Jean S. Mason, University of Toronto

The Discourse of Disease:
“Patient Writes” at the “University of Tuberculosis”

Abstract: Using a collection of writing by patients who sought treatment for tuberculosis (TB) throughout the first half of the twentieth century at Saranac Lake, New York, this article examines the dynamics of patients’ expressive writing in the discourse of disease. Drawing on the pathographic tradition, this study examines both the writing and the conditions within which these patients used writing to give voice to their experiences. Findings reveal the crucial role that writing played in the daily curing regimen of many sanatoria patients, and show how patient writing both supported and was supported by a humanitarian environment in this historically premier medical setting that came to be known as “the university of tuberculosis.”
Keywords: pathography, patient narrative, discourse of disease, writing therapy, tuberculosis

On May 26, 1937, the Adirondack Mountain weather seemed so “fine” that seventeen year-old Bill Hastings wrote to his Aunt Peggy and Grandpa, “Summer is here!” Barely graduated from high school, Bill had contracted tuberculosis and been sent to “cure” at the famed Trudeau Sanatorium in Saranac Lake, New York. Bill’s parents felt confident this northern New York sanatorium would cure their son’s TB in time for him to enter Annapolis in September. Like many TB patients “taking the cure,” Bill instinctively turned to writing to relieve long hours of loneliness and anxiety. Bill’s letters paint a detailed picture of sanatorium life from a patient’s perspective. “Now that summer is here my entire day is spent out on the porch. I have my radio outside too. The other day I went to the dentist to have a couple of cavities filled. It was a nice day and I enjoyed getting out for that half hour.” Typical of sanatorium patients, Bill obsessed about his temperature and weight, and reported these vital statistics in a letter to his Dad on June sixth, “My temps this week have been 99.1, 99, 98.6, 98.7, 99, 99. Lost a pound this time-probably the heat.” Bill continued to enthuse about the fine spring as he wrote, “We are still having grand weather here-makes you glad to be alive”. Sadly, Bill Hastings died a few days after writing these words. But Bill’s letters live on as part of a substantial collection of writing by TB patients who cured in Saranac Lake before “wonder drugs” eliminated the sanatoria movement. Both implicitly and explicitly, these TB “pathographies” suggest how patient writing can humanize the discourse of disease.

By the time Bill Hastings cured in Saranac Lake in the 1930s, the village had become known as the “university of tuberculosis” for its leading role in the treatment and research of TB. The Saranac Lake collection contains a significant database of patient writing, centered on a single disease, framed within a specific time, and located in a relatively controlled setting. Largely unexplored, this archive contains correspondence, diaries, poems, manuscripts, memoirs, newsletters, reunion memorabilia and ephemera including postcards and photographs. The Saranac Lake collection offers a three-fold research opportunity. Archival material informs the social history of tuberculosis, balances the traditionally underrepresented patients’ experience against clinical records and scientific reports, and reveals the crucial role that writing played in the daily curing regimen of many sanatoria patients.

A sense of sanatoria culture in general and Saranac Lake in particular is essential to understand the setting that prompted these patients to write. Picture, for a moment, the world where TB victims like Bill Hastings lived. Until 1944 and the discovery of streptomycin, tuberculosis killed more human beings than any other disease on earth. Imagine HIV as an airborne contagion, or SARS as a widespread affliction. Primarily a disease of the lungs, the tubercle bacillus flew from one person to another on the airwave of a laugh or a sneeze. Known variously as TB, consumption, or phthisis, the result was the same. If the bacillus found a receptive resting place in your lungs, that nagging cough you thought was a cold progressed to symptoms similar to bronchitis or influenza. As the disease took its course, you experienced variously fever, cough, congestion, breathlessness, weight loss, weakness, and even haemorrhaging as indications of your probable fate. Your demise might be as brief as months or as lengthy as years. And, of course, you infected any number of unlucky breathers who happened to share your airspace. Your best chance for recovery was to join the thousands of other afflicted souls in a pilgrimage of hope. Destination: the tuberculosis sanatorium.

