Patient Poets: Pathography in Poetry

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  • Patient Poets: Pathography in Poetry

    Marilyn McEntyre*University of California, Berkeley

    Abstract

    For people suffering from illness or disability poetry can provide a powerful means both of copingand of communicating the ambiguities and inexplicabilities of their condition. Caregivers may findin poems written by patients kinds of information not accessible by means of conventional clinicaldialogue, or even by means of narrative. The three poems by women that are featured hereillustrate some of the ways poetic techniques and literary devices can be of practical value to bothpatient and caregiver, and offer all readers ways of imagining illness that could be arrived at in noother way.

    In Reconstructing Illness, Anne Hunsaker Hawkins provides a useful overview of observablestrategies in biographies and autobiographies focused on the experience of illness or dis-ability, now commonly called pathographies. Two of the most common metaphors forthat experience are battle and journey. Each of those metaphors frames and organizesillness narratives in distinctive and consequential ways. Since that book was written, muchattention has been directed to narrative medicine, an approach to medical care that fore-grounds the role of narrative in the work of patients, physicians, and caregivers.As a way of articulating and communicating the experience of illness or disability,

    poetry opens a very different window from narrative, emphasizing discontinuity, surprise,experiential gaps, and the uneasy relationship between words and the life lived in thebody. The practice of poetry teaches us to hear differently. Depending on our trainingand what we learn to recognize as relevant to our purposes, we learn to listen for certainkinds of information, and to expect it to be delivered in certain forms and sequences.When we break up those forms and sequences, we hear in new terms. Words becomesignificant in new ways. Familiar data may be reframed and assume new kinds of signifi-cance and relevancy.Narrative is one way of hearing and organizing information. Poetry is another. Both

    are mimetic: both mirror and organize certain dimensions of experience, and make itstrange, which Adrienne Rich, among others, defined as the task of the poet. It can behard to remember that life is not story. Things do not happen in sequences or well-constructed plot lines. Neither is it tragedy nor epic nor comedy, though each enables usto see something true about life. Every literary genre and work invites us, by its veryform, to consider again how things happen how we locate ourselves in time and space,how causes lead to effects, how we inhabit the present moment that emerges from andreconfigures the past.Poems set their own terms. There are prerequisites: if you want to read well and

    receive the gift the poem offers, you have to let go of the expectations you bring tostory. You have to accept and dwell in ambiguities that do not resolve themselves imme-diately, letting meanings emerge, sometimes different possible meanings, simultaneously.You have to stop in odd places and reconsider your assumptions, and accept even thesilences as an invitation.

    Literature Compass 8/7 (2011): 455463, 10.1111/j.1741-4113.2011.00779.x

    2011 The AuthorLiterature Compass 2011 Blackwell Publishing Ltd

  • Poems written by patients offer their caregivers unique diagnostic tools. Diagnosis inthis sense does not mean identifying a disease so much as getting a more complete under-standing of how the patient experiences disease. Poems offer both information andinvitation. The information, however quirky, may be surprisingly medically relevant.The invitation is to open oneself to empathy, or to radical uncertainty, or to comic possi-bilities, or to uncomfortable intimacy. All good poems, even long ones, stop us as insis-tently as they move us onward. Every good poem has an undertow: as we read, we findourselves repeatedly having to decide whether to go back, pause in place a momentlonger, or move on to the next line.In addition to information and invitation, good poems offer guidance. They offer alter-

    native models or maps of suffering, pain management, adaptation, and healing work. It ishelpful, especially reading poems in contexts of caregiving, to consider each poem ananswer to a question that deserves to be asked, and to expend the effort it takes to iden-tify the question.A number of recent scholars have considered the question of how poetry works in

    those contexts. In her 1999 article, Poetry Breaks a Silence that Had to be Overcome:The Therapeutic Value of Poetry Writing, Gillie Bolton identifies some of the reasonswhy poetry writing in particular may be effective for patients (as well as for their caregiv-ers): its initial stages are often intuitive, and unreasoned; revision of poetry, with its closeattention to words, is often a process of discovery that brings insight and consolidation;it offers a measure of control that can be stabilizing; it invites speculation and inferencein calling attention to what remains unwritten in the blank spaces as well as to what iswritten; and it is essentially contemplative work. Therapeutic writing, she claims, is anact of faith in the self (Bolton 11921).Illustrating that act of faith dramatically and explicitly, Barbara Neri offers a specific

