Showing 211 - 220 of 840 annotations tagged with the keyword "Patient Experience"
Frank argues that the modernist conception of illness is a form of "colonization" in that the ill person hands over his or her body (and life narrative) to biomedical expertise. In a post-modern conception, however, the ill person reclaims the authority and ability to tell his or her own story, and to construct a new life narrative from the "narrative wreckage" of serious illness or injury.
Frank identifies four dimensions by which one's relationship to the body may be understood: control versus contingency, self-versus other-relatedness, dissociation versus association with the body, and desire versus lack of desire. Frank presents a diagram (p. 30) in which he sketches four "ideal typical bodies" that arise from various combinations of control-contingency, etc. These include (a) the disciplined body, (b) the mirroring body, (c) the dominating body, and (d) the communicative body. While the first three lead to problems in constructing a satisfactory illness narrative, the last is an "idealized type" in that it is not only descriptive, but also "provides an ethical ideal for bodies." (p.48)
Frank then categorizes patients' illness narratives into three main themes: (a) restitution narratives, in which the plot involves returning to one's previous state of health; (b) chaos narratives, in which all life events are contingent and no one is in control; and (c) quest narratives, in which illness is seen as a spiritual journey. This understanding serves as a starting point for a narrative ethic of illness.
Struck Dumb is a collaboratively written play based on the firsthand experience of stroke by one of the authors, Joe Chaikin. Chaikin, when about 50 years old, suffered a stroke during an operation for a faulty heart valve, which left him aphasic. Co-author van Italie, stated that this play "is a theatrical metaphor for the aphasic character's mind: his written thoughts literally come flying in at him from all sides of stage in full view of the audience." In this way an actor who is aphasic and can read, can play the role.
The main character, Adnan, is a "50ish" Arab-American living in Venice, California who has suffered a stroke. The "scenes" in the play revolve around a day in the life of Adnan beginning with "waking up," ending with "sunset," and in between with "practicing words," "my house," "the mall," and other everyday, yet extraordinary, concerns.
After five unproductive meandering sessions, Mr. Trexler, the patient, turns the tables on his psychiatrist, batting back to him the question he has just been pitched: "What do you want?" The doctor's pathetically shallow and concise answer, "I want a wing on the small house I own in Westport. I want more money and leisure to do the things I want to do"(101), propel Mr. Trexler towards compassion for the doctor, and a feeling that he himself had regained his own quirky hold on the world.
After leaving the "poor, scared, overworked" doctor, Trexler thought again about what he wanted: "'I want the second tree from the corner, just as it stands,' he said, answering an imaginary question from an imaginary physician. And he felt a slow pride in realizing that what he wanted none could bestow, and that what he had none could take away. He felt content to be sick, unembarrassed at being afraid; and in the jungle of his fear he glimpsed (as he had so often glimpsed them before)the flashy tail feathers of the bird courage"(102-3).
The French writer Alphonse Daudet (1840-1897) developed the form of tertiary syphilis called tabes dorsalis in the early 1880’s. Tabes progressively destroys the structures of the dorsal column of the spinal cord, leading at first to lower extremity ataxia and neuropathic pain, and eventually to paralysis of the legs associated with intractable pain. Daudet sought treatment from the leading neurologists of his time, including J. M. Charcot and C. E. Brown-Séquard, but the disease progressed relentlessly.