The sanatoria movement started in Germany and Switzerland mid-1800, spread rapidly to North America where it began as an ad hoc initiative, developed a character of its own, and grew to immense proportions. From the late 1800s to the mid-1900s, millions of North American TB sufferers spent time in sanatoria practicing various curative regimes based principally on climate, rest, diet and, sometimes, surgical intervention. TB patients might find themselves “taking the cure” close to home and loved ones, or far from friends and family in a world devoid of modern telecommunication. Depending on their finances, health-seekers could be incarcerated in an inner-city fortress with gulag-like conditions, introduced to the wonders of nature in little more than a tent, ensconced behind gilded gates noshing gourmet fare, cloistered among well-meaning religious philanthropists, or nestled cosily among forest pines in a mountain hideaway-like Bill Hastings in Saranac Lake.

Saranac Lake led North America in establishing and institutionalizing tuberculosis treatment and research. In 1873, young Dr. Edward Livingston Trudeau, physician, husband, father, and tuberculosis victim discovered the region’s health-giving properties. At that time, Saranac Lake consisted of only a few hundred loggers and wilderness guides. Anticipating death, Trudeau went to Saranac Lake to die surrounded by memories of youthful vacations spent fishing, hunting, and exploring in the mountains. Instead of dying, Trudeau revived and regained a remarkable degree of health in a surprisingly short time. This pattern repeated itself several times over a period of six years. Each time Trudeau left Saranac Lake, his tuberculosis recurred. Each time Trudeau returned to Saranac Lake, he regained strength and spirit. In 1876, against all advice, the urbane Doctor Trudeau of New York City moved himself, his wife, Charlotte, their two infants, and his medical practice to this remote Adirondack wilderness.

A naturally curious intellectual, Trudeau’s interest in tuberculosis went beyond his own experience. He gathered information on developments in Europe-the emergent sanatoria movement, and Koch’s claims of isolating the tubercle bacillus in 1882. In 1884, with approximately four hundred dollars donated by sympathetic friends, Trudeau founded North America’s first successful TB sanatorium-the Adirondack Cottage Sanitarium-to provide “suitable accommodations in the Adirondacks for patients of moderate means.” This first cottage, called “Little Red,” consisted of “one room, fourteen by eighteen, and a porch so small that only one patient could sit out at a time. Little Red was furnished with a wood stove, two cot-beds, a washstand, two chairs and a kerosene lamp.” The first two patients were Alice and Mary Hunt, sisters who worked in the factories of New York City. Local workers hauled water up the hill from the Saranac River. Little Blue and Little Green soon followed Little Red. Relying on philanthropy and good will, Trudeau acquired land, built cottages, trained caregivers, instituted research, and followed his lifelong credo “to cure sometimes, to relieve often, to comfort always.” Trudeau contributed his medical services for free.

In addition to founding a sanatorium, Edward Trudeau became the first person in North America to isolate the tubercle bacillus. Trudeau and his colleagues opened the first research facility in the world devoted solely to TB, founded a school of nursing dedicated to educating nurses in the care of TB patients, established the first institutionalized occupational therapy facility in the world, and supported the development of other local curing initiatives. The “university of tuberculosis” incorporated patient care, scientific research, medical training, patient rehabilitation, and community-based healthcare-in many ways an exemplary model of cooperation based on humanitarian medicine. The vision and methods of Edward Livingston Trudeau and his colleagues attended to the psychological as well as the physical and reflect, in many ways, today’s turn towards holistic medicine. E. L.Trudeau ultimately succumbed to TB in 1915, his death no doubt hastened by years of exhausting dedication to conquering the disease that claimed him. Trudeau lived long enough, however, to firmly establish “America’s magic mountain,” a remarkable community of healing founded on tuberculosis.

