see me,bitch, cunt; don’t you notice? “You don’t need suctioning,” she says. Brilliant fucking observation, brilliant! Now turn me, bitch! “I’ll be back in a short while to turn you, darling,” she says, moving silently away. There is no hope now …

For those of us familiar with the language of nurses, we know “in a short while” can mean an hour or more. In the meantime, Samuels must endure the pain — and the humiliation of not being able to do anything about it.

Quadriplegics familiar with spinal cord injury, especially high quads dependent on a vent, will empathize immediately. But there is one big difference that isolates Samuels further: He is “spared” the loss of sensation, so he feels the pain of every lump, obstruction, or painful unnatural posture.

Just as it seems things can only get worse, hope enters in the form of a new experimental treatment, plasmapheresis, and the foremost expert on the treatment is a moderate ambulance ride away at Columbia-Presbyterian Hospital.

Samuels’ wife, Rikki, ever at the ready to help, his one faithful ally in this upside-down world, makes the arrangements, and they opt for the move to the respected teaching hospital. When they meet the expert doctor, he turns out to be a doddering fool who lives in a world of abstract theory, totally disconnected from the practical needs of patients who cannot wait a moment longer for relief. His is a world of ordering painful EMG tests that yield no helpful information other than to confirm the diagnosis, again and again and again. He is a “nice” man, polite, gentle, but mostly ineffective. And his miracle treatment, largely because of his doddering, is too long in getting started.

If the plot sounds more fictional than real, it is due to Samuels’ skills as a writer. His characters are both exaggerated and true-to-life, and those of us with experience with extended hospital stays will recognize them. Each is a well-drawn individual, yet we know the broader types that they represent.

The final nemesis who Samuels must endure, Clare Ann, has a reputation of being the best Guillain-Barré nurse available. By now, Samuels and Rikki have learned that they must hire their own nursing help because hospital staff nurses cannot handle the job. They have the ultimate control now, the power to hire and fire, but the pool of first-rate nurses familiar with Guillain-Barré is lacking, and Samuels’ need is continual, neverending. Clare Ann, while knowledgeable and effective, is also controlling, jealous of other nurses, manipulative and at times even vindictive. She is the equivalent of Ken Kesey’s dreaded Nurse Ratched in One Flew Over the Cuckoo’s Nest.

While difficulties with nursing help is a constant concern, two nurses, Jenny and Kathleen, are models of professionalism and compassion, but they come and go quickly as temporary replacements, much to the dismay of the author.

Very early in the memoir, we learn that the accepted prognosis for Guillain-Barré is significant recovery — at least partial, and most times, complete. It is seen as a temporary nightmare by all the medical personnel, so Samuels and Rikki hang their hopes on hopeful words, only to be disappointed again and again.

For those of us who know Bob Samuels and his writing, the ultimate outcome is hopeful and positive, not necessarily because of the way the memoir ends, but because we know him in the present, the Samuels of the opening celebration of the book. We know his accomplishments, many travels, his good-natured writing. His memoir is like a play that portrays not only the worst stage of this disease, but also, on a broader stage, how good intentions and noble aspirations of the medical profession often fall woefully short. Trapped in the middle is the patient, who must bear the consequences. In the end, however, those who survive grow stronger for it.

The title of the book is aptly chosen. Samuels gives full expression to it in the following philosophical passage:

We make many choices, but the important stuff seems to happen on its own. It’s as though we’re all on small individual rafts, bobbing down a wide river. The water is calm and blue. We steer this way and that, sometimes even briefly paddling against the flow, seemingly in control. But the current pushes us relentlessly on. Unexpectedly, the river can narrow and suddenly the rapids are upon us. It’s all white water now, and we have no control. Tremendous boulders threaten. If our luck holds, if random chance is with us and our raft isn’t smashed on a rock or sucked into a whirlpool, we reach the next run of blue water.

Samuels wrote an early draft of his book back in the 1980s, soon after his wild white water ride, which explains the impressive wealth of specific detail that breathes life-like images and character descriptions into the story. It has received impressive reviews, including the following brief excerpt from The New York Times, written by Abigail Zuger, M.D. — “ … no one with even a passing interest in the experience of illness should miss Robert C. Samuels’ “Blue Water, White Water,” … it stands head and shoulders above the crowd.”

Now, at the age of 75, having enjoyed a productive stretch of blue water for a good long while, thanks in part to his longtime partner-mate Karen Brown — to whom the book is dedicated — Samuels can look back on his initial battle with Guillain-Barré and breathe easy, happy that the worst lies far upstream in the frightful white water.

Excerpt:
Pearl still struggles with the respirator. She leaves me off it too long. Fortunately, most of the time she also forgets to silence the warning beep. It brings someone running to see what’s wrong at least once a shift.

I’m off the machine so often that I sometimes fear that I may have suffered brain damage from lack of oxygen. I test myself. I’m able to recall names of people at Texaco whom I barely know, every curve and landmark on seldom used highways and the interiors of houses I visited years ago. I guess I’m still OK.

Water from condensation collects in the respirator hoses. Mostly it settles in the main one, running from my neck to the machine. The nurse usually empties it when she suctions me. Shorter hoses connect other parts of the machine. Those are cleared by respiratory technicians who visit my room to service the machine at least three times every 24 hours.

There’s an annoying gurgling in one of the hoses tonight and it’s bothering Pearl. She’s not sure where the sound is coming from. She detaches the hose from my neck. Beep, beep, beep. … She shakes it but only a few drops come out. Beep, beep, beep. … Now she’s tearing the shorter hoses off the machine. Holy shit, Pearl, you don’t know what you’re doing! Beep, beep, beep. … I can’t breathe! She’ll never get everything back together again.

Beep, beep, beep. … She’s staring in dumb amazement at the fucking machine, as if she’s never seen it before. I’m tingling from lack of oxygen. My vision is dimming. It’s like someone has turned down the lights. Beep, beep, beep. …

I’m losing consciousness. I’m going to die. Jesus, I’m amazingly calm about it. Hope Rikki gets a good lawyer and sues the asses off these bastards. Now a black void, nothingness, death.

“Mr. Samuels! Wake up, Mr. Samuels!” Some son-of-a-bitch is shouting, shaking my shoulder with an iron grip. It’s a tall, lanky guy in surgeon’s clothes. He needs a shave. When he sees I’m awake, he releases me. “He’ll be OK now,” he says, leaving abruptly. Case closed. Next crisis! My shoulder aches from his grip.