At some point Daudet began making notes for a book about his illness. He spoke to several of his contemporaries about this project, but the book never became more than a collection of brief notes, which were collected and published posthumously as "La Doulou" (Provencal for "pain"). This short book, translated here by Julian Barnes, consists of "fifty or so pages of notes on his symptoms and sufferings, his fears and reflections, and on the strange social life of patients at shower-bath and spa." (p. xiii)
The notes are generally in chronological order, beginning with short comments like "Torture walking back from the baths via the Champs-Elysées" (p. 4) and "Also from that time onwards pins and needles in the feet, burning feelings, hypersensitivity." (p. 6) In a long section toward the end Daudet comments on his experience at Lamalou, a thermal spa that he visited annually from 1885 to 1893. "I’ve passed the stage where illness brings any advantage or helps you understand things; also the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek." (p. 65)
Dr. Thomas Graboys is an eminent Boston cardiologist who developed Parkinson's disease in his late 50s. Shortly after his wife died in 1998, Graboys noticed unusual fatigue and mental sluggishness. He attributed these symptoms to grief, but they continued and he later experienced episodes of stumbling, falling, and syncope. During 2003 Graboys confided to his diary that it was "increasingly difficult to express concepts." ( p. 30) He also noticed tremor, problems with dictation, and frequent loss of his train of thought, symptoms "typical of Parkinson's." (p. 24)
While Graboys recorded these concerns in his diary, outwardly he denied that anything was wrong, even to family and close friends. In fact, his denial continued until the day in 2003 when a neurologist friend accosted him in the parking lot and pointedly asked, "Tom, who is taking care of your Parkinson's?" (p. 27) Dr. Graboys faced an even more difficult challenge in 2004 when he developed the vivid, violent dreams and memory lapses that led to a diagnosis of Lewy body dementia, a form of progressive dementia sometimes associated with Parkinson's disease. With the cat out of the bag at last, the author finally began to confront the issue of professional impairment. In mid-2005 Graboys's colleagues seized the initiative and told him that "it was the unanimous opinion of my colleagues that I was no longer fit to practice medicine." (p. 36)
Writing now with the assistance of journalist Peter Zheutlin, Graboys reviews these events with unblinking honesty. He confronts his anger and denial, but also reveals the thoughtful, generous and passionate side of his character. "What will become of me?' This is the question that now lies at the center of Dr. Graboys' personal world. He knows that his loss of mental and physical control will worsen. With almost superhuman effort and his family's strong support, the author has been able to adapt to his limitations and maintain a sense of meaning in his life. Will that continue? In a chapter entitled "End Game," he addresses the question of suicide. Reflecting on his condition, especially the dementia, Graboys asks, "Will I lose myself, my very essence, to this disease?" (p. 161)
In the last chapter, Graboys acknowledges that he has no "simple prescription that will help you or someone you love live a life beyond illness, or tell you how to tap the hope that lives within." (p. 181) However, he then goes on to make several suggestions of the advice-manual variety: "Use your family and friends as motivation to live life with as much grace as you can muster." "Find a safe place... to unburden yourself of anger." "Acceptance is key to defusing anger, stress, and self-pity." "Use your faith in God, if you believe in God." (pp. 181-182)
Summary:A seated naked figure, back to viewer, embraces another facing forward, her hands covering her eyes and face. To the left of the couple, clearly "attached," is a third, amorphous, dark menacing, shadowy entity literally touching the pair. The empty space to the right of the figures is filled only with a wallpaper pattern, suggesting, on a cursory glance, that the painter was more interested in composition than content.
Aerobics of the Spirit is a collaborative permanent online exhibition of art by Mary Anne Bartley and poetry by Emanuel E. Garcia, M.D., featuring twenty-nine images and five poems that reflect on sickness. The actual art represented on line consists of acrylic polymer emulsion color canvases and originated at Villanova University, where Bartley is Artist-in-Residence.
The first display (the homepage) includes an Artist's Statement outlining the two artists' tenets that art has a great medical value in the healing process, and that the utilization of one's inner creativity is a powerful treatment in stress reduction. Bartley suffered as a young girl from acute rheumatic heart disease and later became a pioneer in the field of Art in Medicine. Dr. Garcia is a psychoanalyst and psychiatrist who specializes in the treatment of creative and performing artists.
The first display (image 1) also includes artwork, "Lamentations"-- three sliced off faces in profile on a background of mottled blue-green-yellow-brown. Underneath the faces are outstretched arms with reaching fingers, seeking small heart shaped objects that float nearby.
The third and fourth displays (images 2 through 8, plus un-numbered kite drawings), "A Flotilla of Healing Kites," is meant to evoke feelings including freedom of spirit and place, deliverance from ailment, and childhood wonder. Bartley and Garcia include a song by psychotherapist Bruce Lackie, PhD, recognizing "the importance of the arts in healing the spirit." Reminiscent of Jackson Pollack's work, Bartley's kites possess a vibrant energy that, in contrast to what many would find macabre subject matter--sickness and death--elicits hope and joy from the viewer. Other works exhibited later in the online exhibition are non-representational images, often portraits, which make use of color and unconventional painting techniques to convey similar emotions.