By 1920, the population of Saranac Lake had grown from several hundred to over 6,000. Its population was comprised mainly of tuberculosis patients and caregivers, many filling both roles at different times during their stay. By 1930, the Trudeau Sanatorium occupied 60 buildings on 93 acres. Other local sanatoria soon followed Trudeau’s example. At its peak in the 1920s, 1930s, and 1940s, Saranac Lake was home to not only Trudeau, but also to Ray Brook State Sanatorium, Will Rogers Sanatorium for patients in the theatre industry, Stony Wold Sanatorium for women, Gabriel’s Charitable Sanatorium operated by the Sisters of Mercy, and an entire town comprised largely of private cure cottages. Even today, most Saranac Lake homes reflect this architectural heritage. The “village of a thousand porches” still bears witness to an economy built literally on air. Patients spent a large portion of their days, and even nights, lying out on these porches breathing the mountain air in specially designed “cure chairs.” One of the features of these chairs was a flat, extra-large, wooden armrest constructed to accommodate writing.

Tuberculosis wove a socio-economic tapestry unimaginable under ordinary circumstances, and created a culture that would challenge the most intrepid anthropologist. Saranac Lake health-seekers ranged from the rich and famous, including Robert Louis Stevenson, Albert Einstein, Walker Percy, Christy Mathewson, Norman Bethune, Rollo May, Stephen Crane, Bela Bartok, and Manuel Luis Quezon Antonia y Molina (former President of the Philippines), to countless indigent and unknown sufferers. Unlike many other sanatoria destinations, TB victims were welcomed in Saranac Lake, not stigmatized or confined outside village limits. TB was the heart of the community. A letter from village Mayor Alton B. (Tony) Anderson typifies the welcome new patients received. Anderson’s message reassured and comforted new arrivals, “We know from the experience of others, including myself, who have come to Saranac Lake and regained health, due to the environment and competent medical and other attention which you receive here that at some future time you will be able to resume your normal mode of life.” Perhaps even more important, Anderson’s letter gave patients a sense of hope and belonging within the community, “When you are able to participate in our local activities we have many social and fraternal organizations which will be happy to be of service to you and aid in making your stay in our midst beneficial and enjoyable.” The tone set by Edward Livingston Trudeau’s personality and the geophysical isolation of Saranac Lake combined to create a unique opportunity for community building. Together, diverse refugees from the “white plague” built an unusual and thriving society of doctors, nurses, patients, merchants, professionals, schools, libraries, newspapers, a radio station, churches, undertakers, entertainers, athletes, artists, and sundry support workers. Within this environment, TB patients shared a common challenge-long hours of enforced idleness. A favorite way to fill this emptiness was to write.

Sixteen-year old Evelyn Bellak is one of the first patients to leave evidence of daily writing. Imagine opening the stiff dusty covers of a 1918 diary that preserves the story of such a young girl stricken with TB and sent far from home to cure. Evelyn Bellak cured at Ray Brook State Sanatorium. Evelyn begins her diary on Tuesday, January 1, 1918 with the words, “Well, Diary, I’ll introduce myself. My name is Evelyn. I’m 16 years old. I have tuberculosis and at present time am in the Ray Brook Sanatorium trying to get cured.”

Evelyn wrote faithfully every day for nearly an entire year. What strikes me most about Evelyn’s entries is their very ordinariness. I imagine that Evelyn found solace in her diary at the end of each day, and that her diary played a role similar to a faithful confidante. Evelyn’s diary describes activities common to many teenagers. Evelyn attended religious services, concerts, movies, and parties at the sanatorium and occasionally in the village. She describes in detail her seventeenth birthday party on August 20. “I got the nicest things. Paul sent a darling box of stationery. Mother gave me a box of candy and the cake. M. sent the most wonderful snap-shot, book and a box of candy.” M. refers to a male patient of similar age with whom Evelyn conducted a typical adolescent courtship according to her diary. Like Bill Hastings, Evelyn Bellak obsessed about her weight and temperature noting fluctuations almost daily. Suddenly, the entries stop. Evelyn wrote for the last time on November 18, 1918. There is nothing in her final entry to suggest anything out of the ordinary. Evelyn wrote of attending church services, talking “quite a while” with M., rehearsing for the sanatorium Thanksgiving pageant, and observing the weather. “It started out to be pretty nice today, and then it rained.” I wonder if Evelyn’s disease took the same swift and unanticipated turn as Bill Hastings. A check of local death records reveals nothing. I hope Evelyn simply forgot her diary-its therapeutic purpose accomplished-as she hurried to catch the train back home.