    case study of poetry related to illness in her vigorous stage monologue, The Consolationof Poetry. In the introduction she reflects on her performance of Elizabeth BarrettBrownings poems often undervalued and misread, she thinks as an example of writ-ing that is literally a matter of life and death (Neri 46). In that script, the character ofBrowning speaks as one whose life is lived in full knowledge of death. The Speakeridentifies herself as a reader who takes Brownings lines into her body as she reads, andfeels the reverberation of Dantes vision of love and loss in them. The play articulatesboth reading and writing processes as work of exploration that fully engages the life ofthe body, considering numerous excerpts from Brownings poems as acts of survival, dis-covery, and correction that make pain into an art form by precise, careful, subversivedeliberation. Both Neris play and Boltons reflections, representing two of a range ofapproaches to the question, both scholarly and creative, insist on a complex, empathicview of reading and writing as always quite literally involving the body as its own instru-ment of awareness. Both insist, as many others have, on the specific diagnostic and thera-peutic relevance of word craft.Perhaps the most widely read example of practical convergences between poetry and

    healing is documented in John Foxs Poetic Medicine: The Healing Art of Poem-Making, inwhich he tracks the processes of work with hospitalized patients in writing groups,chronicling their interactions with each other, their struggles with the ways illnesssilences, and how to contextualize their stories. The book includes a range of exercisesrecommended for readers who seek to explore for themselves the connections betweenwriting and the life of the body. The book is a landmark for students of poetry in medi-cal contexts not unique (similar experiments and studies have come out of severaluniversity medical centers), but more comprehensive than most.

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  • Many hospitals now sponsor writing workshops like the Alzheimers Poetry Project,founded by New York poet Gary Glazner, where caregivers work on the spot with patientsto bring forth utterances that may be read and considered from the vantage point of poeticsas uniquely valuable information about patients cognitive processes. The Society for theArts in Health Care (http://www.thesah.org) brings participants in such projects together ata yearly conference where experiments in therapeutic uses of poetry are regularly featured.Such experiments may be seen at their most luminous refracted in the work of poet-

    doctors like the late Rafael Campo, who makes a similar case for the role of poetry inmedicine, since it is an expressive medium in language capacious enough to make empa-thy for human suffering, if not entirely comprehensible, then at least clearly and palpablyevident (Campo 187).In keeping with the growing tide of efforts to pay close attention to what we can learn

    from patients poetry, I would like to consider here three poems by patients about theirexperience of illness, pain, or disability, focusing on the kinds of information those poemsprovide, and on how caregivers may learn new techniques of listening from the hard-won words of people whose suffering has led them beyond the narrative frames of casehistory or story. I will be focusing in particular on strategies of disclosure, the element ofconfession in poems about personal pain, the way images encode experience, and thefunction of the persona or point of view in poems where the distinction between poetand speaker is particularly sharp. All three are contemporary, all by women with consid-erable experience both in writing and in coping with illness.Karen Fisers Still Life with Open Window, from her collection Losing and Finding,

    recalls the pain and disorientation she experienced after major surgery. The title, with itsslightly ironic double entendre, casts the poem against a backdrop of visual art one thinksof the many Dutch paintings of interiors with an open window that suggests a worldbeyond domestic walls to which access is carefully circumscribed, and of the still lifegenre that depicts mostly inanimate subject matter. Another reading of the title, of course,is possible: the speaker still has a life; she is not inanimate. And there is an open windownearby that invites her to imagine a world beyond the hospital walls, if not to escape them.

    Still Life with Open Window

    Pain, fatigue, hunger give timethe color of the infinite. Simone Weil

    I went to sleep as one womansilken, magic, strongmy life full of intelligence, bravura episodesand turns of phrase. I woke up all stitching and sorrow,with a silence around me like the endless quietat the edges of a late Rembrandt self-portrait.