The fifth and sixth displays (images 9 through 12), "Collaboration of Poet and Artist," is a joint project begun at The College of Physicians of Philadelphia, Section on Medicine and the Arts. Here, Garcia and Bartley dialogue with one another's work in a "Responsorial Psalm." This section includes the text of two poems by Garcia and a reading by him of one of them.
The seventh and eighth displays (images 13 through 24), "Portraits of Our Self and Others: Intimate Conversations We Have with Our Self," focuses on the power of facial depiction in bringing "new meaning to the past," and to "help rescue [an artist] from the depth of mourning." Included are the text and a reading by Garcia of his poem, "Portraiture."
The ninth display, "Vers la Flamme," pairs a three-part poem ("The Consultation," "The Stay," "The Cure") with three paintings-- the kite shaped drawing, "Behind the Dancer's Mask," and images 25 and 26.
The tenth display (image 27), "Homage to Wilma Bulkin Siegel, MD", pays pictorial tribute to Dr. Siegel, a "pioneer in the hospice movement"
The eleventh and twelfth displays (image 28), "Homage to Healers: John Y. Templeton, III, MD," features a painting of surgeons' hands covering an abstract human heart and a corresponding poem and reading. Mary Anne Bartley explains in text following the image Dr. Templeton's role in saving her life during her teenage years, and again "salute[s] this gentle healer:" "I carry the fingerprints of this great man in my own heart."
Dr. Garcia's poem, "Homage," expounds on Bartley's pictorial sentiment with words: "Darkened to nil . . . / to surrender to a surgeon's tryst, / Hands on my heart to cut and to caress / Deeper than any lover any lover ever would." The display also includes photographs of Bartley as a young patient in 1967 at the time of her surgery, of Dr. Templeton, and of all three--Garcia, Bartley, and Templeton--at an exhibition.
Mind, Body, Spirit consists of three pictures. The artwork representative of "Mind" shows a woman in a wheelchair wearing a red beret, bright yellow smock, and holding a paintbrush in one hand and a palette in the other. The frame around the seated woman is composed of ovals of one color enclosed in squares of the opposite hue. The woman looks directly at the viewer and sits squarely in the center of her chair and the image. Although enclosed by a thick border, the woman’s feet, and the brushes in her right hand and mouth break out past her boundary.
The depiction of "Body" maintains the same layout template. Here, however, the woman seated in a wheelchair is wearing yellow flippers, a yellow bathing cap on top of which sit goggles, and a red swim outfit. On her lap is a floatation device - a swimming tube - that the woman covers with her folded arms. Four colors comprise the background: blue, green, aquamarine, and purple; these are grouped into shapes evocative of waves in water. As in "Body," the seated figure, although enclosed by thick borders, trespasses beyond; in this picture, her flipper-encased feet challenge the confines of her space.
"Spirit" makes use again of the same template. Here, the background is given perspective and is representational of grass and sky. The blue-green colors are restrained and soothing. The woman meditates in a wheelchair, and is visually balanced with symmetrical positioning of hands, arms, and feet. Her hair is fully visible and uncapped by a headpiece. In contrast to the other two images, her eyes are closed. She is flanked by a blue and green border, beyond which her hands and feet extend.
To Kiss the Spirits: Now, This Is What It Is Really Like is in oil on canvas with a painted frame. The work's center is filled with a column of light that stretches like a holy tornado from the top of the frame to the bottom. Within the luminescence exists a spiral staircase up which silhouetted ladies ascend. As the women move from the bottom of the stairs to the top, their colors change from purple to pink to white. The ladies who have reached the top of the stairs gain wings and fly into the starry night.
The bottom of the painting is lined with small, plain houses, some of which are lit interiorly. The sky is filled with stars, which appear in greater numbers the farther their distance from the ground.
An overhead ceiling lamp partially illuminates a dreary room, which is colored in glum blues and black. In the center of the print and within the cone of light that extends downwards from the ceiling lamp are two items. One is a square picture on the wall of a gown with lace that appears to be made of barbed wire. The other is a rectangular object on the floor that may either be a bed or a coffin. On top of the rectangular object lies an indistinguishable shape, perhaps clothing. Strewn on the floor of the room is some sort of debris.
The other objects in the room are a dresser with an open drawer and an open box that rests on top of the dresser. The room is sealed; the two windows are boarded up and the door is locked shut with a plank of wood. Writing along the bottom of the picture gives the piece its title: "Hoping to Bring Her Life Together...It’s Not Hard, It Just Takes Time."