While many patients kept diaries or journals, others preferred to write poetry. In 1892, Herbert Scholfield had recently begun his career as a young teacher in New Jersey when he contracted tuberculosis and left for Saranac Lake. Schofield lived as a semi-invalid for thirty years. The 1919 publication Sonnets of Herbert Scholfield-containing 133 sonnets in all-merits attention for two reasons.

First, each sonnet displays a remarkable level of technical accomplishment. Scholfield’s sonnets conform to the Elizabethan tradition of metre and rhyme, form a complete sequence on a single theme, employ typical literary conventions such as the quest, the guide, the dream, and the idealized female, and exemplify the narrative development of a sonnet sequence. Second, the narrative development in Scholfield’s Sonnets traces the speaker’s process of coming to terms with tuberculosis, thus giving voice to the patient’s unique experience and revealing the role that writing played in this process. Stating his purpose to offer cheer and comfort in the “Prologue,” the speaker of Part I imagines his life had he not contracted TB. Fantasies of courting, marriage, family, and old age are rendered in heart-breaking detail. Part II explores the reality of a life half-lived. Part III examines the speaker’s diminished options and declares a commitment to writing. The final Part IV embraces resolution through the immortality of verse. Sonnet XCI in Part III depicts clearly the place of writing in the speaker’s world:

O poesy, thou art a path for me
Through the dark forest tangle of my days;
Thou art a stream and I am borne by thee,
Thy life my pain of loneliness allays;
Thou art a hidden cleft deep in the earth,
Through which the waters of my love are led
In yearning hope that they may yet find birth
And some far vale may yet by them be fed.
Why must my path the lonely forest keep?
Why winds my stream through endless solitude?
Why must my love be ever buried deep
And my own heart its tenderness seclude?
Nature hath willed it thus; yet kind was she
Giving thy way for an escape to me.

Schofield leaves no doubt as to importance of writing in his process of curing. Scholfield died in Saranac Lake two years after publishing his sonnets and thirty years after contracting TB.

Like Herbert Scholfield, thirty-five year old Adelaide Crapsey wrote poetry to counteract the long hours of unwelcome passivity. Because Adelaide was severely ill, she was confined to bed in a private cure cottage with infrequent outside contact other than her doctor and nurse. Adelaide could do little other than write. In contrast to her letters that disguised distress beneath a veneer of sophisticated “bons mots,” Crapsey’s poetry provided a private outlet where this atypically liberated woman could confide her fears and frustrations. Adelaide graduated from Vassar in 1901 and taught poetics at Smith College when tuberculosis forced her to seek the cure in Saranac Lake in 1913. Writing poetry wasn’t new to Adelaide. She’d earlier invented a highly compressed verse form she called the “cinquain” and written a number of poems, but published only a single poem before contracting TB. As a technically minded English professor, Crapsey approached poetry more from a critical than an expressive perspective. Considered her more serious life work, Crapsey left two-thirds of Analysis of English Metrics complete at the time of her death in 1914. When faced with tuberculosis, however, Adelaide turned to the expressiveness of poetry. Although she considered many of her poems works in progress, Adelaide arranged them in careful order as she sensed the end approaching. Crapsey’s seventy poems were published posthumously as a collection eight years after her death. Near the end of her collection, Adelaide placed “The Lonely Death”:

In the cold I will rise, I will bathe
In waters of ice; myself
Will shiver, and shrive myself,
Alone in the dawn, and anoint
Forehead and feet and hands;
I will shutter the windows from light,
I will place in their sockets the four
Tall candles and set them a-flame
In the grey of the dawn; and myself
Will lay myself straight in my bed,
And draw the sheet under my chin.

As sad as we may find this poem, it gives voice to the patient’s experience and we can speculate that its writing gave Adelaide emotional release and, perhaps, a sense of being heard. The collection’s final poem, “The Immortal Residue,” suggests the palliative value Adelaide Crapsey placed on her writing: “ Wouldst thou find my ashes? Look/ In the pages of my book;/ And, as these thy hand doth turn,/ Know here is my funeral urn.” This single collection of Crapsey’s poems brought the deceased poet some attention. Crapsey’s evident promise and her tragic end prompted three biographies. Unfortunately, none of these studies examines critically how writing figured in Crapsey’s curing.