    Time spent in pain exists absolutely, without structure,demarcation or relief, it is all one color,like winters rainy sfumato inscriptions on gray.Meanwhile, the other, inner life goes on, unwitnessed,the shadow a tree makes on the wall, rippling like water.

    Since nothing outward remains to signify or to connectone moment with another, no more achieved lifefor the moments to be part of, they will have to be connectedby what can flower within the moments themselves.Each moment must expand to hold my infinite, singing joy.

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  • The epigraph, as epigraphs do, sets a frame: this is a poem about how pain changes theway we live in time. In Space, Time, and Medicine, Larry Dossey documents remarkablecases in which a changed perception of time and ones own habitation of time provedintegral to healing; escaping strict linear time enabled patients to come to new termswith their situations. Many patients experience a kind of timelessness that is both a func-tion of pain and, paradoxically offers a way to resituate themselves relative to the painand to lives in which pain will likely be a factor to be reckoned with.Fisers speaker moves in an orderly way from an initial observation about what has

    changed in her sense of her own body, to a reflection on how time itself seems to havechanged, to a plan for adaptation to her reorganized life. What had seemed a seamlessfabric, silken, magic, and strong has been torn and stitched and will not be the same. Asingle, striking phrase, all stitching and sorrow takes the measure of how complete is theloss of what she once was. How things connect is different now: she will have to devisedifferent ways of making meaning, different strategies of self-identification and self-love.Several poems in this collection and in another pointedly entitled Losing and Finding, haveto do with loving who she was before her illness, and the work of learning to love whoshe is after illness has wrought its changes.But the poem is not a lament. It is a chronicle of process orderly, dignified, deliber-

    ate. The degree of pain, or its location, whether it is sharp or dull, aching or burning,doesnt concern the speaker, but rather the way pain has reconfigured her habits of being:she has no navigation system to steer her through the fog of pain, and she realizes thatshe will have to work off the grid, foregoing familiar agendas, dwelling in one momentat a time, not seeking meaning in achievement or accumulation or progress, but in what-ever may flower in moments that seem to be leading nowhere.And this process is unwitnessed a key term, since the poem itself discloses some-

    thing no one can know or see without the speakers own testimony. The image of theflower may evoke the lotus or the fiery rose that bespeaks a contemplative journeyinward rather than onward. Pain has taken away from this speaker exactly what somewisdom traditions encourage us to release: illusions that keep us bound in time andenmeshed in stories that obscure larger truths.The poem ends not on a note of false optimism the nothing, no more, have to

    be in the final stanza maintain the sense of loss and unwelcome necessity but on a res-onant note of hope that one way of living may be replaced by another equally, and per-haps even more, adequate to fostering awareness of the elemental goodness of being.Something has fallen away, but something has opened that may have its own sufficiency.On the other side of loss considered and accepted, the speaker retrieves a sense of an infi-nite, singing joy within, beneath the pain and more fundamental. That joy is not defeatedby suffering, but will have to be channeled in ways more precise, limited, and intentionalnow, in the long aftermath. It emerges in the final line as a fact, not an aspiration. Theauthoritative declaration, each moment must expand, suggests a resilient confidence thatadaptation is possible. The conditions of the bodys life do not determine the possibilitiesof the life of the spirit, though they make us revise our strategies.What seems important about this poem is the way it models hope. It frankly acknowl-

    edges the pain, the disorientation, the finality of loss, even as it moves with elegant andefficient grace to embrace the question, So, how then, shall I live? And the question isnot a cry of anguish or of rage or despair, though it so easily could be. It comes fromlife-giving curiosity a sense that whatever happens to change the life of the body intro-duces a new set of challenges to do what we are always challenged to do: accept whatwe must, assess what is possible, reframe what we thought we knew.