John Theodore Dalton arrived in Saranac Lake seven years after Adelaide Crapsey had come and gone. Dalton read and admired Crapsey’s poems while curing at Trudeau. Dalton’s health problems had begun when he couldn’t seem to recover fully from the influenza epidemic of 1918. Friends said it was his training in the Students’ Army Corps during the Great War that sapped John’s health. But John graduated Dartmouth and went abroad to study Classics at Cambridge. By 1923 he tested positive for tuberculosis and left Cambridge, England for Saranac Lake. Perhaps it was John’s admiration of Adelaide’s poetry or his love of Classics that prompted him to write poems, plays, and songs to pass the time and amuse fellow patients. But Dalton didn’t place much literary value on his own poetry. Friends often rescued poems written on scraps of paper that John tossed into the wastebasket. It was obviously the writing process that John valued. When he died aged twenty-nine in 1927, John’s friends prepared and published a small volume of forty-nine poems he’d scribbled while at Saranac Lake. They called it Land of Dreams.

John Dalton’s verses display a gentle bantering of the personnel and paraphernalia attached to curing, and a delicate mockery of his own suffering. The poem, “Write Verse”-beginning with its ironic title-shows an understanding of the therapeutic value of both laughter and writing:

In summer things are all my way;
It’s flower growing time.
For, when I want a big bouquet,
I’ve always got a dime.

But when the snow begins to fly
I haven’t got a chance;
The other fellow’s flower-talk
Still breathes the same romance.

Oh, daffodils and crocus buds
And orchids pink and blue!
Oh, roses red and violets
And white carnations too!

The other fellow sends her these:
I’ve but an empty purse.
Aw gee! What can a fellow do
But write her flowery veres?

John Dalton’s ironic sense of life didn’t fail him even when he chose to invoke his muse. Dalton acknowledged his bond with Crapsey’s experience in “You’ve Shown the Way,” subtitled “To Adelaide Crapsey-Once of Saranac”: “Thanks, Adelaide, you showed the way;/ I’m sorry you’re not here to-day./ Perhaps I’d make your verse less sad,/ And you could make mine far less bad..” John Dalton’s fellow-patient, Bob Davis, sums up his friend’s reliance on writing while curing: “Valiantly he fought the white plague with song and story.”

Humour and writing likewise helped patient Edward E. Locke to confront tuberculosis. Locke spent eight years in Saranac Lake during the 1930s and 1940s. Locke left behind a manuscript entitled Smiles: A Novelty-Souvenir-Book Picturing Life in the Adirondacks. Locke’s manuscript contains poetry, prose, sketches and cartoons. In the “Introduction,” Locke declares,

These tales were mostly written when ‘sitting out’ on the porch taking the cure. Numbed fingers frequently held a pen in which the ink was frozen. It was always at such times that brilliant thots (sic) came to me-but alas before the ink would flow, the thots (sic) had flown.

Locke’s acclaimed purpose in writing Smiles was to “cause a few smiles.” Although his intention was comic relief, Locke seems uncannily perceptive when he describes how the “writing mindset” descends upon sanatorium patients, in his poem, “The Saranac Mind”:

Saranac Lake where the air is so pure,
That’s where you go to take the cure,
You hire a porch that is two by four,
And on it you dwell six months or more,
For a week you think of things galore,
Of business, or troubles by the score;
Of pleasures and each boyhood prank,
But after that your mind’s a blank:
For it only takes one week I find,
To develop the genuine “Saranac mind.”

Locke’s description of the “Saranac mind” alludes to an environment of natural beauty and freedom from ordinary stress that allowed patients the relative luxury of release through healthy self-expression despite the extraordinary circumstances in which they found themselves. Speaking for himself and others who turn to laughter and writing for relief, Locke comments in his “Introduction” that “The freedom with which we write and speak of our troubles is not born of a hardheartedness or a callousness to the situation. . . . for we all know, that no physical improvement is possible, where the body is governed by a depressed mind.” Locke expresses a straightforward understanding of the mind-body connection in healing and the role that writing may play in it.