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  • The speaker muses on her own situation with a precision and minute attention worthyof a good clinician. Careful, imaginative description precedes the decision about how toproceed. She finds a series of remarkable images to encode the experience, allowing her-self and her reader to apprehend her situation as connected to art and nature unwit-nessed, perhaps, but not unprecedented. The image of the inner life as shadow evokesan idea of the dead who live as shades insubstantial, elusive, underground. The termunwitnessed compounds this sense: we all have some sense of being alive because weare seen.What might once have been communicable logically and sequentially must now be

    approached by means of images. The darkness at the edge of a Rembrandt paintingand the rains undecipherable inscriptions of gray on gray and the insubstantial shad-ows of trees on water all suggest a dimension of mystery to be accepted rather thanprobed.The speaker in this poem is highly self-aware, able to detach from her own pain and

    loss enough to make a critical assessment of what is happening to her. She opens withtwo sentences of personal statement that contrast the life she knew with what she hasawakened to. As it turns out, awakening, in a larger sense, is just what she has done. Asthe second stanza broadens into impersonal reflection, the personal pronoun disappears: itis the inner life she speaks about rather than my life. The simile, like winters rainysfumato inscriptions on grey, makes pain a feature of the landscape, as ordinary and asuncontrollable as rain. Her situation has given her access to a truth larger than the facts ofher own history. She has earned her way to the last line by doing the work required toaccept, consider, and understand her pain.We see a similar process of self-observation, chronicling, and imaging in Mary Bradish

    OConnors poem Midnight Cancer from her collection entitled Say Yes Quickly. LikeFisers, this poem offers an intimate view of pain, and focuses attention on how her dis-ease changes the way she lives in time. The poem traces a circadian cycle, telling a storythat has phases, but no trajectory. That the title is itself the first line of the poem contrib-utes both to an ominous momentum and to a sense that there is nowhere to stand out-side this experience: once the fearsome thing has been named, you are inside the fear.

    Midnight Cancer

    is a bottomless pitwhere voices echoaround and aroundendlesslyrepeating the sameprayer:ohGodwhyme?Sooner or later, midnightcancer changes tomorningcancer,brighter,more hopeful.Somewhere the sunrises warm and round.

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  • Birds are singing.After a while,morning cancer meltsinto afternoon cancerwhere it hides among chores:cut the grassclean the downspoutsdrain the noodles.Later, the house falls silentand even the dog is asleep.There might or might not be rain.Without a soundyou are falling,arms wide and circling.Its midnight.You have cancer.

    Where Fisers poem contains inchoate experience in three measured stanzas, this oneseems to stop for shallow breath at the end of each short line. The short lines invite us totake in a phrase at a time, as though each partial thought occurs separately and requiresits own burst of effort. A number of lines offer momentary resolution, but it is quicklydissipated; a following line will disrupt the temporary respite of a happy image (sun,singing, noodles) or a period. The long single stanza suggests the relentlessness of aninescapable condition; though anxiety waxes and wanes, no real break is offered noplace to catch the breath, stop, take stock, find a fresh point of view.The point of view established in this poem is one of its more significant features:

    where Fisers poem begins and ends in the first person, OConnor surprises the readerwith the second person, inviting and even commanding unsettling identification with thespeaker in a condition that might so easily be yours, dear reader. But she introduces thatstartling you only in the final line. Up to that point, cancer is the focus of eachsentence. We are focused on what it does, rather than what the person with cancer feels.Feeling remains implicit, as though it is safer somehow to describe the experience inobjective terms. So the you works to two purposes: it forestalls the more naked declara-tion, I have cancer by positing that claim as a kind of hypothetical: heres what happenswhen people have cancer. It also compels empathy: Imagine this. Enter into it. Gothere.The poem conveys an experience of illness that is not progressive except in its increas-

    ing familiarity. This speakers accommodation lies not so much in reflection on the char-acter of her pain as in taking stock of what makes pain and fear managable, at least in themidst of the days distractions. But every night brings its renewal of terror. The ordinari-ness of the day, and of the images associated with daytime sun, singing birds, householdchores gives way to the uncertainties of nighttime (there might or might not be rain)and a final image of panic, falling, arms wide and circling.The terror with which the poem begins and ends, is like a bottomless pit or vortex

    reminiscent of Dantes hell. Time, for this poet, may be measured by the welcome dis-tractions each day brings, and the hours spent between those moments when the rawtruth, You have cancer, once again overtakes all the other occupations of the mind.OConnor, a therapist as well as a poet, died of ovarian cancer three years after pub-

    lishing this book. In both this collection and another, Calabash, co-authored and pub-lished in the same year, she experiments with ways of getting at the emotional