For some Saranac Lake patients, the chance to write and publish locally was literally a lifeline. One of the most innovative schemes for turning writing into dollars was hatched by patient Beanie Barnet and his Trudeau Sanatorium roommate Seymour Eaton, Jr. When Beanie and Seymour complained of feeling down, Seymour’s father suggested they write inspirational messages to cheer each other up. Beanie and Seymour soon realized they could never pursue demanding careers, so the two decided to publish small chapbooks of these inspirational messages to cheer others and make money. Together they launched their Trotty Veck Messages series in 1916.

A character in Charles Dickens’ short story “The Chimes,” Trotty Veck delivered messages of cheer to townsfolk, despite the frailties of his health. Barnet and Eaton fashioned themselves after Dickens’ character and became “Trotty Vecks.” Their Trotty Veck Messages contained short selections of prose and verse steeped in wisdom and humor. Quotations came from the widest imaginable range of sources from antiquity to current events to local lore. Shakespeare shares the spotlight with an old Adirondack guide in an issue devoted to the theme of “Friends.” Shakespeare counsels, “Those friends thou has, and their adoption tried, / Grapple them to thy soul with hoops of steel, / But do not dull thy palm with entertainment / Of each new hatched unfledged comrade.” Equally confident of his counsel, “The old Adirondack guide says he does not mind long sermons as long as they do not wake him up.”

Trotty Veck Messages became an instant success-an antidote for both TB and the Great War. Barnet and Eaton sold four thousand copies the first year of 1916. Sadly, Seymour Eaton died in 1918. But Beanie Barnet carried on. By 1966 the Adirondack Daily Enterprise reported that Trotty Veck Messages had sold 4 million copies worldwide. Beanie had arrived in Saranac Lake in 1907 expecting-like Edward Livingston Trudeau-to die. Instead, Beanie cured, wrote, stayed, employed others, and lived in Saranac Lake as both patient and ex-patient until he died there in 1977, aged ninety! Surely writing played a key role in Barnet’s ability to cope with the challenges of TB. Certainly Barnet’s widely distributed Trotty Veck Messages integrated the patient’s voice into the discourse of this particularly widespread disease.

Martha Rebentisch cured in Saranac Lake on her own terms. Martha’s father checked her into the Trudeau Sanatorium in 1927 when Martha was in her late twenties. In 1931, unimproved and frustrated after the usual curing regimen and several attempts at surgical intervention, Martha spotted an ad in the “local paper.” It read “Wanted: To get in touch with some invalid who is not improving, and who would like to go into the woods for the summer.” Martha contacted Fred Rice, a local guideboat builder in his sixties who had placed the ad, checked out of Trudeau Sanatorium, and embarked on an alternative naturalistic cure. Fred packed his guideboat with supplies, brought Martha aboard, and headed for Weller Pond, a two-hour paddle through two of the Saranac lakes and up the Saranac River. Fred installed Martha onshore in one tent, himself in another. Martha spent the next six summers camping on Weller Pond, and wintering with Fred and his family in their humble cottage. Martha filled her long uninterrupted hours by writing. She filled her journals with the minutest details of a life surrounded by water, trees, flowers, fish, animals, insects, birds, sunshine, wind, rain, rainbows and, most of all, fresh mountain air. As Martha camped and wrote, her health slowly improved. As a result of her Weller Pond regimen, Martha recovered from TB and joined the community of Saranac Lake where she continued to write until her death in 1964.

Martha’s journal writing was so copious that she eventually published three books based on her journals under the name Martha Reben. The Healing Woods, The Way of the Wilderness, and A Sharing of Joy record the process that Martha believes cured her tuberculosis. Exactly when she became tuberculosis-free is uncertain. In The Healing Woods Martha writes, “I wish I could say that I was cured of tuberculosis during my second summer in the woods, but the truth is that I never knew when this came about. It was more than ten years after I first went into the woods before I had an X-ray taken or had a medical examination of any kind. These tests confirmed what I had already guessed-that I no longer had tuberculosis.” It is impossible to say exactly what cured Martha’s TB, but her experience certainly suggests both the woods and her writing played significant roles. Martha comments specifically on the need she felt to write in The Way of The Wilderness saying, “I would not exchange a single hour of my freedom for something I did not need. I would cut living to the bone and buy time for writing and studying with the things I did without.”