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  • complexities of living with cancer. These include a poem that recalls a carefree childhoodplaying in streets sprayed with DDT, poems about the hospital, poems about grieving,and poems that reflect on the process of inscribing her illness in poetry. She also includespoems about others who are living with cancer, including her dog. All of these, as wellas poems that remove the focus from the illness altogether, serve to contextualize acondition that has become a large but negotiable part of a much larger life, to be claimedand authorized, even in the process of dying.A third poem that offers unusual insight into patient experience is written by a woman

    who lived for years with a constellation of undiagnosed symptoms until her illness wasfinally identified as a rare form of autoimmune disease something like lupus. MandyRichmond Dowds Out in the Sun the Busy Lives Swirl seems to present a case onbehalf of a person who cannot control the disruptive symptoms or the suddenpain-induced outbreaks that make social contact precarious and embarrassing. WhereOConnors poem records persistent fear, this one testifies to the element of shame thatso often accompanies illness.

    Out in the Sun the Busy Lives SwirlMandy Richmond Dowd

    Sometimes it just gets in her hand, the shaking shakingthen jumps to her head like a train jumping trackand all the cars careen and none of the rules applyAnother lawless seizure on the loose

    Sometimes she can hold it in one finger for a whole dayor if it grows big can give it to her foot

    till her back will grab it grab her tongue tooand like a stubborn mute shell try to tell you anyway, anything

    cause everything is important in the momenteverything as urgent as the claw inside her skullurgent as speech to the captive

    A shock like a fist to the back of her head cracksa whip in her spine and shes sorry shes sorryfor her biology, for her persistent wish to endurethe broken existence shes put in your path

    And for the fact of her need she wants to scurrylike a hermit crab into the shadowslike a hobo away from the weddingwhere none can rebuke the ungainly scope

    of her achefor a call in the dark from an old friend who seesthrough the frightening symptoms of natures frank and random coursethe soul is the same is the same

    Fear, longing, shame, and urgency characterize the speakers daily life. The poets choiceto write in the third person allows her to align herself with the reader as outside observer one who is learning about this pain, whose course is unpredictable, and whose emo-tional repercussions run their own gamut. Fear of exposure, fear of being judged or mis-understood seem to drive the speaker with her urgency to explain and apologize; it is aplea for understanding that funnels its anxious energies into the poignant, insistent last

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  • line: the soul is the same is the same. As in the other two poems, the speaker in thisone is acutely aware of a growing chasm between the life she lives in her body and thebusy lives out in the sun. In contrast to theirs, hers is lived in a dark and secret place,to which she scurries and hides and waits for the one who sees.When I asked a disabled woman once what were the hardest things about being

    wheelchair-bound, she immediately answered, Very few people make sustained eyecontact. They glance at you and look away. She went on to explain what efforts it tookto escape the constraining social category of disabled person. Dowds poem enacts thateffort, invoking what Francis Ferguson called the histrionic imagination, challengingreaders to think with their bodies. She challenges us to identify with one who is like us,but has been invaded by an alien that performs its strange antics in her hand, her head,her foot, her tongue.The poem offers considerable information about the speakers experience of her illness

    and about her pain management strategies. The speaker responds to random, unpredict-able seizures in two conspicuous ways. First, she finds exculpatory images that absolveher of responsibility for what she knows to be socially unacceptable: what is happeningin her body is like a train jumping track. It is lawless and on the loose beyondcontrol by the rational, observant, inventive person who speaks of it and herself inthe third person. It roams and grabs, pins her into a corner and knocks her in the head.Possibly the most jarring image is the claw inside the skull that scratches against barrierstrying to open a window to the world. A second prong of her response to the onslaughtsof her condition is strangely and sadly confessional. Imagining how others see her, thespeaker compares herself to a hermit crab in the shadows, a hobo at a wedding,ungainly and out of place, someone whose broken existence is an impediment toothers. These self-shaming images and the repeated apologies shes sorry, shes sorryfor her biology for her persistent wish to endure have an ironic edge. They bespeakboth authentic humiliation and a certain defiance: she has, after all, demonstrated thatshe has no choice about the broken body she inhabits. Her condition is her biology,and her wish to endure elementally, rightfully human, even heroic, under thecircumstances.The absence of end-punctuation throughout the poem underscores its tentative, exper-