Perhaps the most fascinating patient narrative I’ve encountered belongs to Isabel Smith. Smith contracted TB in 1928 as a young nurse trainee in New York City. She was speedily packed off to Saranac Lake where she remained bedridden for twenty-one years! Finally, in 1950, new “wonder drugs” left Isabel Smith cured but frail. During her incarceration, Smith wrote copious journals, letters and, ultimately, published her memoir, Wish I Might, in 1954. Smith’s memoir illustrates clearly how traditional sources of medical history omit what arguably should be the central voice in the discourse of disease-the patient’s experience.

As part of her TB treatment, Smith underwent a surgical procedure known as pneumothorax. The purpose of pneumothorax was to collapse a diseased lung by means of air forced through a needle between the ribs into the pleural cavity surrounding the lung. Medical experts thought that collapsing the lung allowed it to rest and recover. As the body absorbed the air, regular refills were required to keep the lung at rest. These excerpts describe this procedure from each of three perspectives-the scientific report, the clinical record, and the patient narrative:

• In 1940, about the time Isabel Smith underwent pneumothorax, physicians at the Trudeau Foundation published a scientific report on Artificial Pneumothorax: Its Practical Application in the Treatment of Pulmonary Tuberculosis. Chapter II, “The Physiology of Artificial Pneumothorax,” describes how the procedure affects the normal respiratory cycle:

When, as in artificial pneumothorax therapy, quantities of 300 to 500 cc. of air are introduced into the pleural space at intervals of a week or thereabouts, striking alterations in the dynamics of respiration occur. The nature and the extent of these changes depend upon the quantity of air introduced and the state of the mediastinum, pleurae and lungs… Artificial pneumothorax therapy frequently relieves dyspnea by reducing toxemia. ‘Selective’ artificial pneumothorax may relieve dyspnea in subjects with a low vital capacity, by reducing the residual air in the healthy portion of the collapsed lung and improving the ventilation of the contra lateral lung.

• A clinical record in the form of a Pneumothorax Chart was kept for each patient undergoing treatment. A typical chart recorded the patient’s name, number, side and site of needle insertion, and method of anesthesia on the front of the chart. The reverse side was divided into five columns that recorded the date, the amount of air administered, the pressures before and after, and the administering doctor. The charts I have seen include only these bare facts with no space for additional comments. Details of each treatment were recorded meticulously on each patient’s “pneumo” chart.

• Isabel’s own narrative tells this patient’s experience of pneumothorax. Smith describes waiting for x-ray results as her condition worsened and then experiencing her first treatment. She writes,
I held my breath, waiting for my report and I prayed that it might be all right. Perhaps I had just caught cold. Within twenty-four hours I saw Dr. Trudeau’s car pull up in front of the house. And when I saw Miss Taft, his office nurse, getting out followed by that meaningful mahogany case containing the pneumothorax apparatus, my heart sank. I knew the answer. When the two of them walked into my room, Dr. Trudeau’s face was so grim and his manner so gruff that I had no word to say. I simply turned over on my stomach ready for what I knew was to come. And the hollow needle was already inserted in my anesthetized back before I ventured a cautious question. ‘I guess my X ray didn’t look so good?’ I murmured, feeling like a bug being pinned to a board. ‘No, Izzy. It was punk,’ he replied. Even as he spoke, air was beginning to pour through the needle into the space beyond the pleural lining of my chest wall, thus gradually inducing my lung to collapse. Not that I felt it as far as the lung was concerned. I felt only the tugs and pulls of pain where adhesions were trying to hold the lung fast to the pleura. But Dr. Trudeau’s skill and gentleness-he is a great hand with the needle-made this initial treatment much easier than it might have been. It was not really more than six or eight minutes-although it seemed much longer to me-before only a tuft of cotton on my back marked the puncture where my pneumothorax treatments had begun, and the general area in which I would receive from time to time, like an inner tube, further refills of air. The needle had not made a sound as it entered my back and the minute break in the skin healed in a day. But as I lay bolstered high on my pillows that night, with every breath making me wince (the adhesions are sometimes stubborn the first few days), I knew that all my hopes for the future had collapsed along with my faithless lung.