    imental quality. The speaker is venturing a try at making herself understood. But the twoanxious repetitions work like an undertow that subverts her urgency and energy to liber-ate herself from isolation: shes sorry, shes sorry, yet cant we see that the soul is thesame, is the same.What poems like these can do, if we let them, is teach us to listen more imaginatively,

    more acutely, more compassionately. We can learn to attend to their images, their puz-zling line breaks, their shifts of focus to all the techniques we call literary as keys toconditions of body and mind that could not be adequately articulated in any more discur-sive way. Suffering is a truth that must be told slant, as Emily Dickinson advised. It canbe conveyed, but not in simple declarative sentences, and not on scales of one to ten.The skills and discipline poetry teaches are transferable to the clinical encounter. Every-one who speaks encodes. All dialogue has its pauses, metaphoric detours, apparent irrele-vancies, subtexts, allusiveness. Poems have many non-utilitarian uses, and I would be thelast to recommend a simply utilitarian approach to them, but I do want to close with astrong, somewhat utilitarian claim: poems have practical value. Reading them well ispraxis, and practice for the challenging, subtle, peculiar, rewarding work of reading whatis inscribed in the human faces and voices and bodies that come into our clinics and class-rooms in the hope of being healed.

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  • Short Biography

    Marilyn McEntyre has written about and taught medical humanities for the past 25 years.Her primary focus has been on equipping undergraduate premed majors to enter medicalschool with a wide repertoire of questions about what is medically relevant. She has alsotaught sundry short courses and workshops for medical students, medical professionals,and lay people interested in medical care. She serves on the boards of the OnlineDatabase of Literature, Arts, and Medicine, Literature and Medicine, and the Program forthe Medical Humanities, and Law at UC Berkeley. She teaches classes in the UCB-UCSF Joint Medical Program and is a Fellow at the Gaede Institute for the Liberal Artsat Westmont College. She has published in Academic Medicine, Medical Humanities, Perspec-tives in Biology and Medicine, Pharos, and co-edited Approaches to Teaching Medicine and Liter-ature with Anne Hunsaker Hawkins (MLA, 2000). Her most recent book is Caring forWords in a Culture of Lies (Eerdmans, 2009). She is currently at work on a collection ofreflections on poetry by patients with terminal or chronic illness. She has taught at MillsCollege, the College of New Jersey, and Westmont College as well as UC Berkeley. Sheholds degrees from Pomona College (BA), UC Davis (MA) and Princeton University(PhD).

    Note

    * Correspondence: Dr. Marilyn McEntyre, 6779 Aitken Drive, Oakland, CA 94611, USA. Email: marilmcentyre@westmont.edu

    Works Cited

    Bolton, Gillie. Every Poem Breaks a Silence that Had to Be Overcome: The Therapeutic Value of Poetry Writ-ing. Feminist Review. No. 62, Contemporary Women Poets (Summer 1999): 11833.

    Campo, Rafael. The Healing Art: A Doctors Black Bag of Poetry. New York: W. W. Norton, 2003.Dowd, Mandy Richmond. Out in the Sun the Busy Lives Swirl. Privately published (1991).Fiser, Karen. Still Life with Open Window. Losing and Finding. Denton, TX: U North Texas Press, 2003. 36.Fox, John. Poetic Medicine: The Healing Art of Poem-Making. NY: Jeremy Tarcher Putnam, 1997.Neri, Barbara. The Consolation of Poetry TDR (1988). The Drama Review (T179) 47 (Fall 2003): 4577.OConnor, Mary Bradish. Midnight Cancer. Say Yes Quickly. Comptche, CA: Pot Shard Press, 1997. 46.

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