Both the scientific report and the clinical record contain dry de-contextualized fact. They are devoid of the human quality expressed by Smith the patient. They record an incomplete experience. The patient’s narrative completes the experience. We can speculate how reading this type of patient narrative might sensitize medical personnel to the nature of the patient’s suffering and result in enhanced patient care.

Rita Charon, MD and PhD, presents a model of “narrative medicine” that argues for ”respect for the narrative dimensions of illness and care-giving.” On a more global scale, Anne Hunsaker Hawkins directs us to consider the cultural value when patients’ voices are restored to their rightful place in medical communication. In Reconstructing Illness: Studies in Pathography, Hawkins concludes, “Not only, then, does pathography [patient narrative] restore the phenomenological and the experiential to the medical encounter, but it also restores the mythic dimension that our scientific, technological culture ignores or disallows.”

In addition to Isabel Smith’s representation of a TB patient’s perspective on various aspects of curing, Smith provides a compelling testament to the therapeutic power of writing and an eloquent explanation of its process. During her twenty-one years as a patient, Smith led a painful and precarious existence. Yet, also evident in her memoir and according to all who knew her, Smith’s optimism and engagement with life were inspirational. How did Smith maintain such optimism in the face of despair? Smith writes in her memoir of a pivotal event early in her curing process, “One day I picked up a notebook from the shelf over my bed. Its pages were blank and I wondered why it had come there in the first place. Then I had a wonderful idea. It would be my Trouble Book. [I wonder, were the initials TB intentional?] In it I would set down all my tumultuous, chaotic thoughts just as they came. . . . Once my problems and worries had become tangible words on a page, I discovered that I could deal with them almost as impersonally as if they belonged to someone else. . . .Writing in my Trouble Book provided me with a means for taking action of a sort, even when it did not amount to more than pushing a pen. And when I closed its pages I always felt relieved and released, as if whatever I had confided to it was now no longer here, but there.”

Smith articulates explicitly and clearly what many TB patients felt and practiced-writing supports healing. In one of his letters to Aunt Peggy, seventeen year-old Bill Hastings wrote with unintended irony, “It really is remarkable how people have so much hope and faith in their recovery. I really don’t know what I should do if I were in such a helpless situation.” In fact, Bill knew what to do. He wrote. Formal research has begun to theorize what patients like Bill Hastings and Isabel Smith have known intuitively and practiced informally. Groundbreaking articles in the Journal of the American Medical Association report positive results using writing in clinical settings. Gabriele Rico and Louise De Salvo combine rigorous research with personal experience to reveal the therapeutic power of writing. Psychologist James Pennebaker’s experiments with expressive writing suggest the healing potential of writing as a means for “opening up.” Charles Anderson and Marian MacCurdy’s collected essays from a variety of researchers and disciplines explore the interpenetration among writing, health, creativity, and learning. Joseph Gold and Mark Turner draw on the latest scientific findings to establish a biological basis for narrative. Increasingly, studies attest to the therapeutic value of writing.

Patients’ own narratives, however, speak most authoritatively about the benefits of writing, and Bill Hastings, Evelyn Bellak, Herbert Scholfield, Adelaide Crapsey, John Dalton, Edward Locke, Beanie Barnet, Martha Reben and Isabel Smith have spoken eloquently about the power of “patient writes” at the “university of tuberculosis.” Their writing represents only a small part of the Saranac Lake collection and a tiny fraction of what must exist worldwide in relation to tuberculosis and other ills. Like a stone tossed into a mountain stream, patient writing creates multiple ripples of engagement. Although the therapeutic effect may be at the heart of a patient’s writing process, “patient writes” must find their place within the dominant discourse of scientists, clinicians, and formal historians to establish a more honest, informative, and humane discourse of disease.

References:

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